Roman was diagnosed with neuroblastoma on April 25, 2007. A month or two after his diagnosis, Jody began sending email updates to close family and friends. This is a log of her messages to date.

March 5, 2014

Hello to our family, friends and new friends!
This has been quite the most amazing day!  I know it’s been a very long time since I have updated, but bear with me as I have amazing and happy news to share with you!
Back in November, we were so happy and honored that Roman was chosen to be a SURVIVOR on the Survivor Wall in the Bone Marrow Transplant Unit at Cincy Childrens. This is where almost 7 years ago, Roman stayed in the hospital for a solid month straight for his bone marrow transplant. To see pics of Roman today on the BMT unit, click on link....

https://picasaweb.google.com/106623849759620195926/SurvivorWall?authuser=0&authkey=Gv1sRgCMKs9a_QrcWMjwE&feat=directlink

I want to say that we would not have had this amazing opportunity had it not been for the help of my dear friend and neighbor Kim Kruspe. We love you Kim! In November, Roman had a professional portrait session done in his Taekwondo gear. Sheridan was also able to have a few pics done too. These pics were taken by a BMT nurse named Stacie. She and Dr. Davies both work together on this amazing project, where they choose a child who survived a BMT for each disease they have transplanted. Roman was chosen to represent Neuroblastoma.  
Today was THE most amazing day for Roman and our family. He got to choose where to hang his Survivor portrait on the Survivor Wall. He got to stand ever so proudly next to his portrait smiling of course! For Mike and I it was like walking right back into our emotions from almost 7 years ago. A sense of pride came over me as I saw his portrait being hung. I teared up as I was thanking Dr. Davies for doing what she is doing. Having our son on that Survivor Wall giving hope to other Neuroblastoma families fills our hearts completely. Seeing him in his Taekwondo gear with fists prepared to fight means more than the world to us. Roman was a fighter back then and he will always be a true fighter in the future.     Derney(grandma) got to be a part of today as well. She and Duppy both were so involved with taking shifts at both the hospital with Roman and at home with Sheridan.  We know that today Duppy is definitely bragging up in heaven about his grandson being up on that wall. We missed him today terribly! Mom, we love you and we’re so happy you shared this joyous moment with us!
Lauren (our angel and “adopted daughter”) was also able to be there with us to celebrate this special moment. Lauren was more than involved with our family back then. Words do not express how having her in our lives back then and to this day, has made us feel. We love you more than words Lauren and cannot thank you enough for loving us and supporting us and always being there for us without hesitation.  You are a blessing in our lives and a gift that keeps on giving. We love you!
As Roman’s journey goes on and he becomes more and more aware of and involved with his own cancer story, I can only hope and pray that he continues to defy the odds that were given to him almost 7 years ago. It’s moments like today that remind me even more of just how precious my son’s life is. How far he has come and to see what’s in store for him in his future. He truly is a walking miracle!
Please continue to pray for our fellow carepage and caringbridge friends who need those daily prayers for their children fighting for their lives. And for all of the cancer families who have lost their children in the fight.
God, please keep blessing our Roman as you have. We thank you for giving us this day!

Love to all of you! Jody, Mike, Sheridan and Roman Fariello     


September 13, 2013

Hello to our family, friends and new friends!

For September being Childhood Cancer Awareness Month, PLEASE watch this youtube video of ROMAN'S SONG, written and sung by "our adopted daughter" Lauren Burkhart. She wrote the song for Roman a few years ago. It is perfect for this special month as we reflect on Roman's journey and all kids fighting daily for their lives. I wanto thank Lauren and her brother Tony Burkhart with Blacklight Productions for putting the video together. It is just beautiful! The words are just beautiful and you will need tissues when you watch it! PLEASE watch the video for all kids who fight so hard each day to make it thru to the next day. PLEASE share this link with everyone you know to spread awareness about childhood cancer this month. God, please keep blessing Roman as you have! Jody, Mike, Sheridan and Roman Fariello 

http://www.youtube.com/watch?v=xnlRRDOj5Lw

July 2, 2013

Hello to our family, friends and new friends!

This past weekend, Mike and I and the kiddos traveled to Chicago for the annual Neuroblastoma Conference that is held by cncfhope.org

We had a wonderful time there. It is always more than interesting to learn of all of the many different types of research going on to try to find a cure for NB. All of the speakers that attend the conference both days are the top of the top in Neuroblastoma. To have all of that info for 2 days right at your fingertips from the top docs around the country and world is a win for all NB parents and families. Pat Tallungan does such an amazing job putting this together each and every year. More NB families need to attend. It is well worth the trip, time and money. The foundation is in memory of her son who she lost to NB years ago. I can’t say enough wonderful things about it! If you are a fellow NB family, wherever you are on your journey, please consider going next year. Even if you are Angel parents as well. They have sessions for Angel parents going on at the same time as the conference. So there is something for everyone, no matter where your journey is.

I want to shout out a HUGE THANK YOU to not only Pat but to her helpers too. While we parents are in the conference, our kiddos are kept busy in the kid room with a lady in charge by the name of Kenna Anderson. She and her team of helpers keep kids busy with fun for up to 8 hrs both days. They do crafts, play in the bean pit, have a magician, a balloon artist, face painter, etc. They truly are “ANGELS” in my opinion and deserve way more recognition than I’m sure they get. I know they don’t do what they do to be recognized, but they deserve the best acknowledgements ever! Kenna’s own daughter battled NB years and years ago when there was nothing known much about the cancer. I just wanted them to know how truly amazing we think they are to do what they do each year for our kiddos, so parents like Mike and I can enjoy the conference. Beautiful people in my eyes!!!  

One of the many perks going to the conference besides all of the latest info on treatments and trials is meeting fellow NB families. One of those families we met has an adorable daughter by the name of Baily. She is a cutie! Chad and Amy Ford are at the end of watching their daughter complete her last round of oral chemo this week. Baily had a post-transplant issue just like Roman did, called TMA. They also have a peanut allergy in common. Meeting the Ford family was definitely a perk. We will pray for Baily as she ends her treatment and starts the road that Roman is now on.

Another huge perk “blessing” for us is to meet and see NB survivors who are in high school and beyond. Both days of the conference, Pat ends the days with 2 survivor stories. It’s emotional for everyone in the room for many different reasons. For families whose child is currently in induction treatment, they see and hear hope. For families whose child relapsed, they see and hear hope. And for those of us, whose child is NED, we also see and hear hope. What the survivors give to all of us is priceless! I go to the conference just to hear them and see them and hug them. So emotional for me! Ina good way of course!

One of the volunteers in the kid room was a 17 year old young man named Greg. He introduced himself to me and said “I was where your son is”. I immediately started asking him tons of questions. He answered every single one of my crazee cancer mom questions and he even asked me questions about Roman. Greg and Roman compared their scars on their bellies, their central line scars, their teeth issues and more.

Greg was personality plus! He was such a blessing to me this weekend. He was my very own “personal therapy”! I am sure he knew he was helping me, and I am glad he was so willing to just hang around with us and talk with us and give us hope! His parents should be so very proud of him and what he’s doing each year volunteering in the kid room and doing so much more to bring awareness to NB. Greg, you are awesome and I only hope and pray that Roman can be just like you when he’s 17!!!

On Sunday, when we checked out, we surprised the kids by pretending to take a wrong turn and ended up downtown Chicago. On Michigan Ave, Sheridan saw the American Girl Doll Store. She begged to go in! We finally told her and Roman that we were going there for Sheridan and to the Lego store for Roman. Both kids were shall we say more than excited!

We had a wonderful weekend away. This has been an annual event for us. I can only hope that we continue to go and be that inspiration to families so they can see there are some miracles walking among them.

God, please keep blessing our Roman as you have.
Thanks to all of you for your continued prayers and support for our son and family.

Jody, Mike, Sheridan and Roman Fariello  

June 19, 2013

Hello to our family, friends and new friends!

Today, Roman had his annual check- up at Cincinnati Children’s Cancer Survivorship Program with Dr. Raj and coordinator Debra. He had labs drawn, urinalysis and a complete physical from head to toe.

He did amazing with labs and everything just as he usually does! He will have a referral to the pediatric dermatologist at Children’s for a mole to be looked at on his upper back. It is larger than Dr. Raj would like to see. Dr. Raj also watched Roman walk. I noticed Roman walking kind of up on his toes when he walks. Dr. Raj said he will let Dr. Pruitt, a rehab doc, check Roman out at next year’s visit.

Until then, we need to get Roman into some high top gym shoes to help support his right foot from going in when he walks. Other than those 2 extras we need to address, Roman is in picture perfect health. He is growing tall like a weed! He’s in the 90th percentile for his height. So, the radiation he took to his abdomen is definitely not stunting his growth, Thank God! We obviously won’t have lab and urine results until tomorrow. I don’t anticipate any problems so hopefully all will come back normal for Roman.

We are enjoying being out of school and the routine for summer break. Roman is an amazing son and we are so happy and blessed he’s doing so well. There is not a day that goes by where Mike and I are not reminded, that so many other cancer families are not where we are blessed to be. It’s in those specific times where I get emotional because we know Roman’s journey could have gone the other way. As a cancer parent, I ache for those families. What Roman’s journey has taught us is to live life fully, let Roman be as normal as normal can be and thank God each day that we have him with us.

We thank all of you for your continued prayers for our son. I will never stop asking for prayers for Roman. He certainly has used up your prayers from day 1. He needs them now and in the future and always. We really don’t know what the future holds for our son’s cancer journey. Love and thanks to all of you for supporting Roman and our family always.

God, please keep blessing our Roman as you have.

Jody, Mike, Sheridan and Roman Fariello         

 

April 25, 2013

Hello to our family, friends and new friends!

6 YRS AGO TODAY…APRIL 25, 2007, Roman was diagnosed with stage 4 high risk neuroblastoma, given 33% chance at surviving.

Here we are, 6 yrs later, we have one healthy, growing like a weed walking miracle!

I cannot fathom that 6 yrs has gone by us already from that dreadful, horrific, life changing day. I remember it as though it was just yesterday. I imagine that as we are blessed to celebrate such milestones with Roman, that I will ALWAYS be taken right back to this day. I can see it, I can feel it and still very much a huge part of anxiety for me 6 yrs later today. I can honestly say that I am so blessed that Roman was too young to remember everything like I do and like Mike does. It was and is a blessing that we bear these horrific memories and he does not. For that I am so grateful.

Sheridan and Roman both remember a few things from these past years, but I am so grateful not to the extent that I remember. Sheridan just asked me this morning, “Mom, will Roman’s cancer ever come back?” I answered her as open and honest as I could be with “Roman’s cancer type can come back at any given time, we just pray that it doesn’t for him”.

We have been missing Duppy terribly. We have celebrated a few holidays already without him. We have gone to the cemetery to visit him. It’s so hard but we are managing our new family life without Duppy. We talk about him a lot. This first year with all of the “firsts” is usually the hardest people say. I say, with losing both of my parents years and years ago already and a father in law now, that it truly doesn’t matter what or how many years go by. You still miss that loved one even more as time goes by. As time goes on, I believe it doesn’t get easier to deal with your loss, you just actually get a handle on coping and managing without the interaction you once had with them. I have to believe that as Roman’s #1 prayer warrior as Duppy was, that he is smiling down with such happiness that his grandson is thriving and growing and that cancer still fears him. Duppy loved Roman more than words. They had a sort of connection or spiritual connection with both of them battling cancer that could not be touched. I truly believe that Duppy is in heaven now watching and keeping a very close spiritual eye on Roman as he defies the odds that were handed to him. We love and miss you Duppy!

We would like to take this time to THANK all of our Roman supporters and prayer warriors for sticking with us on our son’s cancer journey. You have no idea how your prayers, messages and emails have lifted us when we needed to be lifted.  

God, please keep blessing our Roman as you have for the past 6 yrs.
Jody, Mike, Sheridan and Roman Fariello  

December 7, 2012

Hello to our family, friends and new friends!

Roman had his very first Survivor Clinic Visit the day before yesterday. It was a visit that came with a ton of information. Our coordinator gave us a Binder book with all kinds of survivor information for us to look over. Then, we went over every single chemo drug that Roman took for his protocol. Some more in detail than others. We discussed side effects that Roman could have from his treatment, both from chemo and from radiation. Roman took 7 different chemos: Doxarubicin, Cisplatin, Cytoxan, Vincristine, Etoposide, Carboplatin and Melphalan. I can’t believe to this day, still, that my son had all of that pouring into his body thru his veins at 18 months of age. These chemos all have their own set of immediate and late side effects. We went over the Doxarubicin. This one is VERY hard on the heart. Roman is at high risk for having any kind of possible heart issue there is. There is no set timeline either for when this could happen and if it will happen to him.  

One of the other side effects we discussed was infertility. I knew about this side effect already from 5 yrs ago. But, hearing it just made me sad all over again. I know in my heart, Roman is a miracle and I am not ruling out anything to where he is concerned, including fertility for him. As Dr.Raj told us, “you only need one sperm”. By the way, Dr. Raj is Roman’s new oncologist in the survivor clinic. He is a very good doc and Mike and I are pleased that Roman is in good hands.

Roman had an echocardiogram the other day at clinic. Today, our coordinator called me with results. His blood work is all normal. Thank God! However we learned some unexpected news that kind of alarmed me and shocked me…I say alarmed me because after everything Roman has been thru, this to me is nothing we can’t handle. Just something else for me to worry about for Roman on top of everything else I worry about for him and his future. She told me that Roman’s echo showed he has a TINY HOLE IN HIS HEART, located between the upper right and left atriums of the heart. Some people have this condition and not even know they have it.

What is kind of alarming to me is that Roman has had 4 previous echocardiograms over the past 5 years and this hole was NOT found. UGH! Our coordinator assured me that Roman doesn’t have to change anything he is doing. He will have an echocardiogram annually to monitor this now along with his annual check-up at the clinic. There is no known treatment for it and probably has been there since he was born. Comforting huh! UGH!!!!!!!

We also met with Sara Knapke who is a genentic counselor. She took Mike’s medical family history and mine. What we did find out put my crazee cancer mom brain to rest…that there was a possible connection to my mother’s pancreatic cancer and Mike’s Dad’s stage 4 neuroendocrine cancer; and that we passed some horrific gene onto Roman somehow. We can move on and I can finally quiet my brain at night while trying to sleep.

Mike and I had some questions for Dr. Raj about survivorship and Roman’s side effects. It was hard hearing all of the possible side effects that he is at risk for. They are: bone problems, heart and blood vessel disease, learning and memory problems, teeth and oral issues and kidney and bladder problems. And, those are the ones we ARE aware of… He told us the info that they do have about late side effects is MINIMAL because…… “THERE ARE’NT TOO MANY ROMANS OUT THERE THAT WE HAVE MEDICAL INFO ON” …….WOW, hearing that just reassured me that my son is truly a walking MIRACLE!
So, that being said, they really can’t tell us too much about late side effects because the bottom line is that there just aren’t really that many survivors to gather info from. Oh how I pray each day that Roman gets to be the child to help build these stats on late side effects and how to help guide a family thru survivorship.

Roman’s next appointment will be in July 2013. I requested a summer appointment so he doesn’t have to miss school for his next survivor visit.

I want to take this time to tell all of you to have a MERRY CHRISTMAS and a WONDERFUL 2013. I pray God will keep blessing our Roman as He has been doing the past 5 years. Love and thanks to all of you!
Jody, Mike, Sheridan and Roman Fariello

November 1, 2012

Hello to our family, friends and new friends!

WOW it’s been a while since I have updated. A LOT has been going on in the Fariello household the month of October. Take a look at these pics and click on link to see what’s been happening….

Roman and Sheridan have both been busy with Cub Scouts and Girl Scouts and finishing up the soccer season with the fall tournament. Both of my kiddos are doing amazingly well in school. SheridanBug just got chosen to be Panther of the Month at school. She is so excited!

On October 7th, we celebrated Roman’s 7th birthday. I cannot believe that my son is already 7!!!! Each and every birthday to me is nothing short of a miracle milestone that Roman has reached. He has come a very long way.

Speaking of long way…. On October 17th, we celebrated Roman’s 5 year anniversary of his Stem Cell transplant. In some ways, it’s been a very long 5 years, but in other ways, it feels just like it happened yesterday for him and our family. There isn’t a day that goes by where I do not Thank God for Roman’s life. He is truly a miracle and I am enjoying watching him grow.

We also celebrated Halloween and had fun, even though the weather was cold and kind of wet outside. Mike and I love dressing up with our kiddos. It’s so much fun for all of us!

Onto some important news…my father in law John “Duppy” is still battling stage 4 neuroendocrine cancer. He has tried 3 chemos and now on the 4th. He had a procedure on the 11th called Therasphere, in which glass beads with radiation gets injected into his liver. He seems to be handling everything ok and we pray each day for him. We love you Duppy!

Also, Roman goes to Cincy Childrens on December 5th for his checkup at the survivor clinic. He will see a new doctor named Dr. Raj. Roman actually has already seen Dr. Raj during his protocol early on, but he obviously won’t remember him because he was only 2 then. Dr. Raj is a good doctor and I am certain Roman will do well with him. We obviously will miss Dr. Wagner though, especially for this very first survivor clinic visit.

Roman will have an echocardiogram on his heart, blood work and urinalysis, as well as a complete physical. We also hope to have some time with the genetics doc. I will update after Roman’s appointment with his results and hopefully more details from the genetics doctor as well.

That’s all I have for now. Please keep our fellow carepage and caringbridge families in your prayers as always. Please keep my father in law in your prayers as well. Thanks to all of you for your continued love and support for our son and family.

God, please keep blessing our Roman as you have.

Jody, Mike, Sheridan and Roman Fariello
August 16, 2012

Hello to our family, friends and new friends!

WOW it’s been a long while since I have done a Roman Update. From that, I guess you can know that we are and have been enjoying “normalcy” in the Fariello household.

Roman started first grade yesterday!!! Thank you God! What a miracle and a blessing that he is able to do so, and without any kind of physical issues from his cancer journey thus far. He loves his teacher because it is the same teacher Sheridan had too, Mrs. Wehrman. Roman is also playing soccer nowl. I won’t say he absolutely loves playing like Sheridan does, but he is learning the sport and talks about how he gets sooo sweaty at practice:) He cracks me up!

Sheridan turned 9 in July. She also started 4th grade yesterday and is playing soccer and is a Junior in Girl Scouts this year. It will be a pretty fun filled busy school year for both kiddos. They are growing up so fast. It was strange for me yesterday having the whole day to myself. For the past 9 years, I have not been without a child all day long. I kid around about it with close family and friends, but I truly have enjoyed being a stay at home mom. I am very blessed to be able to do so. With Roman’s cancer journey, I am even more blessed because I know there are many kiddos with cancer who are battling for their lives, and parents cannot be with them at the hospital because they have to work, with no other help. All of that puts everything right into perspective immediately for me at just how blessed I truly am.

I didn’t get emotional yesterday with Roman starting first grade and being in school all day. I did worry though about him eating lunch with his peanut allergy. Not that I worry about HIM, it’s that I worry about all the other kids around him. He told me yesterday he got to sit at a peanut free table with a few other kids that have food allergies. I asked him if he was ok with sitting away from his class and he shook his head and said “yea mom”.  What an amazing kiddo I have huh! He is such a trooper!

I was also thinking back to when we thought the worst for Roman. To this day, 5 yrs. out from diagnosis, I still have thoughts that pop into my head about Roman and his journey. Trust me the good outweighs the bad. However, at times I have flashbacks triggered by something I see or read or hear. I can’t read an article about childhood cancer without tearing up or seeing a beautiful bald head on TV because that bald head was my son.

I relate just about everything in life with Roman’s cancer. There is no doubt that I do now and have suffered from a form of PTSD because of Roman’s cancer. Honestly, I don’t know how any cancer parent could not suffer a form of PTSD. The fear of losing him is still there, just like it has always been. But, I do believe that Roman will prevail. I have to hang onto that every single day. He is truly a miracle! Each day I get to hear his voice and hear his feet run across the hallway upstairs when he wakes up. It’s the little things that make this mom a happy mom.

Onto some other news…my father in law John “Duppy”, is still having chemo and moving right along. He has already completed a few rounds of a different chemo drug called Topotecan. He seems to be handling this chemo ok. He has already had 4 blood transfusions also. We still pray for a miracle for “Duppy” We love you more than words!

Speaking of blood transfusions, Mike gave blood a week or two ago. I want to take this time to remind everyone, if you are able to donate, please do so. Soooo many lives depend on your “donation” of life. Roman wouldn’t be here without people donating. So please, if you are able to do so, just go ahead do it. You truly are giving the gift of life!

I guess that is it for now. Roman’s birthday is in October. I assume that will be the next time I do an update unless I have something else to share with all of you before then.

God, there isn’t a day that goes by where I am not grateful to you for blessing me with Mike, Sheridan and Roman. As a wife and mother, it couldn’t possibly be any better.
God, please give Duppy the strength he needs to keep on going.
God, please keep blessing our roman as you have.

Love and thanks to all of you for loving and praying for us over the past 5 years!
Jody, Mike, Sheridan and Roman Fariello

May 1, 2012

Hello to our family, friends and new friends! 

Roman went to his 6 month check-up today with Dr. Wagner. It has been a very emotional day for me today. I had no idea that going to this 6 month check-up would affect me like it did. He had blood work done and also a urine sample done as well.

We met a new nurse practitioner today, her name is Debra Kent. She started to examine Roman very thoroughly and after she did she led into more of who she was and why she was examining him. She belongs to the Cancer Survivor Team at Cincy Childrens. As soon as she started talking about the fact that she and Dr. Wagner had been talking about Roman’s history and coming today, my eyes started to well up. She asked us many questions, even about his peanut allergy, and she made him walk and do many different physical tests, and even made him say a sentence to check his hearing and to hear him say his sounds. He did amazing!   

After she examined Roman, Dr. Wagner came in and did his examination too. Roman passed everything with flying colors. We had a long discussion about moving over to the Survivor Clinic in the fall which will happen in November. At that time, Roman will see Dr. Raj and see his new nurse practitioner Debra Kent. Dr. Raj actually has seen Roman a few times already during his protocol treatment, so we know he is a great doc and Roman will be in good hands with him.

At one point, before Dr. Wagner came in and when Debra left to get Dr. Wagner, Mike took Roman to pee in his cup and I had a moment to let it out and cry tears of joy. As I was doing that, Roman’s nurse Miranda came over and put her arm on my shoulder and comforted me. I told her I was crying tears of joy because it has been a long road and a rough road the last 5 years and to finally hear those words come out of Debra’s mouth that Roman was going to the Survivor Clinic, just hit me like a ton of bricks. I had no idea it was going to make me that emotional. I am strong, but in that moment, I had to cry a relief cry for Roman and a cry of thanksgiving to God for allowing him to reach this moment.

I cried also because we will miss Dr. Wagner like no other. This amazing man 5 years ago sat us down and told us the worst news ever, and now, today, told us the best news we could ever hear being NB parents. He told Roman 5 years ago that he would be his quarterback for him throughout his treatment. Well, he was and then some. Up until today when his duty became to pass Roman onto another quarterback. Dr. Wagner is and will always be in my eyes Roman’s lifesaver. He is THE VERY BEST oncologist ever. God def had a hand in who Roman’s quarterback was going to be up until he was no longer needed any more. We will always love you Dr. Wagner! If I have my way, Dr. Wagner will be front and center at Roman’s graduation.

I also talked to Dr. Wagner about Mike’s Dad and his neuroendocrine cancer diagnosis, my mother’s passing at age 59 of pancreatic cancer. Also, Mike’s mom had her thyroid removed, my mom had her thyroid removed and I had the right side of my thyroid removed…again all hormonally related. See…my crazy insight being a cancer mom and what is in my head that had to come out in the form of genetics….Ok….follow me here a minute….I asked Dr. Wagner if there was any correlation at all with Mike’s Dad and my Mom’s cancer, then Mike and I reproduce Roman and then he gets Neuroblastoma…..Hmmmmmmmm! I know, I’m just a cancer mom and I have a ton of cancer knowledge, and I know I’m not an oncologist/hematologist…but….it’s very strange to me that all of these cancers are hormonally related. So….Dr. Wagner said he would talk to the genetics Dr. and get back with us. Maybe we have something there, maybe we don’t…she will let us know.

I don’t have blood results for Roman from today. Hopefully everything will be fine with them as well as his urine. As I was typing this, Roman lost his other front tooth!!! I’d say he’s had a pretty great day!!! Being tossed over to the Survivor clinic and losing another front tooth and getting a visit from the tooth fairy tonight all in the same day!!! WOW is all I can say!

We thank all of you for your prayers and support for Roman. He has needed them and we have used them all. Your support means the world to us! Please remember all of our carepage and caringbridge families in your prayers too. Especially cp:NICHOLASDEFELICE     OUR SHINING STAR

God, we thank you for the gift of today. God, please keep blessing our Roman as you have.

Jody, Mike, Sheridan and Roman Fariello 

April 30, 2012

Hello to our family, friends and new friends!

I just wanted to send out an email letting all of you know... Roman goes for his 6 month check up tomorrow at 1:00pm at Cincy Children's with his oncologist Dr. Wagner. He will have bloodwork done and a complete physical exam. I will update tomorrow sometime after Roman's appointment and let everyone know how it went. 

The farther Roman is out and off treatment and no longer doing scans of any type, the more I am just not sure how to handle my personal feelings...I am obviously thrilled beyond words that we are where we are and Thanking God every single day. But on the other hand, not doing scans anymore is a very scary thing in the NB world, when that's all you have known for the last 4 1/2 years straight every 3 months or 6 months etc. to let ya know what's going on inside the body. I just don't know what to feel other than happy to be where we are with Roman, for we know NB is sneaky and evil. Just pray for good blood results for Roman. We thank you for those prayers:)

Also, please say a prayer for a fellow NB family who is dealing with the worst NB...this family means the world to me...his name is Nicholas DeFelice and we call him OUR SHINING STAR. We have been following this family for almost 5 years now. Please pray for strength and endurance for this family as they wait for more results. cp:NICHOLASDEFELICE   

Thanks to all of you for your prayers and support!
God, please keep blessing our Roman as you have.

Jody, Mike, Sheridan and Roman Fariello

April 25, 2012

A FIVE YEAR ANNIVERSARY TRIBUTE LETTER TO MY STRONG AND
                                                 AMAZING SON, ROMAN MICHAEL …

                   
How many times have I sat down in the past 5 years and had it out with God? Some long talks. Some short talks. Some with quiet tears and some with un-controllable sobbing. Some with down- right cursing and some with screaming at the top of my lungs. Some with waiting for that phone call from Dr. Wagner for scan results, so that I could take another deep breath and go on again with our “normal” daily routine. Some have been at the strangest of times too. Like in the shower or flat ironing my hair or just driving in the car. Over the past 5 years, God has witnessed every single raw emotion that has come from me Roman, a cancer mom. Your cancer journey has brought out the best and the worst in me. But, as I look back son, I wouldn’t change a thing.       

There have been soooo many times I have talked to God, yelled at God, begged God to listen to me, that I have lost count. But I can tell you one thing’s for sure Roman…God had a reason for making you walk the darkest of walks. He had a reason for making our family look thru different eyes on April 25th, 2007. God does not make mistakes. You and your cancer did not just happen for any old reason Roman. No way! It happened for MANY reasons. And now, 5 years later, I can honestly tell you that all of the many blessings that have been poured on our family from your journey, have definitely out- weighed the bad son.   

Today, here we are on your 5 year anniversary of being diagnosed with Stage 4High Risk Neuroblastoma. 5 years ago I thought you’d be taken away from us. 5 years ago, I thought many times “how are we ever going to get thru all of this”. Well, along the way, you have grown from this very sick, little, 18 month old with a stage 4 deadly cancer to a lively, very smart, fun- loving, gentle soul way beyond your years “normal” kid. To see you and look at you, no one could ever peg you to be a cancer kid or for you to have a deadly cancer. You definitely have the battle scars to prove it though.

I have protected you like a mom should have over the past 5 years. I have yelled at docs and nurses and turned heads at every corner to ensure that you were taken care of at any cost. You are my son and I am your voice. I have already moved some pretty massive mountains for you Roman. Rest assured I would move a million more for you if I needed to again, and again and again. I have always been a strong person Roman. But being by your side and walking your cancer journey along with you has given me a strength I have never known. You have lifted your own mom up with a power you didn’t even know you had son. It was with you that I got the deepest strength and you still have kept me going now 5 years later. Not many 6 year olds can say they do that for their moms each and every day Roman. You have changed me and so many countless others Roman for the better. Again, not many 6 year olds can say they inspire and change people like you do Roman. You are one very special kiddo!       

You have had to grow up much faster in ways other kids haven’t. I feel YOU have MASTERED what it is to be the perfect patient Roman.  You have been scanned so many times by big scanners and had to lie there so still without moving and without drugs to help you. You have had to be stuck in your arms, your hands etc. for blood draws and you do not flinch!!! You even like to watch the nurses put the needle in and pick out a band aid afterwards. You have had to swallow the nastiest tasting drugs etc. and you did it all without complaining. You have had to puke non- stop for some 24 hours straight for days/weeks, not because of a tummy bug, but because of horrific chemo to save your life. You have had to endure the worst pain in your legs, head, belly, endure severe nosebleeds etc. and have rage issues, horrible side effects from drugs/treatment while on your journey. You have had surgeries, blood and platelet transfusions and have been put to sleep more times than I can count. You have had to endure numerous strange docs/nurses touching you, poking you and talking to you, even when I knew you didn’t feel like letting them touch you or talk to you. You my amazing son have truly MASTERED being the PERFECT PATIENT and deserve a million PEREFECT PATIENT AWARDS for doing so at such a very young age. After witnessing firsthand what you and other cancer warriors have gone thru, NO ADULT SHOULD EVER COMPLAIN ABOUT ANYTHING EVER AGAIN.

Over the past 5 years, even though you are only 6 years old, you get that you have cancer. You know from the pictures I have shown you, the talks we have had and from the look of the tumor on your right eye, that you have cancer. You know from seeing the pictures of that beautiful bald head of yours that you were one very sick little boy. You have “grown up” with cancer. It is a part of you. It will always be a part of you. You will always have cancer Roman, but just remember son that cancer will NEVER have all of YOU!!! It will NEVER consume who you are or who you were meant to be. I have always answered your questions directly and honestly. I feel that is the very best way to make sure you “grow up” with cancer the right way, it’s the only way. This is your life son. I want you to have the very best knowledge of your cancer and that means arming you with every single personal detail that I have for you from your journey. I will leave nothing out for you.

Our family has been surrounded by so much sadness and death in the past 5 years while on your journey. You are still so young Roman, you have no idea how many lives are affected by this horrific deadly cancer. You know I follow and support many families with NB of all stages from carepages and caringbridge. Some of those families are battling a first, second or third relapse as I write this letter to you. There have been so many kiddos that have gone to heaven way too soon Roman because the chemo didn’t help them like it helped you. You and your sister have both been personally touched by this sadness and death in a way that most kids your ages don’t even begin to know what death is.

When we lost Corey, it was the most difficult of times for us. You Roman, being the kid with the same cancer as your little buddy Corey who went to heaven, left you wondering about death and where he disappeared to. It also left your sissy wondering about you and death and if you were going to “disappear” too just like Corey. As your parents Roman, we always had death on our minds since your diagnosis, but Corey’s death sure did put it in the forefront and made it way more personal for our entire family. It was more than difficult to answer questions I didn’t have all the answers to. But, we made it through and unfortunately we still have questions today. I am sure we will always have questions that will arise on your journey and I am sure we will not always have all the answers to them either. Just rest assured Roman that we do not take any day for granted. We do not take the people in our lives for granted. We do not take precious time for granted. Ever.

Roman, not only over the past 5 years have you had to “grow up” with neuroblastoma, you have had to learn how to “grow up” knowing that a peanut butter cookie could kill you too with having a peanut allergy. That is an awful lot to handle and hard to deal with all at once for a little boy. But you my son, I must say are dealing with everything that has been tossed your way so very well. I know it was hard on you when you were age 2 or 3 knowing that other kids could have yummy treats that you knew you couldn’t have. But, now that you understand about your peanut allergy and really know that a peanut is deadly to you, you get that too just like your cancer. People would say that you’ve been dealt a pretty lousy hand with having cancer and a peanut allergy but you have handled it all just simply amazing my son!   

As we do not know what the future holds for any of us, we do know that you are miraculously defying the odds and growing up to be a fine young wonderful lil’ man! I hope that as you get older Roman, you find it of great importance to somehow give back to the childhood cancer community. You are still too young to really understand how many people truly saved your life Roman. So many people, mostly strangers, helped get you to where you are today son. I will help you and guide you in giving back when it’s the right time for you to do so. May your life story be told over and over again on all of your big milestone anniversary dates. Your story will be unique just as you are Roman!

Many kiddos don’t make it to their 5 year anniversary with Stage 4 NB.  What an amazing gift and blessing your life is Roman! What an amazing gift your life will be to the rest of the world as you grow up and get older to do HUGE and AMAZING things with it!

I have thoroughly loved watching you grow Roman over the last 5 years. It has been a joy and a blessing to see you laugh and breathe and hear your feet hit the floor each and every day son! Whatever lies ahead for you Roman, whether it’s medically, physically, spiritually, emotionally, financially; every way, shape or form, I want you to know that I will be by your side always. God definitely knew what He was doing when He chose me to be your mom. I could not be more proud and honored to be your mom. May God always keep blessing you Roman as only He has proven He can do and has done over the past 5 years.

I LOVE YOU ROMAN MICHAEL!

LOVE, MOM 

 

Then and Now Pics of Roman...click on link....

 https://picasaweb.google.com/lh/photo/z6S1KAbnzTT5QGelrY5Ab8BZGdnWyEa3Hxml2hxw5Vw?feat=directlink

 

April 20, 2012

Hello To our family, friends and new friends!
I am emailing to let everyone know that you have until April 27 to get registered for the Butterfly Walk to get a guaranteed Butterfly Walk t-shirt when you register before that date. The Butterfly Walk is on May 12. We would love it if you could walk with Roman and our family as he celebrates his 5th year anniversary of being diagnosed with Stage 4 NB. If you are unable to walk with us and would still like to help Roman’s team, a donation to Team Rescue Roman would be more than appreciated. Roman knows it’s his 5 year anniversary and he is excited to celebrate that NB has stayed away from him thus far. He realizes how important the day is and what a huge milestone it is for him to be making!   Here is the link to get registered/donate…

 http://www.active.com/donate/2012butterflywalk/2012JFariel

Roman goes to Cincy Childrens on May 1st to see his oncologist, Dr. Wagner, for his 6 month check- up for a physical and blood work. I have some questions for Dr. Wagner for this visit. No health concerns for Roman; just questions about what lies ahead for him like, when will he get tossed over to the survivor clinic and some other stuff. I will update again as we get closer to May 1st.

An update on my father in law “Duppy”…he just completed round 4 of chemo on Wednesday. He needed a blood transfusion today so hopefully this will replenish him and recharge him and he will get some rest for the next couple of weeks and then begin round 5. We love you Duppy!

An update on my sister Coleen…she went to the oncologist and he told her she was a stage 1 colon cancer. The oncologist is going to follow up with her for the next year every 3 months with blood work. Whew!

We thank all of you for supporting us and for praying for all of our family members, especially Roman. We know your prayers have worked! Roman is evidence of that!

God, please keep watching over Duppy and Derney and our family over the next 2 rounds of chemo. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

April 3, 2012

Hello to our family, friends and new friends!
It’s been a whirlwind of cancer news in our family since my last update. Many of you know this already but many of our Roman supporters don’t know… that my sister Coleen was diagnosed with colon cancer. She recently had surgery to remove her ascending colon along with her appendix and a rather large tumor. From her pathology report we do know her lymph nodes are clear. She is recovering now and healing well. She has an appointment with her oncologist on April 11th. We are pretty confident that some form of chemo will be given to her in her treatment plan. I know that all of you will pray for my sister for whatever road lies ahead for her.

My father in law, Duppy, just finished round 3 of chemo and did pretty well with this round. He also just had a CT scan of his chest, abdomen and pelvis to see what the first 3 rounds of chemo were doing and so far the chemo seems to be working on shrinking the cancer. He starts round 4 of chemo on April 16th.

It has been a cyclone of bad news in our family with all of this cancer news. The one light through it all is ROMAN. He is doing amazing! Growing like a weed. Doing well in school. Playing soccer now. His first soccer game was last Saturday. And for a moment I found myself looking at him and my eyes began to well up just watching him run free and kicking the ball with the kids all bunched up together on the field. I thought to myself, wow, there he is, playing soccer like a normal kid…and my tears stopped and I smiled real big. I quietly thanked God for my miracle running out on the soccer field all among the crazy cancer chaos going on in our family now. It reminded me of how beautiful miracles are and how huge a miracle Roman really is.

Which brings me to share…

Click on link below to go to TEAM RESCUE ROMAN’S
page for the Butterfly Walk on Saturday May 12th. There, you can join our team, donate if you are unable to walk with us and read why it so important to raise money for these kids, like Roman. If you do join our team to walk with Roman, our team password is NED…you will need that to get registered. Any questions at all you can email me at Jody.Fariello@gmail.com and I can help you.

 http://www.active.com/donate/2012butterflywalk/2012JFariel

Each year we have fun at the walk and I try to win Best Team Spirit. This year with everything going on with our family, we are lucky to just be physically walking together and the walk will have a different meaning for us. Roman’s 5 year anniversary is April 25th. Rest assured I will have him decked out in something to celebrate the miracle of life that he is.

We thank all of you and love all of you for supporting our family at this time with your never ending prayers for my father in law and now my sister and of course for always Roman. Jody, Mike, Sheridan and Roman Fariello
February 29, 2012

Hello to our family, friends and new friends!
I wanted to give all of you an update on my father in law John “Duppy”. He made it through his first round of chemo which consisted of Cisplatin and Etoposide. He had some side effects over the past two weeks like nausea, lack of appetite, very tired, and he even battled an evil migraine like I do. So, now he has a med for that in case he gets another one in the future to help knock it out.  

Yesterday, he got his port put in on the left side shoulder area to help with future chemo rounds. Round 2 of chemo starts next Monday on March 5th. He will have chemo on Tuesday and Wednesday as well. And, as all of you know in chemo world and from following Roman’s journey with us, each round gets a bit harder and harder. Duppy is in good spirits. My father in law is quite the character and I am quite sure that everyone will certainly know who John “Duppy” Fariello is at chemo… if they don’t alreadyJ     

Mom “Derney” is keeping herself strong and is doing an amazing job being Dad’s advocate and being by his side. She even said that she has me as her “model” for when things don’t go/run smoothly in general. I had to laugh out loud at that one because Mom has seen me at my worst on Roman’s journey the past almost 5 years. All with the very best of intentions, she knew I was Roman’s voice and advocate and when things are just not right you must speak up! So…go get ‘em Mom if you ever feel the need you have to;)

I want to personally thank ALL of my Roman supporters who emailed me, sent me text messages, carepage messages or called me when I sent out the initial update about Duppy giving everyone the news. The amount of responses was overwhelming and Mike and I and our family felt your love and support yet once again. I cannot put it into words how YOUR words have brought us such comfort on Roman’s journey and now with what our family is faced with yet again on Duppy’s journey. It’s because of those words we find ourselves being able to dust ourselves off and face the dark road once again with Duppy as he starts chemo on Monday. I will keep all of you updated. Thanks so much for your prayers and support at this time. Please keep those prayers coming for Duppy. He needs them.

Mom and Dad, just remember we are all here for you both and we love you both more than words!   

God, please keep Derney strong for Duppy. God, please keep Duppy safe and strong for the 2nd round of chemo. God, please give all of us strength for Duppy and Derney as we head into this 2nd round of chemo. God, please keep blessing our Roman as you have.

Love to all of you!

Jody, Mike, Sheridan and Roman Fariello
February 11, 2012

Hello to our family, friends and new friends!

I have very sad news to share with our Roman supporters. Before I begin, the news is not about Roman. It is however, very much about the core, pride and joy of the Fariello family. My Father in law John, our beloved Duppy (as the grandkids call him and as many of you know him as) just got diagnosed yesterday with Neuroendocrine Cancer. It has already spread to his liver, ribcage, sternum and spine. As you all know, this cancer news is devastating to us but is no stranger to our family. Anything that begins with “neuro” is a plague and a curse for our family. Almost 5 years ago with Roman’s Neuroblastoma and now this with Duppy. UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This will be my 3rd “tour of duty” with this cancer thingy; once with my Mom in ’93 with pancreatic cancer, Roman’s cancer and now with Duppy’s cancer. One would call me an “expert” at this by now. My friend Anne said to me on the phone, “Jody, how much can one person take” referring to me and I said to her “apparently not enough Anne because it just keeps on coming”. She then said “God must feel you can handle it because you have proven to Him that you can because you are so strong Jody” but I could tell she was worried about me. I love you always Anne.   

Dad had a liver biopsy on Tuesday. Mom called me with the news yesterday and I was strong for her and Dad on the phone. But as soon as I got off the phone I found myself asking why all over again and the tears started to come. Then, I quickly reminded myself that I am not in control, God is. I wiped my tears and then I had to call Mike at work and give him the news. Chemo will start on Monday for Dad and that he will have the same 2 drugs Roman had during induction chemo for his protocol. Now I say to all of you…how many families do you know of out there that have a 75 year grandpa and a 6 year old grandson who shared the exact same 2 chemo drugs? WOW is all I can say to that common bond. This is one bond I wish was NOT in our family.

Mike and I told Sheridan and Roman last night that Duppy was very sick with cancer. We told them that it was neuroendocrine cancer. We told them where it was in his body. That he was going to have a port placed kind of like Roman’s central line when he had his line in chest. We told them it would be used for chemo. We told them it would make Duppy very very sick and pukey; and that he would have to be kind of like placed in a bubble for a while to keep him safe from all germs that could harm him. We told them they would not see Duppy for a while because of that, but that they could see him on Skype and they understood. We told them Duppy would lose his hair and be bald like Roman was because of the chemo.  

Roman’s eyes were HUGE with sadness and just plain fear. Like he wanted to cry but didn’t. This 6 year old son of mine knew every single word I was telling him and then some. Sheridan asked “why does cancer start” and Mike told her that cells divide and grow normally in our bodies and with cancer these cells divide too fast and go haywire. Both kids were sad and we told them it was ok to cry if they wanted to. We also reminded them that this cancer thingy is no stranger to our family because of Roman’s cancer. Sheridan started to remember some things from 4 years ago. It’s amazing what a then 4 year old remembers.

We told them that it is ok to voice their feelings about cancer and say that cancer sucks because it does. Mike and I both have learned that honesty and openness is the best way to be with them from Roman’s cancer. They have been through so much already at such young ages. The words cancer and death have been used around here for almost 5 years now way more than I would like. But cancer is a part of our lives. You can’t just erase it. Mike and I want them to be fully aware with what is going on with their Duppy so there are no surprises for them as we go forward. As I was telling the kids, I almost lost it at one point, but quickly gathered myself and my strength for the both of them. I needed to be strong for them.           

I have a link below of a picture of Roman and Sheridan with Derney and Duppy so all of you who will be praying for Duppy can see who you will be praying for.

https://picasaweb.google.com/lh/photo/Z-2g3ZB3aAvZJplG0gL7FlcJNRyfAq_NqVjNNor14wo?feat=directlink

Roman’s #1 prayer warrior is his Duppy. He has been since his diagnosis day back on April 25th, 2007. The man wakes up every morning before work and prays for Roman, sometimes even 2 hours to make sure God hears his prayers that Roman remains cancer free and safe. Now, I feel it is our turn to help Duppy get those exact same prayers. Roman has the very best prayer warriors out there. I know God hears prayers. So far, he has heard Duppy’s loud and clear about Roman.

God, please keep Duppy strong through chemo. Please keep Derney strong and all of our family members strong as we travel down the dark path once again together. We thank all of you for your prayers for our family at this time. I will keep everyone posted. Jody, Mike, Sheridan and Roman Fariello    

January 4, 2012

Hello to our family, friends and new friends!

Happy New Year Everyone! Wow 2012 is already here and moving on. We hope all of you had a wonderful Christmas with your families and friends. We certainly did. Sheridan and Roman really enjoyed Christmas this year. Unfortunately, Sheridan caught a tummy virus on Xmas eve and was puking for 48 hrs. But, Santa still arrived and left such fun presents this year for the kiddos. They are definitely getting older now and Santa isn’t leaving what he used to leave like Fisher Price this and Polly Pocket that! Santa was a bit more techy this year. And, of course Santa ate cookies and drank eggnog that was left for him! 

We had a wonderful time visiting friends and going to dinners and just having plain simple fun over the holidays. We went to dinner with Aunt Sissy and Uncle Chet and cousins’ Patrick, Noah and Ciara on New Year’s Eve and rang in 2012 with them playing games and having fun! Then on New Year’s Day, Mom cooked yummy city chicken with sauerkraut and mashed potatoes for good luck in 2012!

2012 is a big year for us. Roman will reach his 5 year diagnosis anniversary on April 25th. That is a huge milestone for him. One that we are going to celebrate somehow… I don’t know how just yet, but we are going to celebrate it very loudly and it will be the most fun rest assured! That will definitely be one day that Roman’s life will be celebrated for the miracle that it truly is! 

Unfortunately, there are some of our closest friends that are battling the NB beast 24/7 non- stop. My heart aches for these moms as I feel I am close to them even though we have never even met. I know they know all of us NB families stick together in both the good and bad. I just wish these two families could catch a break. Denise and Sue, my cancer mom strength is yours from now on and will not stop for both of your amazing boys: Nicholas OUR SHINING STAR and Daniel “D”. I feel sick for them as they have to watch their boys endure horrific treatments after relapses. Both of whom were on an NED path just like Roman and who I have followed for a long long time. My heart is heavy for these families. All I have to offer them is my strength and my prayers and support and a friendly ear if they need it, they know where I am. Love you both!

I hope that 2012 is good to all of you, our Roman supporters. Without all of you and your prayers, Roman and our family would not be where we are today.

God, please give the DeFelice and Depatie families’ endurance to get thru each day and surround them with people to lift them up when they are down, just like you did with us. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

November 22, 2011

Hello to our family, friends and new friends!

Yesterday, Roman had a follow up visit with the oral surgeon to look at his lip and make sure it was healing ok.  After everything we went thru with this entire lip issue, all went well with a less than 3 minute doc visit to look at it and send us on our way right back out the door. There is one remaining stitch that needs to fall out still. His lip looks so much better than it did a week ago. So, all is good in Roman’s lip world.

I cannot believe THANKSGIVING is in two days! This entire year has just gone by so fast. Sheridan and Roman are so excited about Thanksgiving and putting up our Christmas stuff the day after. There is nothing better than having pure NORMALCY throughout the Fariello household. We embrace every single moment of it too.

We have a TON to be thankful for this Thanksgiving. Starting with my children….

I am thankful for…Roman that he continues to be on the path of NED and NB continues to FEAR HIM! He is doing amazing in school! So far, no problems of any kind for Roman: reading, writing and learning at or above target. It doesn’t get any better than that! Roman Michael, we love you son! You never stop amazing us!

I am thankful for…..Sheridan, she is averaging all A’s in everything except for math (not her favorite) where she’s probably a B. She’s earning lots of badges in Brownies and learning how to do different, fun things like sewing etc. Our daughter is growing up right before our eyes and she is just absolutely gorgeous! We love you SheridanBug and we are so proud of you! Keep up the good work!

I am thankful for… my hubby Mike,  who works hard for our family and who allows me to be a stay at home mom for our children. I may not get a pay check. I may not have a fancy title. But, what I do get in return is pure joy in raising our children. I wouldn’t miss anything in their lives for the world!

I am thankful for… my mother in law! The kids call her Derney! I call her MOM! She is ALWAYS there for me when I call her just to chat. She is ALWAYS there for us when we need her for doctor appointments or anything at all. Mom, we love you and thank you for just being there for us! And, for being my calming voice and the voice of reason when I need that tooJ I love you!

I am thankful for my…sisters…and BLACK FRIDAY SHOPPING!!!! I love you both and can’t wait to spend the whole day with you and have some much needed sister bonding time together!!!! 

I am thankful for….my friends….you all know who you are. Some of you I talk to daily. Some of you I text. Some of you I do dinners with. Some of you are far away physically but never far away from my heart. And some of you time goes by us but we can still pick up the phone as if we just stopped talking the day before. I love all of you!

I am thankful for.….ME! I am not sure if any of you are aware of who Joel Osteen is. Well, I watch him on Sundays when I can. This past Sunday his message was about being who you are and embracing who you are, even your faults. Love the fact that you are unique. Well, the older I get (I will be 42 in Feb) the more comfortable I am in my own skin. The more comfy I am with what I say, how I say it and when I say it. I have never been one to “hold back" anyway. Even to doctors! LOL  I am who I am. I am an outgoing person. I am a people person. I am a caring person. I am loving person. I am very opinionated. I am aggressive. I have a simple motto… If you don’t like what I say, there’s a real simple solution…don’t listen to me. I have heard other older women describe being “comfy in their own skin” just as I have described it. I guess it comes with the 40’s. Wherever it came from, I am who I am and I like it. Joel would be proud!   

This Thanksgiving embrace who you are; faults and all. Love yourself enough to be yourself. Enjoy this special time with your family and friends. Time is precious.
To all of our carepage/caringbridge families: sending strength to all of you as you continue on your different paths. We are thinking about all of you.

Thanks to all of our Roman supporters! Without your love, support and prayers for our son and family, we would be lost. We thank you so much and Happy Thanksgiving!

God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello    

November 17, 2011

Hello to our family, friends and new friends!

We got a call from the Oral Surgeon with Roman's pathology from this "thing" they removed......it was a benign growth called a Pyogenic Granuloma. Thank You God! Thank you everyone for your prayers for our son. They were answered!!!!! We were so worried with Roman's cancer history. This "thing" was growing, changing colors and bleeding and it scared the you know what out of us. We had no clue what it was but our first thought was melanoma since Roman is at a much higher risk of getting a secondary cancer.

If you look this up, most of these are caused by trauma. Well, I argued with this surgeon that Roman did not injur himself or bite his lip or whatever. Mike did some research on it and found an interesting article. The article stated that a small amout of people who get these things took ACCUTANE. Now, we don't know for sure that that's what caused this on Roman's lip. BUT....we do know for sure that Roman was on ACCUTANE for 5 months as part of his protocol and he took ALOT of it. So, to all of my fellow NB families who follow us, just take mental note of what happened to Roman's lip and mental note of ACCUTANE. Very interesting! 

We thank all of you for supporting us as we jumped another hurdle. Roman will see the Oral Surgeon on Monday at 2:00 to make sure his lip is healing ok and that his stitches hopefully fall out by then. that's all I got for now. And... Please keep all of our carepage/caringbridge families in your prayers.

God we thank you for keeping Roman safe. We thank you for giving me, this crazy cancer mom here, the strength and the courage to stand up for my son, even when I raise my voice and get angry. You know I'd move the highest mountains and walk on fire for Roman and Sheridan and would stop at nothing and back down from no one for them to get my voice heard. That's why God you chose me to be their Mom. God, please keep blessing our Roman as you have. 

Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello

November 14, 2011

Hello to our family, friends and new friends!

First let me say it has been a VERY long day. Roman had his lip surgery at 10:00am this morning and he did amazing. Mom (Derney) went with us. They took him back and he didn’t even flinch with getting his IV as usal. That boy of ours NEVER EVER stops amazing me with his strength! The nurses made a comment about him being so still and acting better than most of their adult patients they have. I commented back to them “he’s unfortunately used to this, he has cancer and I told them he had stem cell transplant, 12 rounds of local radiation etc.” They had one of those looks on their faces of open mouth and insert foot now! The nurses got his IV in no problem and gave him Versed and surgery lasted for about 45min to an hour or so.

This surgery did not take place at Cincy Childrens today. Trust me, if I had my way, it certainly would have and should have. It would have saved me a ton of stress and grey hair. I don’t even know WHY it didn’t take place at our Cincy Childrens Hospital. I am NOT a happy cancer mom right now because of this. I know Roman is 4yrs out from diagnosis, and I know that “cancer wise” he appears to be fine and doing well. BUT………….. When I come to you, or call you with a concern of ANY KIND it should be addressed and within a timely manner!!!!!! So, because of all of that first, surgery today instead took place in Union KY at the Oral Facial Surgical Center which was referred to us by our dentist who is also a Cincy Children’s dentist. In other words, it appears we were handed off or brushed aside and put on the back burner because our lip issue just wasn’t that important!

Now, set aside the fact that this place had no idea about Roman’s cancer history, I wanted this “thing” the doc removed to go to Cincy Children’s. So, I had a lovely conversation with the oral surgeon this morning before surgery. Let’s just say it didn’t go very well. All he and his nurse cared about was tooting University of Kentucky Pathology’s horn. I only stressed I could care less about their credentials…I just wanted Roman’s “thing” to be sent where all of his cancer history is already. Gee, that just makes too much sense! But again, it’s not their fault, not of this would be happening if we were where we were supposed to be anyway!!!!!! UGH! So, Mom finally jumped in and saved me from verbally attacking this doc and his nurse and made peace where peace needed to be made. Thanks you Mom!

In the recovery room, the doc and his nurse came in to go over home care instructions of 6 dissolvable stitches etc. He then tried to “apologise” for his earlier words with me. I cut him off with asking him “just how many crazed cancer moms do you deal with who have 6 year old lil boys who really came close to death??? Of course he couldn’t answer! His reply…”I can’t even imagine, I have 2 healthy kids”….and I cut him off again and I said, “Then don’t imagine it, cause you can’t!” He then said Pathology will be in on the 21st. That’s next Monday when we have our follow up visit with him to make sure his lip is healing ok. UGH!

The other thing that pissed me off to no end about this doctor is that he kept saying Roman’s lip was caused by a trauma. I wanted to come across the room at him with my pms crazed cancer mom hands and physically shake him! Roman did NOT cause this “thing” on his lip to grow!!!! He didn’t tell it to change colors!!!!! He didn’t tell it to bleed the past week and half!!!!! UGH! I wanted to say to him are you flippin’ kidding me! STOP saying my son bit his lip and caused this!!!!! COMMON SENSE knows that if it were trauma, it would’ve healed by now on its own. Traumas don’t grow, and change colors and bleed!!!!!!!!! I don’t wear a white coat and I flippin know that! UGH!

Ok, I feel better! I needed to get all of that out! This week is going to be a long week for all of us. We have to do our best to try and find some “normalcy” as we wait for pathology to come back on this “thing”. Roman has to have ice on his lip every 30 min on and off to keep the swelling down. He should be able to go back to school tomorrow. I will be a nervous wreck about it getting bumped, hit etc. UGH!!!! More stress!     

I wanted to let everyone know we appreciate your continued love, prayers and support more than you will ever know. Today, getting all of your emails, face book messages, text messages and phone calls has lifted me in ways I can’t even explain in words. I have been an emotional wreck and all over the place. It’s just the fear of the unknown. Once I know what we are dealing with, I will be fine. It’s the unknown I have trouble dealing with. Thank you everyone for loving us. Thank you for listening to me vent. I have always said, this is my let it out place. I did cry in front of Roman this morning. But I quickly regained my strength for him.

Thanks again everyone! God, please keep blessing our Roman as you have. Please let this be a benign growth of some kind. Please let his lip heal with no problems or surprises. And God, please give Mike and I the strength we need to get thru this next week and weekend. Jody, Mike, Sheridan and Roman Fariello    

November 10, 2011

Hello to our family, friends and new friends!

I have some health news to share about Roman. Some of you on Roman’s carepage did get a Roman Update last week and those of you on my Roman Update list did not get one from me. So, very little of what I am about to say might have been heard already by some of you. And then I will bring everyone up to date as of today.

Last week, on Tuesday Nov. 1st, Roman had his 6 month check up with Dr. Wagner at Children’s. Everything is fine there and all is ok. A week prior to that, Roman had his 6 month check up with his dentist Dr. Greenhill. All was ok there. Roman has already lost his 2 front bottom teeth too!

Mike and I did have one small concern for both doctors to look at….Roman’s lower lip on the left side. About a month ago, he had nothing there but a tiny, brown freckle. As the past couple of weeks have gone by, we have watched this “thing” grow on his lip. It doesn’t look like a blister, or like he hurt it in any way. Both docs have seen this and didn’t know what “it” was. Since Roman’s visit last Tuesday with Dr. Wagner, this ‘thing’ has bled and changed colors. So, with his cancer history, I have been a crazed cancer mom thinking the absolute worst like skin cancer on his lip, tumor etc. It has been there for a few weeks, not going away. UGH!

It doesn’t take rocket science to realize that a kid with Roman’s cancer history, this thing NEEDS TO GO whatever it is! So today, Roman had a visit with an oral surgeon (referred by Dr. Greenhill) by the name of Dr. Lucas. He examined Roman’s lip and mouth and wasn’t sure exactly what it was but wanted to send it off to find out what it was. He also wanted a picture of it. All in all, now having 3 doctors look at our son’s lip and not know what it was doesn’t give us a warm and fuzzy feeling inside.   

Roman will have oral surgery this coming Monday at 10:00am. He will have IV sedation and a shot to numb him his lip. He will have a couple of dissolvable stitches afterwards. He will go back in a week to see the surgeon to make sure everything is healing ok. This “thing” that the surgeon removes from Roman’s lip will be sent to pathology. We should know results of that in about a week. It will be one of the longest weeks for Mike and I to wait. You’d think that we’d be used to waiting for stuff like this as cancer parents but NO! UGH!

So, we need some prayers for Roman this Monday at 10:00am that surgery goes well and that his lip heals well. Prayers that Mike and Jody are not thrown any unwanted ugly surprises as far as Roman’s pathology report from this. Prayers for me that I calm myself down now, this weekend, Monday, and all of next week.

God, please keep blessing our Roman as you have. Thank you everyone for your prayers! Jody, Mike, Sheridan and Roman Fariello

October 7, 2011

Hello to our family, friends and new friends!

TODAY...we celebrate the true miracle that Roman's life is.
TODAY...we celebrate another reached milestone in Roman's life.
TODAY...we celebrate Roman's 6TH MIRACLE BIRTHDAY!!!

Roman Michael we love you, we are proud of you and we hope you have a blast tonight at your LASER TAG PARTY with your bestest friends! You son deserve to have every kind of kid happiness possible in the world!

AND.......my most wonderful friend and food/allergy warrior mom Robyn O'Brien, founder of www.ALLERGYKIDS.com wanted to spotlight and feature Roman on his 6th Birthday today (she had featured him at diagnosis).......please go to www.ALLERGYKIDS.com and on home page right on the front you weill see a ALLERGY KIDS BLOG.... right there you will read my very own words to Roman on his 6th Birthday, telling our brief story! Robyn, THANK YOU for allowing me the freedom and giving me a platform to share with your readers Roman's story! And, mostly for allowing me to shout it from the roof tops the love I have for my for my son and what he has been thru and what our family has been thru. We love you Robyn! 

God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello  

October 4, 2011

Hello to our family, friends and new friends!

Roman's ECHO came back NORMAL! HOORAY!!!!! His heart is great and working good and we could not be more relieved with this news. He did absolutely great for his echo and he got to watch his heart on the monitor too. His next clinic visit with Dr. Wagner is set for November 1st next month. No more scans, so just bloodwork and clinic visit. Until then more fun things going on here.... Roman will be celebrating another milestone... on this Friday the 7th....he will be celebrating his 6th BIRTHDAY!!! I cannot believe he is going to be 6 already! He truly is a walking miracle! I look at him and he IS meant to do HUGE and AMAZING things with his MIRACLE life he has been given.   

Thanks to all of you for your prayers and support. We could not have made it the past 4 1/2yrs. without you! God, we thank you for keeping Roman's heart safe from chemo damage. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello    

October 3, 2011
Hello to our family, friends and new friends!

Fall is already here! Wow how fast time goes by! The kids are doing very well in school and Roman got picked to be Panther of the Month! He gets an award etc. Sheridan is so jealous of him because she has been up at school for over 3 years and now in her 4th year and still has not been chosen for Panther of the Month. Roman is in his 2nd month of Kindergarten and gets chosen:) Too funny my kids are! Nothing like some good 'ol fashion sibling rivalry. Anyhow, Mike and I are so proud of both of them, they both are doing very well in school.

No onto some medical info about Roman......Tomorrow, Roman has to have an Echocardiogram on his heart at 10:00am. This is to check to make sure everything is working correctly as it should. Many kiddos suffer from side effects and heart issues after chemo. The chemo is so hard on the heart. Roman's heart has been working well before treatment and right after treatment. He hasn't had a heart test until now since right after his transplant. Most of the side effects to the heart, usually start at or around the 5 yr period after treatment.

So, please keep Roman in your prayers tomorrow as we make certain his heart keeps working as it should. That no problems are found and he continues on the road to being nothing but healthy. I will keep everyone updated as I find out the results of his Echocardiogram.

God, please keep blessing our Roman as you have. God, please keep his heart safe. Thank you everyone for your prayers and support!

Jody, Mike, Sheridan and Roman Fariello          

September 1, 2011
Hello to our family, friends and new friends!

 Here is the SAVING ROMAN video (2 yrs ago) to watch and then read my update…

http://youtu.be/ghlifCf54x4

Today marks the first day of CHILDHOOD CANCER AWARENESS MONTH! I want to share with you on such an important day, what just happened right here on our living room floor about 45 minutes ago…

Roman wanted to watch his video of when “the people” (Whitecoat Strategies) came to our house to interview our family for the BIO Convention a few years ago. So, I pulled it up for him on his Rescue Roman website on my laptop and put it on the floor for him to watch. I thought nothing of it since he’s watched this video and the channel 5 news video of himself when he was in treatment many times before.

I watched him watch his video. His eyes were glued and he barely blinked watching it. His face almost looked to me as if he wasn’t sure what expression he should have while watching the video. The video lasted about 7 minutes. He watched the entire video. After it was over, I looked down at him and he looked up at me with a sad face, almost pouting like something was wrong…I asked him “Roman, what’s wrong buddy”…he didn’t reply, just stared right at me, like ready to cry.

I asked him again, “Roman, what’s wrong”…”didn’t you like seeing yourself in your video”…..well, needless to say that I WAS NOT PREPARED MENTALLY and/or EMOTIONALLY for what came out of his mouth and his reaction to watching his video that he’s seen numerous times.

He said, as he was climbing onto my lap to bury his head on my shoulder…”I’m mad at cancer”…..this was the very first time on our journey where he was visibly upset about having cancer. I almost lost it and teared up as he was climbing on my lap. He couldn’t see my face thank God because it was on my shoulder, but, I quickly bounced back because I wanted to answer any questions he may have had. Mike even asked him if he was upset seeing Mommy and Daddy cry in the video, and he gave no reply. He just stared sadly at us.

I assured him that “Mommy and Daddy were also very mad at cancer just like he was and that reaction was perfectly normal to have.

It just caught me off guard because he’s watched himself many times on video and has never said a thing about them. Now, it is finally starting to sink in that he was a very very sick little boy and he is realizing more things now because he is almost 6 yrs old. I told him also that “cancer and neuroblastoma will always be a part of his life, it’s who he is”. I squeezed him tightly and held him and rubbed his back.

I’m not sure if I said the right things to him. I am not sure now if he is scared or whatever. One thing’s for certain…He is growing up and is smart as a whip. This journey is forever changing and evolving as Roman gets older. And this cancer mom, was so NOT expecting what happened tonight and what he said to Mike and I. I also know that this is the beginning of many many unpleasant conversations we will have with our son about him having this deadly disease. There is no book out there that tells me the right things to say to him when he asks questions or comments on things. He will Im sure have a ton more...I just hope I answer all of them the way I should.

How fitting is it that he watched his own cancer video on this very first day of CHILDHOOD CANCER AWARNESS MONTH. God, please give Mike and I the strength to be strong for Roman and answer any and all questions that I know will come on this journey. God, please keep blessing our Roman as you have.

Thanks everyone for being such a great support for us. Please spread the word about this month being CHILDHOOD CANCER AWARENESS MONTH. Roman thanks you. Jody, Mike, Sheridan and Roman Fariello     

August 17, 2011
Hello to our family, friends and new friends!

Click on link to see pics of Roman's first day!!!

https://picasaweb.google.com/jody.fariello/FirstDayOfSchool?authuser=0&authkey=Gv1sRgCNHC9tm6wPmsmwE&feat=directlink

I just wanted to share with you today that ROMAN STARTED KINDERGARTEN THIS MORNING!!! It was such a great send off for him! He enjoyed his first day and is looking forward to going back again tomorrow! Sheridan started 3rd grade today too! It doesn't get any better than this with a day like today! God, we thank you for the miracle Roman's life is and we thank you for this beautiful day for our family! Hope you enjoy the pics! Jody, Mike, Sheridan and Roman Fariello  

August 10, 2011
Hello to our family, friends and new friends!

Click on link to see pics from NB Conference and SheridanBug’s  8th B-day….

https://picasaweb.google.com/jody.fariello/SherS8thBDayNBConference?authuser=0&authkey=Gv1sRgCPmpo8GZjMuo0wE&feat=directlink

We have been very very busy in the Fariello household. We now have an 8 yr. old in the house! SheridanBug celebrated her 8th birthday on July 21. She was soooo excited to get an American Girl Doll. To see the pure happiness on her face when she opened up her present was simply priceless.

Roman has cause for celebration too! On Monday August 1, he completed another huge milestone…. he got his FINAL immunization (chicken pox) shot! HOORAAAAAY Roman! So proud of you! It has been a long 2 years to play catch up with all of these immunizations, but we finally made it. Safety was my concern for Roman getting all of these shots all over again for the past 2 yrs. I wanted them spread out as much as possible and not given to him all at once. My pediatrician’s office was so great about working with us and for allowing me to have my fears about Roman getting these shots all over again from his transplant. This little boy who I gave birth to, does not have the same body/body chemistry due to being altered from chemo and radiation…giving shots to a non- cancer kid is scary enough, giving shots to Roman made me a nervous wreck for the past 2 years. Soooo, I am just thrilled that he is finally done and ready to start school on August 17!  No more shots for the next 5or 6 yrs. Go Roman!

The last weekend in July, Mike, my in-laws, the kids and I all went to Chicago for the 9th annual CNCF Neuroblastoma Conference. This was my 3rd year attending and I must say, I will never miss going if I can help it. I enjoy it so much. It feels so good to be able to sit in a room full of other families that have the same feelings that I have about things.  Who look at things the same way I do. Who can have a discussion about what bothers us as cancer parents and what we think should or should not be important in one’s life etc. Just that feeling of total acceptance is how I describe being with my fellow cancer parents. One thing is for sure… Our paths may be different but our kiddos all battle the same NB beast. It is pure therapy for me to talk to my fellow NB cancer moms. Hug them and even cry with them. To my fellow NB families that have never even thought about going to the NB conference, you need to really reconsider and plan on going next year. 

I promise you will be glad you went.

My kids had a blast in the kids’ room while Mike and I and my in-laws attended the conference. They had so much fun! I cannot say enough great and wonderful things about Kenna Anderson (coordinator of kids room) and all of the volunteers that helped make the kids feel safe, loved and of course made them have a blast! Kudos to president and founder of the CNCF, Pat Tallungan, who is so masterful in putting the conference together for all of us NB parents across the country and even the world. Families came all the way from Australia to get any and all info they could about this deadly disease that our children unfortunately have. It just goes to show you that one mom (Pat) will stop at nothing for our children and keep her son Nick’s memory alive who battled NB and ultimately went to heaven way too soon. Pat, we thank you from our hearts for allowing us to come together as one big group and feel connected to other NB families and for arming us with the latest knowledge about this beast our kiddos fight.

So, we are winding down our summer and getting ready for school to start on August 17. I cannot believe that Sheridan will be in the 3rd grade and that Roman will be starting kindergarten. I am a nervous wreck about his peanut allergy and school. But I know I have to let that fear go and just pray that we never have to use his epi-pen. You better believe I will be a permanent fixture up at school this year, especially in Roman’s classroom. Even if I’m not picked to be room mom, I will be there for everything and anything that I am allowed to be. I have faith too that Roman will do the right thing and realize that he is just going to be a different kid…not just because of his cancer, but because of his peanut allergy too. He already does a good job about his allergy, I just hope in time as he grows older he does just as well with understanding how deadly his cancer is and what a miracle his life is.

I want to end my update on a positive note…with so many of my fellow NB families who have already lost their beautiful kids or who are dealing with relapses, I want to share a true NB Survivor story with you…

His name is Seb (short for Sebastian). I was blessed to have met Seb 3 yrs. ago (he was 19 then) in Washington DC for the Cure Search march on the capitol. Back then, I was an emotional wreck because we just lost sweet ^^Corey^^ and my emotions were all over the place. I was in fear for Roman’s life. I still carry that awful fear for Roman’s life daily, but I have learned how to manage it a bit better as each day and time goes by. 

This year at the conference, Seb made me realize even more what a miracle we have in Roman. The whole time Seb was speaking (which he did so amazingly well) there was not a dry eye in the conference room. Seb is a miracle walking. His mom was front and center, recording his every move on stage as he was speaking. She looked so proud and so blessed that her son was even breathing, much less speaking to a room full of parents needing HOPE. And Seb gave all of us that HOPE at the conference. All I kept picturing was Roman standing up there, speaking to families and giving them HOPE, just like Seb was doing.

As I hugged Seb, I felt such happiness for him and for his life. A feeling of complete peace had came over me. I felt that Seb was meant to do what he is doing. And somehow, in my crazy brain, I feel that Roman will carry on the torch and do what Roman is meant to do as he gets older too. I am hopeful that Roman and Sheridan will want to give back as they both get older. The sky is the limit. One thing I heard Seb say to everyone at the conference is to take each moment and cherish it. Not that we as cancer parents don’t already live by that statement…but…to actually see this 22 year old young man, who had been down the same ugly path that Roman has been down, living in his own words and in the flesh up on that stage was just a beautiful thing to me. Life is beautiful. Breathing is a blessing. Thank you Seb for “doing what you were meant to do”…for that, this cancer mom is forever grateful.

Thanks to all of you for continuing to pray for us and our care page and caring bridge families. Your support has never diminished for over 4 years now and for that we thank you.

God, please keep blessing Seb and our Roman as you have.  Jody, Mike, Sheridan and Roman Fariello                          

June 30, 2011
Hello to our family, friends and new friends!

It’s been a while since I’ve updated last! Time just gets away from me as we are enjoying every single piece of “normalcy”. From Roman graduating from preschool at the end of May to our vacation just last week in Destin FL. We have had a blast since my last update.

Enjoy the pics from Roman’s graduation and our vacation to Destin in the link below….

https://picasaweb.google.com/jody.fariello/Destin2011?authkey=Gv1sRgCMOZ5uvfvsqo9QE&feat=directlink

Health wise, Roman is doing amazingly well. Growing like a weed. He went for his Kindergarten physical 2 weeks ago and he weighs 48 pounds and is 46 and a half inches tall. He also got another  MMR shot in the arm. I thought that was going to be his very last shot to get all caught up from his stem cell transplant but…...Roman has to go at the very beginning of August for another Chickenpox  (Varicella) booster….thanks to the state of KY’s new immunization law. UGH!

After he gets that shot, he WILL be all caught up from having his immunizations wiped out from his transplant back in Oct. ’07.  Roman is more than ready to start Kindergarten on August 17.

We also went to the allergist on that same day as his pediatrician. The allergist filled out a ton of paperwork for Roman to have his Epi-pen Jr.’s at school too. Roman’s peanut allergy required more paperwork to be filled out than his Stage 4 Neuroblastoma! Go figure! To all of my fellow allergy moms out there, I am sure you can relate to the mountain of paperwork that is required for an allergy, specially a peanut allergy at school. Roman’s school nurse will have a set of epi’s in her office as well as Roman’s teacher will also have a set inside his classroom. That makes me feel pretty good. I would be lying if I told all of you that I was not nervous about him starting at the big school in August. I know they take peanut allergies very serious, but, let’s face it…there is NO ONE that can take better care of your kid than you. That’s how I feel.

Our vacation to Destin FL was absolutely so much fun! We had awesome weather and the kids loved the crystal clear ocean and the little fishes swimming at their feet. We went bowling, played black light mini gulf, and drove Go-carts. The kids’ favorite thing to do was to go to an arcade called Fat Daddy’s. They LOVED playing all the games and getting all of those tickets and exchanging them for prizes. Mike and I had fun playing games too! We also went to see Aunt Jenn’s Mom Barb, who works at the Children’s Science Center. The kids had hands on learning fun and we got to see Barb. Thanks again Barb!

The next big event for the Fariello family will be a trip to Chicago for the Neuroblastoma Conference. We are looking forward to meeting new NB families as well as seeing some of our NB families we have known for a long time now. I am excited this time because it will be the first time Roman and Sheridan will be attending the conference. They will have so much fun with the other kids in the Kids Room. Derney and Duppy will also be attending the conference with us as they were a huge part in Roman’s transplant care etc. It will be good for them to go and meet other grandparents that attend the conference.

So, that’s all I got for now. Please, continue to pray for our fellow carepage and caring bridge families. Many of them need miracles. As always, we thank you for your continued support and prayers for our son Roman and our family. God, please keep blessing our Roman as you have.  Jody, Mike, Sheridan and Roman Fariello

May 17, 2011
Hello to our family, friends and new friends!

https://picasaweb.google.com/jody.fariello/RomanSScansMay2011?authkey=Gv1sRgCMvlhZaRvr2EMw&feat=directlink

Pics of today at the hospital...click on the link above...

WOW it has been the most stressful 24 hrs for Mike and I….and…. I have WONDERFUL NEWS….ROMAN’S CT SCAN OF HIS HEAD, CHEST, ABDOMIN AND PELVIS CAME BACK CLEAR!!!!!! HOORAY!!!!!!!!! THANK YOU GOD FOR THE PRECIOUS GIFT OF TIME!!!!!!!

Roman did absolutely amazing today as always! He is so brave and so strong. We had the scans then went to clinic to see Dr. Wagner for a visit. Our visit with Dr. Wagner went very well. We knew right away as soon as we saw the doc that Roman’s results came back clear of his chest, abdomen and pelvis…but at that time, we didn’t have head results. UGH! We didn’t get a call from Dr. Wagner until around 3 this afternoon.

Talk about stressful…I was physically ill waiting for that call. I cannot explain it other than the stress is unbearable and I was being affected in the worst physical way. As soon as we got the call, I called my best friend Anne, since we were talking on the phone when Dr. Wagner called here. After I gave Anne the great news, I called my sister Coleenie at work. At that time, when I heard her voice, I just broke down and cried, sobbed tears of relief and joy with her on the phone. I had reached my breaking point of needing to release all of that stress and my sister was the one who got it. Coleenie I love you and thanks for letting me cry it out today with you.

From our visit today, we also learned that Roman’s blood work all came back normal too. We discussed some things we needed answers for with Dr. Wagner. One thing that has been on my mind is Roman’s heart. There are so many harsh side effects that our kiddos may or may not get with all of the chemo and radiation they get for treatment. That being said, Roman will have an ECHO done on his heart here real soon as they can get it scheduled for us. One of the chemo drugs he had was called Doxorubicin and it is very hard on the heart. Roman had this drug for 4 rounds and it ran continuously for each round he had. Dr. Wagner said effects show up anywhere from years 5-10 after treatment. They will keep a close eye on Roman’s heart along with everything else too.

Another topic of discussion was using the term SURVIVOR. I asked Dr. Wagner when did HE feel it was appropriate to use that word with NB kids.He replied, “there are no particular Neuroblastoma guidelines they follow to call a child a survivor…he said they follow the same guidelines for a leukemia and another cancer that I cannot seem to remember what he said, but leukemia’s survivorship is at 5 years post diagnosis”. So, Mike and I have never called Roman a “Survivor”. I guess I am always one to look at the glass half empty, because I am one to not let reality slip away from me. Our reality all along was that Roman had a 33% chance at surviving this disease. It may be a coping mechanism looking at the glass half empty, but that’s just the way I deal and cope with our cancer reality. 

Dr. Wagner quickly came back with all the pluses Roman had at diagnosis and we went over those. Even after all of that discussion, Dr. Wagner still reminded us that kids do relapse as far out as Roman is…it’s just that with each passing year, that chance diminishes even more. So, Dr. Wagner told us to tell people that ask…Roman is “technically” not a “survivor” until next year April 2012, where he will be 5 years post diagnosis...that does mean he is CLEARLY out the woods then..but that the chances for relapsing get smaller each year.

We talked about school coming up in the fall for Roman starting kindergarten. Dr. Wagner wants to keep an eye on Roman and how he does in school because many NB kids suffer from neurological learning issues from all of the chemo and radiation. I pray Roman will be fine, and in preschool he did amazing. Dr. Wagner said if anything should come up, we can have Roman tested at the hospital and go from there.

Finally, after all of the stress of waiting for Scan results today….we decided that in 6 months (November) for Roman’s check-up…we will NOT BE DOING ANYMORE SCANS...only a clinic visit and blood work. Mike and I are more than ready for that to happen for Roman. Yes, it is VERY scary for him to go without any type of imaging…however…this means, that Roman is doing well enough to go without and we are confident enough to make this move for him. Dr. Wagner was confident too or he would’ve never allowed this move for Roman. He will no longer have to be exposed to any kind of radiation. For that, Mike and I feel we are making the right choice. And…for my own physical and emotional well- being and how the stress wreaks havoc on Mike and I, we are so grateful to even be in this position to do away with scans all together… because we know so many kids that NEVER made it to this point.

Finally, I want to say to all of you, our Roman Supporters…THANK YOU for being there for our son and our family. I know many of you feel so helpless when scan time comes around because there really isn’t anything you can do other than pray…but you do help…by emails, messages, texts, facebook comments etc. I read them all and in each one I find such strength to help me get thru. I share them with Mike too and we both appreciate each and every one of you for your continued support, love and prayers for Roman. Roman really has an army behind him and what an army it is! Thanks so much! Our hearts are so full!

Roman graduates from preschool on Thursday night and you know I will take plenty of pics. I will be a sobbing, blubbering mess!

God, we thank you for the precious gift of time. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

May 13, 2011
Hello to our family, friends and new friends!

The Fariellos have been busy! Busy is good! Pics from the Butterfly Walk...

https://picasaweb.google.com/jody.fariello/ButterflyWalk2011?authkey=Gv1sRgCKTX9MrLoObv-wE&feat=directlink

A few things to share….The Butterfly Walk was held on Saturday. The Rescue Roman Team was so awesome! Roman and Sheridan both get so excited for this walk each year. I too enjoy each moment with our family and friends as we walk to support Roman and all of the other cancer families. I want to shout out to my GF in PA…ELAINE NICHOLS…WE THANK YOU FOR ALL OF THE FUNDRAISING YOU DID FOR ROMAN AND OUR TEAM IN THE GREAT STATE OF PA!!! WE LOVE YOU AND OUR HEARTS ARE FILLED BECAUSE OF YOU GF!!!! Thanks so much to EVERYONE who DONATED for the team or WALKED with us!!! YOU were a part of a record amount of money that was raised this year….. over $81,000!!!! THAT is AMAZING for our children with cancer!!! WELL DONE!! I will have a team total when they send that to me and I will let everyone know then what the RESCUE ROMAN TEAM had raised this year.

Sheridan is winding down with both soccer and Brownies for the year. Roman and Sheridan are both also winding down for school for the year. Sheridan’s last day for 2nd grade will be May 27. Roman’s preschool graduation is next Thursday May 19 in the evening. I cannot believe how fast time goes by.

Roman’s graduation will be bittersweet….I will be sobbing because I know it truly is a miracle that he is even graduating but sobbing also because I know so many other kiddos that didn’t get to graduate from preschool. The main kiddo on my mind would be sweet ^^Corey^^. I know ^^Corey^^ will be with Roman as he graduates. It is a milestone for Roman and he will be heading off to kindergarten in mid August. I will take plenty of pics so everyone can see our lil graduate! We are soooo proud of you Roman Michael! SheridanBug, we are equally proud of you as you did awesome in 2nd grade this year and reading like a 4th grader already!!! We love both of our blessings more than words.

On Tuesday, May 17th, Roman will have his 6 month CT Scan of his head, chest, abdomen and pelvis, blood work and clinic visit with Dr. Wagner. We have been busy, and being busy has helped me to not think about scans…however…now until Tuesday, it will consume me like scanxiety usually does. I try to just mentally prepare myself for this every 6 months, but I always end up feeling the same way and having the same fears.

I will update on Tuesday as we get results from Dr. Wagner. I know prayers will be said for Roman and we certainly need those prayers to keep Roman NED.

That’s all I have for now until Tuesday. Please pray Roman remains NED always and forever. Thanks to all of you for your continued love, prayers and support for our family…4 years and counting.  God, please give Mike and I the strength we need to get thru Tuesday’s scans. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

April 25, 2011
Hello to our family, friends and new friends!

14,119……………………….  This number obviously means nothing to any of you. BUT….on April 25th 2007, 4 years ago today, our son Roman became a part of that number. That number represents how many Childhood Cancer cases that were reported to the NCI (National Cancer Institute) in 2007. On that dreadful day in that dreadful year, our son became 1 of  14,119 kids who were told they have a deadly childhood cancer.  Link below are pics of Roman then and now!!!

https://picasaweb.google.com/jody.fariello/Easter2011?feat=directlink

As I look back on 4yrs ago, I still get that uneasy feeling when Dr. Wagner sat us down and presented us with the worst hand of cards ever. Being told that your son has a 33% chance to survive was more than overwhelming back then. Still is today, however, I have learned quite well how to cope with that number on a daily basis. I really don’t give it power. It is a number to me. I don’t like the number, but I deal with it rather well.

It’s been both a long and a quick 4 years on this cancer journey with Roman. I have learned so much from my son who is just 5 and a half. His strength and courage is admirable and his laid back personality makes me calm down when I am about to lose it. There is not a day that goes by where I don’t look at him in total awe.

There are so many things that I wouldn’t change in the past 4 years. The kindness from total strangers that still amazes me and tugs at my heart. The love and support from people who Roman’s story has touched, or my words in an update has touched, has been a huge part of what keeps me going as a cancer mom. I feel I have such a great sense of responsibility when I do a Roman Update because I want everyone to really live in the moment. Grab life. Dive right in. Learn from our experience WITHOUT having a child with a deadly cancer. See thru my eyes as a cancer mom WITHOUT being one. Love more. Laugh more. I just want to share everything so you get sort of a bird’s eye view of living with a child who has a deadly cancer. We do indeed live differently.

Over the 4 years, I have met sooo many amazing cancer families like ours. My carepage/caringbridge families have such an important role in my life. I am connected to people I have never even met. I love people I have never even met. I feel sad and happy for people I have never even met. All of this is because Mike and I were chosen to be Roman’s cancer parents. For that, I am blessed and wouldn’t change a thing.

Over the 4 years, we have lost sooo many beautiful kids who have gone to heaven way to soon. Neuroblastoma has taken so many lives, I literally have lost count. 2 out of 3 kids with Neuroblastoma don’t survive. I follow roughly say like maybe 50 kiddos with NB. Of the 50, there are 10 who have never relapsed, 11 including Roman. That means I follow 41 kids who have relapsed. I know there are many more kids I don’t follow and don’t know about, but, I just wanted to show you my world of numbers and what I live with on a daily basis. As you can clearly see, Roman is in a very small number of kids. That being said, after being surrounded by death for 4 yrs., yes that number 11 scares me the most. It scares me because I know Roman’s in a number base that is far and few between according to the kids I follow. So, when I say that Roman is a walking miracle, I absolutely mean it and have the data to prove it.

Knowing that things can change with Roman in an instant has made us live differently every single day. In a huge way, we are blessed because we do live differently by not taking our marriage, our kids, our families and our friends for granted. A gift is a gift and we are truly blessed and have been truly blessed with many gifts over the past 4 years. Precious time is the biggest gift of them all.

The future is always a question mark isn’t it.......I mean, it really is for all of us… but more so for Roman. I have no idea or clue when the day will come when Mike and I have to sit Roman down and tell him what he has in detail. I am not looking forward to telling my son that he has a deadly cancer and that so far it has left him alone. I am not looking forward to telling Sheridan either. Of course they both know he was sick, and they even know the word cancer and NB, but, they have no clue to what extent and how detailed and how scary. Until that day arrives, we live each day with prayers for our son that he remains NED.

On Roman’s 4 year anniversary day, I would hope that everyone who has followed us over the past 4 yrs., has learned something from my rants and my Roman Updates. I still have people telling me to write a book. Maybe, someday that will come true with a publisher and all but …however…each Roman Update is my personal journey book as a cancer mom to both Roman and Sheridan filled with my personal raw emotions and hope, faith and super strength. A book filled with life lessons and a book I pray that will have many many chapters well into the far future. A book that has always been a making in progress since Roman was diagnosed with NB.

I want to take this time to THANK each and every single one of you who have stood by us with all of the ups, downs, happy times and sad times and scary times. It means more than the world to us that Roman and our family is so blessed by all of your prayers and support over the past 4 yrs. We can honestly look back at this nightmare that began on April 25, 2007 and know that we could not have made it this far without any of you. God Bless all of you for sticking by us. I pray Roman and our family will always have your support and prayers for the future. Roman needs them. Sheridan needs them. Mike and I need them. We will ALWAYS need prayers. Thank you for loving us and our son! God Bless!

God, we thank you for the precious gift of time. God, we thank you for keeping Roman safe. God, we ask that you please keep blessing Roman as you have.

Jody, Mike, Sheridan and Roman Fariello   

April 11, 2011
Hello to our family, friends and new friends!

Roman and Sheridan are on spring break this week! HOORAY!!! We are more than ready for some much needed time off from our normal routine.

To make a donation or register for the Butterfly Walk…go to….

http://www.active.com/donate/2011butterflywalk/JFariel1

I want to share someone with you that I have found to be so inspirational and so amazing that I could not keep this person in the background.  This person means the world to me and we have never even met…please allow me to “toot her horn”…..

There is a beautiful lady by the name of Elaine Nichols who lives in PA. She has been touched by Child Cancer with her own sweet grandson named Aiden. He was diagnosed in July ’08 with Medullablastoma. He went thru treatment and as of now, with many prayers and many angels surrounding him, he has been cancer free for over 450 days. When Aiden was in treatment, his grandma (aka…MOM MOM NICHOLS), sent me a request for Gold Ribbons when we were making them for our gold ribbon mission. She had ordered MANY ribbons from us and gave them out to everyone at CHOP where sweet Aiden was being treated. All at the same time, we started an email relationship and started praying for each other’s boys and reading each other’s updates. Cheering each other’s joys and being the rock of words when there was sadness for each other. 

Elaine (Aiden’s Mom Mom), who I refer to as my GF (girlfriend), has sent Roman and Sheridan both numerous toys in the mail and goodies. She has such a HUGE heart. I didn’t realize how HUGE her heart REALLY was until over this weekend…..

My GF sent an email out, kind of like and SOS to all of her own Aiden's Angels and supporters asking them to help Roman reach his goal of $500.00 for the BUTTERFLY WALK on May 7th.

Well, over the weekend, one by one all of these AMAZING people, perfect strangers, all the way from PA, started to send in donations. $50.00 here, $100.00 there…and so on…..My heart, and I know Mike’s heart could not be more filled with such amazing support coming all the way from PA!!!! And…all because of my GF Elaine!!!!

Because of my GF, Roman is very close and/or already reached his goal! Times are rough on folks financially. I get that and I understand. But to see donations coming in from the great state of PA from perfect strangers, makes me want to share that goodness with all of you and shout it out! I want you to know what kind, unselfish AMAZING people we have in the world still today! I want you to know that Roman is now blessed with even more ANGELS to pray for him than he had before…all because of my sweet GF in PA!

Elaine, words do not even come close as to how much I love you, adore you and appreciate you!!! THANK YOU TONS from us for supporting our son and going the EXTRA MILES for him!!! People like you are far and few and I am blessed to have you as my GF! I want to ‘toot your horn’ because YOU MY GF, deserve all the kudos for raising a lot of money for The Butterfly Walk that is not even held close to you or even in your own state! As I told your son in an email, he is blessed to have you as his mom, Aiden is blessed to have you as is Mom-Mom and Roman is blessed to have you front and center on his front line of his army! I am blessed to call you my GF and I am sending you a HUGE HUG right now! We will meet some day! I just know it and feel it! We will! I love ya GF! You’re the VERY best!!!!

God, please continue to keep Aiden safe and cancer free. God, I thank you for showering us with such love from perfect strangers. God, I thank you for sending my GF Elaine to me!  God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

April 6, 2011
Hello to our family, friends and new friends!

Roman went to the dentist the other day for a check-up. He has seen the dentist for almost the past 2 years every 4 months or so. This time, he doesn’t have to be back until October for his 6 month check up! I was so excited for him! However, SheridanBug is not so lucky. She has to go as soon as school is out, early June to have 2 bottom baby teeth pulled. Dr. Greenhill wants to help them along and get them out. SheridanBug’s mouth is too small for the new teeth that have to come in. Sooooo, she will be sedated and she will be numb for this. She is soooooo unhappy about this. I assured her that she will be just fine. I will keep everyone posted as it happens in early June.

There have been way too many kids that have relapsed in the Neuroblastoma world recently. I cannot even list all of them for there are too many. It angers me and scares me all at the same time. I feel badly for our friends and their families who have to keep their fists up constantly without a breather.

At the same time though, I savor EVERY moment with Roman daily. I enjoy watching him play at the playground with his classmates at recess. I enjoy watching him wrestle around with Mike and Sheridan like he does. I enjoy the fact that he has discovered Google and Bing on the computer. I embrace the fact that he is so smart and so good building things with his little hands. And writes so perfect! I love watching him eat! I love the fact that he giggles out loud over silly things. I love that he is fascinated with tornadoes and how they work!  Each of these moments, tiny as they are, fill my heart with joy. Each of these tiny moments are milestones for Roman. I celebrate each and every single one!

I pray for all of our NB families who have relapsed, that they get to enjoy these “tiny moments” once again. But, it takes more than prayers….

Come join us on the RESCUE ROMAN TEAM for the BUTTERFLY WALK on Saturday May 7th. Research cannot be done without your help. Roman’s future depends on it as well as so many kids who are battling the Neuroblastoma Beast. If you can’t walk with us, but you still want to help, you can donate to the RESCUE ROMAN TEAM.  If you plan on walking with us, you need to get registered as soon as possible. You only have like maybe 3 weeks or less.  Click on the link to get registered or to make a donation at the bottom of that page…

http://www.active.com/donate/2011butterflywalk/JFariel1

We thank you for supporting our son as we walk for research to find a cure for Neuroblastoma. Too many young lives have been taken by this beast. We need to STOP it now!!!

Thanks for your continued love, support and prayers for our son and family and our NB friends. It means the world to us! God, please keep blessing our Roman as you have. And God, we thank you for the precious gift of time. Jody, Mike, Sheridan and Roman Fariello

March 25, 2011
Hello to our family, friends and new friends!

Just a reminder for those of you who want to walk with Roman and support him for the BUTTERFLY WALK on MAY 7th, you can click on this link to get registered and walk with TEAM RESCUE ROMAN or donate if you are unable to walk with Roman and our family.

http://www.active.com/donate/2011butterflywalk/JFariel1

Also, PLEASE continue to pray for Trey Love cp:TheChemoKid and Davis Weisner cp:DavisWeisner, both are battling til the very end of their lives. Both of their families are going through such horrific and scary, unthinkable times right now fighting the Neuroblastoma beast.

Also, please keep praying for OUR SHINING STAR, Nicholas DeFelice cp:NICHOLASDEFELICE who is continuing to do chemo and fighting to keep the beast at bay after relapsing more than once.

All of these families are just like ours, neuroblastoma families.

It just goes to show you how blessed each moment of every day is to have Roman with us. Please pray for our friends. They need abundant prayers and miracles for their sons.

God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello        

March 20, 2011
Hello to our family, friends and new friends!

First, I want to say Thanks Kit (Kathleen) for being there for me so I could cry in your ear tonight. It means the world to know I have you in my life to cry on when I need to cry. Thanks God for laundry rooms used as a crying closet!

Since hearing about sweet Trey Love cp:TheChemoKid , I have not stopped thinking about him, his mom Missy and his Dad Mike. My heart is so very heavy.

I have not been “emotional” like this in a very long time. It’s so hard not to take on what’s happened to them with Trey, and turn it into Roman and us. I feel the need to vent my feelings, let them all out, talk to God and just speak from the heart…a cancer mom’s heart.

God, it’s me again. Yes, I know you know who I am. It seems I am always asking you for something. This time is no different. I have learned while being on this cancer journey with Roman, that the ups are as high as they can get. And the lows, well, they are lower than anyone can possibly imagine. It’s so hard being on this cancer journey. In my life I have never witnessed anything more unbearable God. What my son has been through, there are no words. What we have seen with our own eyes as cancer parents has brought us such good and such bad at the same time. The many families that are on this cancer journey beside us, fighting for their own child’s life are so special to us. And, most of them we have never even met! So God, when one of them hurts, we hurt. When one of them cries, we cry. When one of them is angry, we are angry. When one of them hits their lowest of lows, we hit our own lowest of lows for them and with them.

I am so scared God. Do you hear me! I said I am scared! I feel at times I am doing what is asked of me and I have the strength to move mountains! Other times like today, hearing about Trey relapsing, I feel so terribly weak. I feel drained. I feel like I am deflated and defeated. I feel like Roman is on a spinning wheel that no child should be on and he can’t get off. Mike and I can’t help him get off of it either. All we can do is watch him spin! Do you have any idea how difficult it is God to keep on pushing through everything, to keep on keeping on!  God, do you have any idea how difficult it is to balance all of this! This meaning FEAR and NORMALCY! 

God, I know that Mike and I were chosen for this role to be cancer parents; Roman’s cancer parents. I know you chose us for a reason. We are strong, stronger than most. But that doesn’t mean the journey is without weakness.

How am I supposed to be right now, how am I supposed to appear “Normal” on the outside when FEAR is overtaking me on the inside! Please God tell me how I am supposed to balance all of this. The further out from diagnosis it seems the harder it gets for me. Why is that God! 

God, I feel as though all kinds of kiddos are getting horrible news right now. Some of them are even coming home to see you in heaven. My heart aches for their families God. And I can’t help but to put ourselves in their situation. We’re cancer parents, it’s what we do. I am so scared God with this news. Maybe it’s because Roman and Trey’s paths are very much alike in many ways. Maybe it’s because Trey was NED like Roman. Maybe it’s a combination of all of those things. I am scared and so worried for Trey’s parents. I can’t help but to put Mike and I in their shoes. I know many of you are thinking “Wow Jody, get a grip…Roman is doing amazing and he is fine”….my answer to that is this… if you think that way about Roman, then you don’t know a thing about Neuroblastoma and you have no clue how it kills our kids. There is no room for any kind of naivety when it comes to NB.  At times God I wish I was naïve and wanted nothing but good things to happen and good thoughts all the time. But that’s not my reality at all. I am always on guard 24/7. I never get a break from being on guard from NB. I will NEVER let my guard down. I can’t God, I am a cancer mom. It’s what I do. It’s how I survive daily being on this journey.

I wish there was a way to explain this FEAR I have God, but I simply can’t. It’s good that people on the outside have no idea about this fear. If they did, it would mean that their child has Stage 4 NB like Roman and they would be feeling like I am right now. I would not wish this FEAR on NO ONE!

At the end of the day God, all I ask is that you allow me the gift of precious time. I am just another cancer mom here asking you for strength, guidance, faith and hope. Please pass strength onto Missy and Mike Love God. They need it now. Please also pass strength onto the parents of the few kiddos who are NED like Roman. I am beside myself with fear God that all the kiddos around Roman are going to heaven to see you! And I know that I am not alone in that feeling right now. Please God I beg you to give me the strength to keep my sanity, my faith and my hope. It’s not easy being a cancer parent God. It’s all about balancing. So far, for almost 4 yrs. now, I have balanced very well I think. We live with one foot in the cancer world and one foot in the “normalcy” world. And tonight God, both of these worlds are completely not balancing.

I do not know exactly how Missy and Mike are feeling but I have a pretty good idea God. I gotta tell you God that feeling of losing Roman is totally unbearable. It hurts to breathe thinking about it. I don’t want to think about it, but how can I not think about it when so many kiddos are coming home to see you God in heaven who have cancer like Roman! This is where I am at my weakest God. This is where my faith is shattered and my hope has left me. Please give me the strength God to replenish myself so I can dust myself off and get right back up again tomorrow for Roman and Sheridan.

That’s all I have for now God. I know you can hear me. You have heard me before. Please God, help me keep the fear at bay. Help Missy and Mike with abundant strength in the upcoming days with Trey. And finally God, please keep blessing our Roman as you have. Thank You God for listening to this cancer mom. Jody Fariello

March 20, 2011
Hello to our family, friends and new friends!

I am sending out this update to ask all of you to please pray for Trey Love cp:TheChemoKid

He has just had a bleeding, metastatic tumor removed from his head and is in the PICU recovering. The docs and pathology points to an NB tumor. Roman was blessed enough to do an awareness video with Trey Love on Neuroblastoma 2 yrs ago. Please watch the video, even if you have already seen it. you will get to see sweet Trey Love with his Mom Missy and Dad Mike, along with our family. What I say in the video about fear back then, is STILL very much how I feel today, specially with the news about sweet Trey. Please pray for strength for the family and PRAY HARD FOR TREY TO RECOVER.

http://www.youtube.com/watch?v=ghlifCf54x4&feature=player_embedded

God, please hear me. I am so physically ill right now and so worried about Roman now. it is times like these that I do my very best to keep the faith about Roman, but it's so hard to keep this balancing act up when another NED kiddo relapsing and in the very worse way possible. Please give Missy and Mike extra strength to keep on going. Also give Mike and I strength right now for we are so scared for Roman.

Thanks everyone for praying for our dear friends in PA. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

March 7, 2011
Hello to our family, friends, and new friends!

Wow! It has been a very long time since I have updated. Things are going well here and "normal" for the Fariello family. We had conferences at Roman's preschool with his teacher Ms. Terri recently. Roman is doing amazingly well and is more than ready to start kindergarten in the fall. Ms. Terri told Mike and I that Roman writes extremely well for his age. Everything from fine and gross motor skills, to talking and listening, his overall behavior in class, and making friends, Roman is as "normal" as a kid can get. With that said, Mike and I were elated to hear such great news about our son. So Roman graduates from preschool in late May. We are very much looking forward to celebrating that miracle of Roman graduating from preschool. I cannot believe that we are coming up on Roman's four year anniversary from diagnosis next month. Time is such a precious gift! I will register Roman for kindergarten tomorrow night. I cannot believe my miracle baby boy is going to be entering kindergarten in the fall!

Sheridan is getting ready to start spring soccer this week. She has been very busy with her Girl Scout Brownie troop earning badges and having a blast. She also has lost both of her top front teeth in the last couple of days. SheridanBug looks absolutely adorable without having her top teeth. The tooth fairy has been very busy at our house!

I want to remind everyone about the Butterfly Walk that is set for Saturday, May 7. We have RESCUE ROMAN as our team for the walk. May 7th will be here before we know it. If you would like to walk with us or donate if you are unable to walk, go to www.butterflywalk.com or click this link http://www.active.com/donate/2011butterflywalk/JFariel1  to get registered.

Also tomorrow on March 8th, I have to take Roman for another round of immunizations. He will have the DTP shots. The last time he had this set of shots, one of his legs swelled up twice the size as the other leg. I pray that does not happen this time around. Roman complained of his legs hurting him because of the shots. I pray he does not have any pain this time around. If I am correct, Roman will only have to get one more shot, an MMR booster. I am really glad that these immunizations are coming to an end very soon.

I guess that is all I have for now. Please continue to keep our care page and caring bridge families in your prayers. Many of these kids are facing relapse, treatment, or the end of their young lives. Abundant strength is what I wish for all of the families. I will update soon again.

God, please keep blessing our Roman as you have. Thanks so much to all of you for your continued support and prayers for our son and family. Jody, Mike, Sheridan and Roman Fariello

February 11, 2011
Hello to our family, friends and new friends!

I come to all of you tonight asking for prayers for a fellow Neuroblastoma family very dear and close in our hearts. The DeFelice family, Denise, Brian and Nicholas.

Nicholas was one of our very first kiddos we started following at the very beginning of Roman’s journey back in April ’07. Nicholas at the time was NED and farther out than Roman. We looked up to him and he was one of the success NB stories everyone like me wanted to hear. I started following Nicholas on his carepage cp:NICHOLASDEFELICE and coined him the nickname OUR SHINING STAR. We called him that because he was NED and was a little guy Roman could look up to.

Well, here we are, almost 4 yrs. later, and I am ill with knowing that EVIL NB has taken over Nicholas. He has relapsed a couple of times before and has been able to come back to NED status. He had an MIBG yesterday. They got results tonight and it was not good. Nicholas has it in a lot of his bones. They lit up on the MIBG scan. His liver is in question too, as it is appearing uneven. They fear NB is in the liver. They will find out on Monday for sure. He also has it in his bone marrow. They have fought so hard. Nicholas is such a strong boy. He is so wise beyond his years. He is a beautiful little boy. He is Sheridan’s age, 7. Nicholas is an only child and is the apple of his mom and dad’s eye.

Nicholas was diagnosed in ’06. I cannot tell you how I am feeling right now. I am friends with Denise and we have spoken on the phone numerous times over the years. We have even oddly enough, talked about the “what if” scenario with our boys a long while ago. It just hits too close to home. Nicholas is in my heart. I feel extra close with him because I have been following him for so long. I am devastated. I am ill. I am angry. I am scared. I am so worried about my friend and her husband. I am scared for Nicholas.

It’s in these fearful times that Mike and I are reminded that the wrath of NB strikes whenever it wants to. NO CHILD IS EVER SAFE or FREE! I am more than scared for Roman. It’s so hard to not internalize this as a cancer parent what has happened to Nicholas. I am just so sad and mad at the same time. I keep saying in my heart “no way, not OUR SHINING STAR”. This SUCKS!!!!!

Please, I beg all of you, go to their carepage and leave them a message of support. cp:NICHOLASDEFELICE    Tell them you are a Roman supporter so Denise and Brian know who you are. Please do it for me. She is my friend and one heck of a cancer mom.

Denise and Brian, words are just not easy right now. Know that so many are praying for OUR SHINING STAR. Sending SUPER strength to you guys. We love you and would do anything in the world for you and OUR SHINING STAR. OUR SHINING STAR IS THE BRIGHTEST!

Thanks everyone! God, please surround Denise, Brian and their families with abundant strength. Guide them. Hold them. Help them. God, please keep blessing our Roman as you have. Jody, mike, Sheridan and Roman Fariello

February 4, 2011
Hello to our family, friends and new friends!

We sure are ready for spring here! We have had all kinds of sickness this wnter since right before X-mas to the present. Mike, Sheridan and Roman all have had the cough, nose and fever thingy this week! UGH! I am praying I will be spared.

I am sending out an email because I just got notification about the annual BUTTERFLY WALK that we are a part of. This year, it is on <<<<<<<<< SATTURDAY MAY 7th >>>>>>>>>

I wanted to share this date with everyone so you can mark it on your agendo and to do list:) Last year, we were so blessed to have over 36 Rescue Roman supporters walk with us! AMAZING! And, our very own RESCUE ROMAN TEAM raised $2500.00!!!!!!!! WOW! That's something to be VERY proud of! I hope we will surpass that this year. I also hope we have many walkers walk with us again.

That's all I have for now. I will be updating soon again when I have the RESCUE ROMAN TEAM page up and running. Thanks to all of you for supporting us! 

God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

January 10, 2011
Hello to our family, friends and new friends!

Roman did just fine with getting his MMR (measles, mumps, rubella) and Varicella (chickenpox) shots today. He was a big boy and just took both shots in each arm as expected of him. He teared up when each shot went in but as soon as it was pulled out, he was fine. These were the live viruses that he needed to go to kindergarten in the fall of this year. Side effects from these are high fever and rashes on or after the 10th day after the shots were given. UGH! Roman is still not done with immunizations, UGH! Almost done though. I can finally see the light at the end of this scary but "normal" tunnel.

That's all I have to report. Please keep all of our carepage and caringbridge families in your prayers. I take these immunizations EXTREMELY serious for obvious reasons for Roman's health and safety but also for the not so obvious...like the many kiddos that don't even survive treatment or live long enough to see a day like Roman saw today. For that, Mike and I are so so blessed that Roman has come this far. We thank all of you for your continued love, support and prayers for our son and family. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello 

January 2, 2011
Hello to our family, friends and new friends!

Please enjoy these professional pics of our family taken in November by our amazing photographer Mikki Schaffner. Mikki, I have said it so many times before…you are a blessing and a walking angel to our family. We thank you for capturing our family moments that will last forever for us. We love you Mikki!

http://picasaweb.google.com/jody.fariello/XmasPics2010?feat=directlink

HAPPY NEW YEAR FROM US TO ALL OF YOU!!! I cannot believe that it is already 2011. Time goes by so very fast. We had a wonderful Christmas with our families and friends. Santa went overboard as usual! We are very blessed to have Christmas like we do. So many others are not so fortunate.

We are looking forward to this year for many reasons…one of them being Roman will be completely finished and caught up with all of his immunizations after this next round of shots in 2 weeks. I am nervous about him getting the live shots, MMR and Varicella, but I know he needs them and then we can quickly cross that off our list for him to go to kindergarten in the fall of this year. Roman will also celebrate his 4yrs of being diagnosed with Stage 4 Neuroblastoma on April 25th. A day I am looking forward to for him. It just means that he is that much farther out from diagnosis day and moving full speed ahead, getting ever so closer to that 5 yr anniversary mark, so he then can be sent over to the survivor clinic. We are more than ready for him to be at the survivor clinic. Welcome 2011!   

Another reason we are looking forward to this year is Sheridan will be playing soccer again in the spring and she is so excited about it already. She can’t wait! I can’t either as I love watching her and the girls play.

Life is otherwise “normal” for us. We cherish the “normalcy” and welcome it. Roman goes for his final shots on January 10th. I know getting shots is a “normal” thing for kiddos. Hopefully he will have limited or no side effects with these. The last set of shots he got in his legs a few months ago, his left leg swelled up twice the size as the other leg and both legs hurt him really bad. It lasted like that for almost a week, so I hope these don’t bother him like those did. I will update to let all of you know how he did with these shots.

I try to explain to people my fear…it’s not that I don’t want him to be immunized, I certainly do…but that my nerves get the best of me because I don’t know what side effects to expect from Roman……Roman is not the same baby boy I gave birth to. His body has been thru hell and back. It’s been altered by deadly chemicals. His body has been radiated. He has taken horrific drugs that only adults should have taken. I have NO CLUE as to how his body is going to react to getting a chicken pox shot or a measles shot, mumps shot or a rubella shot. THAT’S what I am afraid of. No one knows how he will react. He’s not a baby now. These shot are usually given to babies who are healthy…not 5 yr old little boys who have had stem cell transplants, chemo, radiation and deadly drugs. Just scary for me that’s all. It’s all part of the journey we are on with our son. It’s just a fear of mine that I will get thru and work thru. We are blessed I know that he is even getting re-immunized…too many kiddos have gone to heaven and didn’t get the chance to get re-immunized. So I know even the shots are blessings for Roman. 

We thank all of you for your love, support and prayers for our son and our family. We would not be where we are today without all of you. We wish all of you a wonderful 2011 filled with health, happiness and all of the riches life has to offer…and I’m not talking about money either…money wouldn’t hurt, but that’s not what I meant by riches.

God, please keep blessing our Roman as you have since April 25th, 2007…the day our lives were changed forever. The day our eyes were opened wide and our hearts were opened even wider. We thank you God for the precious gift of time. 

Love to all of you! Jody, Mike, Sheridan and Roman Fariello

December 23, 2010
Hello to our family, friends and new friends!

I cannot believe it’s the eve before X-mas eve! Time has flown right on by us. Roman and Sheridan are beside themselves with Santa coming tomorrow night. Their lists were waaaaay too long! So cute though! Roman was one of the 3 wisemen in his Christmas performance at his preschool. Enjoy these 4 pics...he looks so adorable! Proud of you Roman! 

 http://picasaweb.google.com/jody.fariello/RomanSPlayAndStNick?feat=directlink

I want to take this time to wish all of you a very MERRY CHRISTMAS!!! Enjoy your time with your families and friends. Take no moment for granted. Take each and every single detail in. Savor it to the fullest! We certainly will here! Families and friends are what truly matters in life. There are no presents under any tree that can match those! Time is so precious and special. Please enjoy and be safe while enjoying.

I also want to extend a Christmas thought from my heart to all of our carepage and caringbridge families who have lost their beautiful children. This time of year is so very hard. Not only on the parents, but the grandparents and siblings of children who are already in heaven way too soon. Know that not only our family, but many others as well, will be praying for strength and love to surround you this time of year, into the new year and always. And for Abby Streszoff who joined heaven waay too soon on Dec 1, we will be lighting a red candle just for you so your light will shine in our house on Christmas Eve.

Merry Christmas! “BLESS US EVERYONE”

God, we thank you for the precious gift of time! God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

November 23, 2010
Hello to our family, friends and new friends!

THANKSGIVING came to us 2 days early...ROMAN REMAINS NED!!! HIS CT WAS CLEAR!!! Thanks to God and to ^^Sweet Corey^^, Roman gets another 6 month lease on life!!! We still don't have lab results, but I also wanted to let everyone know that they took 2 extra viles of blood for RESEARCH!!! That makes Mike and I very happy that they are using Roman's blood to do research on in the lab for NB. Roman does have what they have termed "a benign 3mm bone island" on T9 of his spine. It did not get any bigger or any smaller from last Ct scan in May...it stayed the exact same size. Something we will continue to keep an eye on every 6 months. Roman will go back at the end of  nextMay for another 6 month CT scan and check up. Dr. Wagner said "Roman looks absolutely great" and he was quite pleased with him and how well he is doing. We love Dr. Wagner!!! He is our family:)

I have to thank ALL of our supporters for lifting me up when I need lifting. When I get on here and let out my raw emotional feelings of fear, anxiety and now joy and happiness...all of you are right there along with us. All of your phone calls, emails, text messages and FaceBook messages are just what we need to get us thru SCANXIETY. Words do not express how we feel knowing we are so loved and cared about. Knowing our son Roman has the biggest ever army of supporters and prayer warriors around 24/7 non stop. We love all of you!

This Thanksgiving is very special for us now kowing Roman remains NED. However I cannot go further without mentioning our fellow carepage and caring bridge families who are not getting to celebrate Thanksgiving with their beautiful children, either because they are in treatment or they are already in heaven waaaaaay too early. Please say a special prayer this Thursday for our friends who do not have their own "ROMAN" sitting at their dinner table as a family celebrating. To all of you my fellow cancer parents, my heart is with each of you this Thanksgiving. God Bless all of you and thanks for loving us and supporting us and our son Roman. Happy Thanksgiving!

God, please keep blessing our Roman as you have. God, we thank you for the precious gift of time with our son and family. Jody, Mike, Sheridan and Roman Fariello     

November 22, 2010
Hello to our family, friends and new friends!

Tonight, as I type this, on what I term as SCAN EVE, I am sick with worry and the most horrific scanxiety ever. I am not sure if it’s just because Roman has had a few complaints, or if it’s because this will be the first time ever in 3 yrs that Roman will not be having an MIBG Scan. Either way, I am just a mess! Roman is in the bathtub right now and Sheridan is playing in the water with him and both are without a care in the world. I am hearing laughter fill the house up stairs. It makes me feel so grateful that Mike and I are filled with worry and stress and they both are not. Laughter is how it should be for them both.

I just wanted to also say a HUGE THANK YOU to our closest friends and family. The Scan stress is not only on Mike and I but, all of our supporters too; especially our closest ones. To both of my sisters, I love you dearly, thanks for supporting us. It SUCKS! Scan time SUCKS plain and simple! To my closest gal pals: Anne Allen, Kim Kruspe, Marsha Benjamin, Kathleen Bertline, Deb Powell, Jennifer Hendren, and Christina Whittle… I don’t know what on earth I would do without you gals. Thanks for being there for not only me but for Mike and our family as well. Your support means the world to us. We know you all are feeling what we are feeling and going thru it because of us. We love ya’s more than words. Thanks for checking on us always. 

There are no words to describe SCAN EVE. I wish I could describe it to you but I just can’t. The closest way to even come close to describe it is like you are hanging on the edge of a cliff…hours and hours go by, your still hanging on the edge of a cliff and your knuckles are completely white. The waiting for results which means a phone call from the doc could go either way …. you could have a hand grab yours before you fall to help you back up….or…. you could fall completely down a deep black hole with no way back up. That is how Mike and I are feeling right now on this very SCAN EVE.

Please pray tonight and tomorrow for Roman that he remains NED forever and ever. Please pray tonight for Sheridan that she understands why she has to get up so early to be at Marsha’s in the morning. Please pray for Mike and I that we at least TRY to sleep some tonight and that we have the strength to manage our stress somehow for tonight and our day tomorrow as we wait for results.

God, please keep blessing our Roman as you have. Thanks to all of you for your prayers and I will update tomorrow as soon as I hear something. Jody, Mike, Sheridan and Roman Fariello

November 10, 2010
Hello to our family, friends and new friends!
 
To see our Halloween pics, click on link...
 

It’s been a while since I have updated last. We had a very fun Halloween! Mike dressed up as Willy Wonka from Charlie and Chocolate Factory. I dressed up as a Groovy Chick. Sheridan was Princess Lea from Star Wars and Roman was Darth Vader. Halloween is always fun for us and the kids. We always dress up with them and they enjoy seeing us dress up. We had a real good time with our neighborhood friends. Thanks to Dave and Marsha Benjamin for feeding us dinner that night! We are blessed with real great neighbors.

All has not been great in the Neuroblastoma world. We have lost way too many kids recently with NB. Each time I get a carepage or caringbridge update about another child losing their young life to NB, I get this sick feeling in my gut. For the past 3 years since Roman was diagnosed, I have had that same sick feeling in my gut. I feel like NB just kicks me over and over again with the death of each child. I feel like it is sending me a very ugly unwanted reminder that says “hey Jody, I am still on Roman’s tail”.

Now I know I manage day to day very well. And have come a long way personally since 3 years ago. But, I cannot lie and say that I am doing great with no worries here. I will NEVER be able to say those words ever. I feel like I am going along life’s highway, with Mike and our two kids watching them grow up and enjoying every moment.  While all at the same time I feel like at any given moment I am waiting for our nasty number to be up for our son’s life. It is not something I dwell on but it is there in my head alot. It seems the farther out of diagnosis and being off treatment, the more I struggle with thoughts like that in my head.

When Mike and I went to the NB conference this year, there was a guest speaker who was a therapist. Her session was on Post Traumatic Stress Disorder and Childhood Cancer. As she was speaking and telling us the signs of this disorder, I found myself shaking my head in agreement with what she was saying. There hopefully will be in the future more studies done on parents with a child having cancer and also on siblings and on the child themselves. I truly feel Mike and I are dealing with some of the “signs” she gave in her session. I don’t need a therapist to tell me that a cancer parent has PTSD. I know we DO indeed have it and it is something we live with daily. There is no way around it.

She actually even said that it is somewhat compared to a soldier coming back from war. Only ours is a different kind of war. We are fighting for our son’s life battling a deadly disease. We do relive events that took place, specially diagnosis day and the transplant process itself. That’s just a couple of events that I relive a lot. I have had many dreams about Roman in transplant and just all kinds of yucky nightmares if you want to call them that. Smells that I recall of hospital life, even how Roman smelled while in transplant; a certain visual will set me off too, like a certain pic. So, I can definitely say that I experience many “signs” of PTSD. Specially now the farther out we get. I am more than glad that Roman is young and don’t have to experience it himself right now. I am sure there will come a day when he DOES experience many feelings as he gets older growing up with his cancer. And of course there is Sheridan that I worry about as well. 

There is not a day that goes by where I don’t think about Roman’s cancer or relive some memory of the past 3 years. I feel like Mike and I are ALWAYS ready for war at any time. I feel like we are fully armed 24/7 with weapons in hand ready to assault NB. With his CT scan coming up, I feel completely white knuckled holding onto my weapon. With every complaint Roman has like “mom, my legs are tired” or “mom, my back hurts” I feel like I wanna just lay down and cry. But I don’t. I can’t. My stomach gets so ill when he says things like that. I feel so helpless when he says things like that. Who knows what exactly is going on inside his little body! It scares me. It frightens me. It chills me to the bone hearing those words come from his mouth. Until labwork comes back NORMAL and we get the CT IS CLEAR from Dr. Wagner, we will be on guard 24/7. Sleeplessness, edginess, thinking positive thoughts, thinking horrific thoughts, stress off the charts, blood pressure off the charts and many trips to the bathroom…is how I survive the weeks and the night before Roman’s scan time.  I have had many people try to send me info on how to manage stress better around this time. BUT, there is NOTHING that works except hearing Roman is good for another 6 moths. Nothing else!

Please please start praying now for Roman to remain NED forever. Please pray that his complaints are nothing. Please pray for our fellow NB families who recently lost their children and are now up in heaven. Heaven is waaaay too crowded with children because of childhood cancer. Please pray for strength for them as they try to manage each day without their kids. Please pray for strength for Mike and I that we make it thru the next couple of weeks thru scan day so we really will have a TON to be thankful for on Thanksgiving Day.

God, please keep blessing our Roman as you have. Thanks to all of you for your continued prayers, love and support for Roman and our family. Jody, Mike, Sheridan and Roman Fariello  

October 18, 2010
Hello to our family, friends and new friends!

BUSY, BUSY, and BUSY is what we have been. 

 To see our pics we took of Roman's Birthday click below...

http://picasaweb.google.com/jody.fariello/RomanS5thMiracleBirthday?feat=directlink

Roman celebrated his 5th miracle birthday on the 7th and we had a party last Saturday (9th) for him here at the house with family and friends. He wanted a POWER RANGER BIRTHDAY, so that’s what he got!  Servatii Bakery made Roman’s Power Ranger cake and they did an amazing job! I just wanted to share that Servatii Bakery is PEANUT FREE and to inform everyone of that because they don’t advertise the fact that they are peanut free now.

Mikki Schaffner, our amazing photographer, came to capture the party day for us. Mikki, we love you and cannot thank you enough for being here for us as we celebrate another miracle birthday for Roman. To see Mikki's amazing professional pics of Roman's Birthday click below....

http://mikkischaffner.smugmug.com/Events/Birthday-parties/Roman-turns-5/14123988_VG7sR#1041294451_kaNsd

On Friday the 15th, I took Roman to see his allergist, Derney came along too. I wanted an explanation about his blood test result from a couple months ago and to see where we stand now. Unfortunately, the news we got was NOT what we hoped to hear.

They did a peanut test, tree nut test, soy and coconut test on his back. Poor Roman was physically wrestling around with me because he knew what was coming on his back and he obviously didn’t want it! Not fun for me. I didn’t like bullying my son around for them to give him any kind of pain. If anyone has been tested before for any kind of allergy, you know what I am talking about. After he finally caved and after I was sweating to death from wrestling with him, we had to wait about 20 minutes to see if and where he was going to react…that being said….the ONLY thing he reacted to was the PEANUT and NOTHING ELSE!!! He had a welt on his back about the size of a half dollar. Derney and I felt horrible for him because it was very itchy and he was upset and mad at me for making him take his shirt off so they could inject him with pain. After all was said and done, he left with a smile on his face after some oral meds and anti itch cream on his back. UGH!!!!

I personally wrestled with the fact in my mind that this was no big deal for Roman and that he’d been thru much worse! I know he’s been thru much worse, but he DOES NOT KNOW THAT yet and I had to remind myself over and over again that just because I thought this was no big deal for Roman, it in fact WAS a big deal to him! UGH!!!

The doc told me his insight on why he thinks Roman’s blood level went from almost not relevant to down right severely high. He said maybe Roman somewhere along the way before his blood withdraw, either ingested or touched something or somewhere with peanut residue and then touched his mouth, or rubbed his eye etc. Basically entering the body, not necessarily even by mouth, but anyway it can get in and create antibodies in the blood. Not warranting any kind of peanut reaction either, thank God, when he apparently did this. I am no doc but anything is possible I guess. So, unfortunately the end result here is this…looks like Roman will have to live with his peanut allergy for a long long time unless great strides are made for peanut allergic kids. The doc went over things with me on how Roman’s preschool handles peanut allergic kids, procedures that are in place etc. Roman will go back in 2 years for another visit. Did I mention that I hate Neuroblastoma and Peanut allergies together! UGH!!!! 

On Sunday 17th, Roman celebrated his 3rd year anniversary from his stem cell transplant. I cannot believe that it has been 3 years ago that our son was getting a 2nd chance to live. Putting him thru the transplant process was more than scary. We look back on that dark time and think how we even survived that entire month of being apart from one another with Sheridan, enduring hospital life, etc. And how did our amazing son at the age of 2 endure such a horrific experience!  We watched his physical transformation in one month’s time as we began it with tears and ended it with smiles! Here we are 3 years later, so far so good! Thank You God! Thank you sweet ^^Corey^^!    

Ok, last but certainly not least, we have a scan date for Roman. Polly our nurse coordinator called last week and told us Roman will have a CT SCAN of his head, chest, abdomen, pelvis and bloodwork and visit with Dr. Wagner on November 23. Please start praying now for Roman to remain NED!

That’s all I have for now. Please keep praying for all our fellow care page and caring bridge families. Many of them need miracles. God, please keep blessing our Roman as you have. God, we thank you for the gift of precious time with our son. Love and thanks to all of you for your continued prayers and support of our son and family. Jody, Mike, Sheridan and Roman Fariello

October 7, 2010
Hello to our family, friends and new friends!

HAPPY 5TH BIRTHDAY ROMAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I cannot believe that our son is 5 today! What a blessing! What a miracle! Turning 5 is a TRUE celebration and blessing from above because we have had far too many of our NB friends go to heaven already. Many of them didn’t make it to celebrate their 5th Birthday. In the Childhood Cancer World, EVERY birthday is a huge milestone and blessing. There is not a single moment that goes by where Mike and I don’t look at Roman in awe. We know that his cancer is still as deadly as the day he got diagnosed. We know that he has endured what most adults couldn’t handle. We know that so far, God has a plan for Roman and he has amazed all of us with how well he is doing with everything he has been through.

It is fitting that Roman’s Birthday is in October and that 3 years ago in October, Roman got his second chance at life with his transplant (October 17th, 2007).  I always associate Roman’s transplant with how long he has been NED (No evidence of disease). Roman is 3 years NED, a true blessing and milestone in itself. Many kids don’t even make it out of the transplant process much less make it to their 5th birthday.

Roman is doing amazing in preschool. He loves school. He only goes 3 days a week, and on the days he doesn’t go to school, he REALLY wants to go! They did some testing on the kids in preschool a couple of weeks ago to see where the kids are and to see if there are any “areas of concern” or areas that need more attention.  As any parent out there, you want to know those things about your kid …as a Cancer Parent, I REALLY wanted to see where Roman was and how he did with all of the testing stations to see what problems we needed to address…... well, I am THRILLED to report there were NO problems that needed any attention because Roman scored a 99% overall, including fine and gross motor skills, speech, etc. EVERYTHING WAS NORMAL!!!! THANK YOU GOD!!!! The testing was called the Dial-3 here in Boone County. So, he is a true miracle walking!

We are coming up on our 6 month scanxiety time again. Roman goes next month sometime in November. I don’t have the exact date yet. When I get the date, I will let everyone know. Roman will only have a CT Scan of his head, chest, abdomen and pelvis and lab work, along with a checkup with Dr. Wagner in the clinic. All of this should be done on the same day, but I will let all of you know when it is.

We are looking forward to a birthday celebration here on Saturday afternoon with family and friends for Roman. I will indeed take plenty of pics to share. But our amazing memory catcher, Mikki, is coming to take professional pics of Roman on Saturday for his party. Mikki takes the most beautiful pictures of our son and family. We love you Mikki! Sheridan has her final soccer game on Saturday and then she will be in tournaments the following weekend. So, life is good here at the Fariello household. I will update soon hopefully with a scan date to share.

Please keep our carepage families and caringbridge families in your prayers. Many of them are in front line treatment, dealing with relapses or losing their beautiful children as I type this. Pray for strength for them. 

God, we certainly thank you for allowing us the gift of precious time with Roman. Our family would not be complete without him. God, we thank you for blessing our Roman as you have. Love and thanks always to all of you! Jody, Mike, Sheridan and Roman Fariello

September 7, 2010
Hello to our family, friends and new friends!

WOW, what a beautiful day for the Fariello family! A miracle started preschool today! Roman went to school and was so excited to be there! He's more than ready to go back tomorrow! I did'nt cry right away...when he walked inside of his classroom, I then signed him in, and made the mistake of peeking around the door to see him...Roman was standing in line to wash his hands at the beginning of class. That set me off and I balled...along with Roman's teacher Miss Terri:)

The feeling of seeing him be NORMAL and doing what he is supposed to be doing, made me ball hard.

After that, I only cried with my mother in law (Derney), father in law (Duppy) and my friend Anne on the phone. Roman did awesome! Thanks for all of the supportive phone calls, emails and carepage messages....my heart needed that support today:) I love my family, friends and carepage/caringbridge friends! You all are the best ever! Please enjoy these pics of Roman's first day at Preschool! (click link below)

 http://picasaweb.google.com/jody.fariello/RomanSFirstDayOfPreschool?feat=directlink

 God, please keep blessing our Roman as you have! Love to all of you! Jody, Mike, Sheridan and Roman Fariello

September 6, 2010
Hello to our family, friends and new friends!

The EXCITING time has come for Roman to start preschool tomorrow. He will be in 3 days a week on Tuesdays, Wednesdays and Thursdays from 9:00am to noon. He is sooooo very excited about going! He will be going to the same pre-school that Sheridan went to when he was diagnosed called Crossroads Preschool. He will have the same teachers as Sheridan did, Miss Terri and Miss Kari. It makes life much easier for me as they already know Roman’s history with his Neuroblastoma and his peanut allergy.

Miss Suzanne, the director, has made us feel 100% at ease about Roman. So I know Roman will be in the VERY best of hands possible with all the staff at Crossroads. I cannot say enough about how loving they are with the kids. Roman will be taking his own snack for the 3 days he will be there because of his peanut allergy. It makes me feel good to know too that the little girl he sits next to also has a tree nut and peanut allergy, so he is not “alone”.

Mike and I believe what an amazing MIRACLE it is from above that Roman is able to even go to preschool. It is one of those “normal” milestone times for parents to see their kids go to any type of school for the very first time…now…times that by a zillion and that’s how very emotional, proud and overjoyed we are about Roman going to preschool. Considering that far too many of our fellow cancer families’ children don’t get to start school because they are in treatment or because unfortunately they are already in heaven. We have lost way too many kiddos before preschool age. Roman going to preschool is TRULY a blessing and a miracle all in one. I will savor each moment getting him ready for school in the morning and will say a prayer when I turn around and leave him in his classroom.

To all of my fellow cancer parents who’s child is currently in treatment or already in heaven way too soon, my heart and thoughts are with you tomorrow as I send Roman to preschool for the very first time.

I will be a HUGE BAG OF EMOTIONS and will be balling as soon as I drop him off in the morning. Tears of joy of course, but this will be the first time EVER he will be away from me and in the hands of someone else. He does get to bring his favorite stuffed toy with him, and everyone who knows Roman knows his favorite stuffed animal is DOG DOG. It’s a dalmation doggy that Derney got for him for when he was around 1. DOG DOG has been thru EVERYTHING with him…when I say EVERYTHING I mean it!  He has been thru surgeries, radiation treatments, CT scanners, MIBG scanners, clinic visits, dental treatments, dental surgery, blood draws etc. You name it DOG DOG has been right beside Roman thru it all. So, it’s perfectly fitting that DOG DOG get to go to preschool with Roman on his very first day.

I will post some pics later to share of Roman’s first day. My close friends may want to check on me after 9:00am after I drop him off, I will be total basket case! God, we thank you for the miracle tomorrow that will take place and that Mike and I are so blessed to have this milestone day for our son.

God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

August 26, 2010
Hello to our family, friends and new friends!

Wow it’s been a long while since I’ve updated last. The Fariello family has been very busy with work and play.

Today, Roman got more immunizations that he needed to start pre-school. He got a shot in each thigh. He got DTP, Polio and HIB. He did really well sitting there like a big boy just waiting for the nurse to jab each thigh. He did GREAT! Roman, mommy is so proud of you buddy! Roman will go back in 2 months to get a flu shot and his last HIB. He still has a ways to go to get fully caught up from having his baby shots wiped out from his transplant. He will get a blood test when we go back in November for his CT Scan to check his levels for chicken pox, measles, mumps and rubella. He is not allowed to have the LIVE immunizations just yet until we get the approval from Dr. Wagner and Polly.

Roman starts pre-school the day after Labor Day. I have REALLY thought about this day for me as his mommy and how hard it will be for me to “let him go”. This will be the very first time ever that he has left my side. On the other hand, I know he will do amazing! I know he will have a blast at pre-school. He is so smart already and I am so proud because of EVERYTHING this son of mine has had to endure. I know that day will be a MIXED bag of emotions for me. So, I am trying to psyche myself up for it now already.

We have been so busy already with school starting for Sheridan (2nd grade) and with her being in Brownies and playing soccer, our plate is very full. At last Saturday’s soccer game (their first one), Sheridan scored the first goal in the game! As soon as she scored, I ran out on the field like a CRAZED MOMMY and gave her the biggest hug and kiss! I couldn’t help myself and I was an emotional wreck. I know I am not supposed to run out there on the field, but emotions overpowered me and I just had to do it. I played soccer for 9 years so, as you can imagine seeing my baby girl score a goal pushed me over the edge! They won 3-2!!! So proud of you SheridanBug!

That is all I have for now. I will probably update on the day Roman starts pre-school, so you will hear from me then. I will be an emotional mess that day. Please continue to keep our carepage and caringbridge families in your prayers. We thank all of you for your continued love, prayers and support for our son Roman and our family. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello   

August 4, 2010
Hello to our family, friends and new friends!

I first want to say, THANK YOU to all of you who supported me in my time of “venting” with my last post. I needed to let loose and recharge and refuel. And I got such great helpful info about allergists, places to go and insight from other peanut allergy moms out there who have been where I am about to go. So I say THANK YOU so much for your support.

These “Roman Updates” that I do are really not just to share info about Roman with all of you but…They are about something way more personal and very dear to my heart…what I type is someday going to be read in great detail by both of my kids. I am writing for them. I am writing to them. They will know what their mom was feeling at any given moment without a doubt while on this journey. They will, I hope, take away great insight as to how much love and devotion Mike and I have as their parents. And that it is ok to express yourself fully. I have said this before many times…Roman’s cancer did not just happen to him. It has changed our entire family life, our views, our priorities and most of all it has given us the gift of time.  Not many families get to experience how precious and how important time is. We are blessed!!!

 

Ok…moving on to some news to share with all of you…..I knew at some point this day would come…

It is with great consideration, some sadness, some anger, abundant pride and such gratitude that I must inform all of you that Pin OnThe Gold will no longer be in existence. The website will shut down by this weekend. If you have an existing order with us, you will get it.

It has reached a plateau somewhat, kind of like a crossroads. We have some supplies left for a few more orders, but not enough money in the Pin On The Gold account to purchase more supplies and have enough for postage to get the orders out. With no donations coming in to help us pay for supplies, postage, to maintain the website, the PO Box, and not enough NEW volunteers on Ribbon Making Days, we have no choice but to end this journey. Reality is “FREE” awareness was our mission, but we know and realize nothing is free.

Please allow me to explain more in detail…

Sadness… well, that emotion is pretty obvious. I am really sad that Ribbon Making Days are coming to an end. Both Roman and Sheridan looked forward to these days. At least Mike and I have showed them what a small amount of people who care so deeply about something can accomplish. How we gave new meaning to the phrase “it takes a village”. 

Anger…well, I am angry...angry that I cannot get enough NEW people to give up one hour of their time to help us make ribbons on a Sunday afternoon. I realize people have lives, personal business to take care of and that the world does not revolve around making ribbons for childhood cancer with us…that being said… I am also angry that people who wanted to visit us in the future for Gold Ribbons for their upcoming events will NOT have them now. I am angry that donations didn’t come in as much as I thought they would to help us keep this mission of “free” awareness going across the country. But if you put all of this into perspective, I cannot be angry at this as it is… because a disease called Neuroblastoma  takes my negative energy and anger and puts it where it should be… right back on neuroblastoma! So, enough said there.

Pride…this emotion makes me feel so fulfilled! The pride I feel knowing that we, a small group of family, close friends, and even strangers sometimes, have made well over 90,000 plus GOLD RIBBONS and sent them out across the country and to places like Mexico, New Zealand, UK and Australia and many more countries. That is something that I will ALWAYS have to keep right in my heart. The pride I feel knowing how much awareness for Childhood Cancer is out there because of all us sitting here on Sunday afternoons around our kitchen table!

Gratitude…this emotion makes me cry. In a good way of course! The gratitude Mike and I have for all of the many volunteers who have helped us along the way… words just don’t quite express how we feel as cancer parents. From people who placed ribbon orders on the website, to making donations, we could not have done what we have done without your support. The amazing friends we have met and will have now forever, that support of knowing Mike and I have a HUGE cushion in place if we need to fall down. That speaks volume to us! Not many parents out there have that “extended family” like we do. There are no words to thank everyone for their time, their money, their ideas, their treats for sharing etc. Our hearts will ALWAYS cherish each and every single one of you who have ever helped make a Gold Ribbon to support our awareness campaign.

I don’t know what the future holds, none of us do! Maybe, in some strange sort of way, God is letting us know it’s ok to move on into “NORMALCY” without Pin ON The Gold, that it’s ok to live every day without constant reminders of why we are here in this in the first place…I don’t know…… But what I can tell you is, that Pin On The Gold will be ending on the HIGHEST note possible, knowing we helped bring awareness to almost 90,000 plus people across the world. Be proud! Be VERY proud!

Thanks so much everyone for supporting Mike and I on this Gold Ribbon journey, which is part of our son’s journey. We thank you! Love to you all! Jody, Mike, Sheridan and Roman Fariello

July 28, 2010
Hello to our family, friends and new friends!

I know, you are probably thinking why are you getting 2 Roman Updates in one day…well…..the previous update was letting you know peanut allergy results mostly…NOW...prepare yourself for an emotional update from a mom who has a kid with a deadly cancer AND a deadly peanut allergy. When I get like this, writing and venting makes me feel better, so here goes….

I have thought about this %*&^ result since I got the call today. I can’t stop thinking about it. I do have PMS which could explain some of my emotions right now, but not all of them. As soon as Mike got home from work today, (thank God my kids were down Marsha’s playing- thank you Marsha)...that gave me the opportunity to cry and vent freely and let it all out with my husband (thank God for strong hubbys). If the kids were here, I would have kept it all in for them.

I have not had a day like today a REALLY long time. The kind of day where I feel as though I just want my son to be NORMAL. Where I just ache for some NORMALCY for him. I just want Roman to have a NORMAL life. The kind of life we wished for him when he was born. A life where he didn’t have to worry about death and dying. The kind of life where he didn’t have to worry about having a deadly cancer AND a deadly peanut allergy at the same time.

I am a strong person. People tell me that ALL the time. Today, I am weak. Weak because I feel for my son and the horrible hand of cards he has been dealt in his very young life. The kind of weakness that only a cancer mom/peanut allergy mom can feel. The kind of weakness where I have no control over Roman’s cancer or his peanut allergy and I HATE it!!! I can’t fix it. I can’t make it all better for him. I can’t make it disappear. I can’t take it all away. Lord knows by now I WOULD IF I COULD!

I am not a person who likes to make people feel sorry for me. But today, I do want people to feel SOMETHING for my son. His cards SUCK and there is no way we can trade them in for different ones!!! The strange thing about all of this is right now, my son is in bed, sleeping, with not a care in the whole wide world…As it should be for him. That’s why I am a mess. I am the mom. I am the one feeling all of this FOR him. I am so worried about him right now.

I don’t know…maybe I am off my rocker, but I feel my son has had ENOUGH!!! That isn’t asking too much… is it!!!!! I thought just this once, with this result, we could get the best news ever and we could knock out one deadly curse plaguing my son’s body. All I wanted for him was to be free with no more peanut allergy! All I wanted for my son was to have a tiny miracle that eliminated this deadly peanut allergy from his body. I thought since I can’t make the cancer go away, maybe this peanut allergy will go away instead!

It’s such a vicious cycle that goes on inside of my head all the time. I worry about

Neuroblastoma and peanuts 24/7. When I am not worried about one, I am worried about the other. It NEVER ends. It NEVER stops for me. I sobbed out loud said “just once give our son Roman a break, he needs a BREAK”. Oh how my heart aches for Roman. I feel so %$#& helpless! The same way I feel about his cancer too! Talk about DOUBLE WHAMMY!  No kid out there deserves one or the other…much less BOTH of these deadly curses. Why ROMAN! Why my son! Why does my son have BOTH of these to live with daily! As a parent, we want to make our kids all better. We want to take away all of the bad stuff and replace it with good stuff. We want to say with confidence to our kids, “you’re gonna be ok” and MOST of you out there can say that to your own kids with confidence… well guess what….. I CAN”T and I HATE IT!!! I can’t look Roman in the eyes and tell him “everythings gonna be alright buddy”. Do you even know how that tears me up! I can’t be “that mom” who makes it all better!!!  I can’t even sugar coat things and make it seem better than it really is. How am I supposed to do this! How am I supposed to juggle all of this “horrible reality” in our family life! How am I supposed to keep my own sanity when I feel so helpless! I have hardly ever while on this cancer/peanut journey, said to myself “woe is me”! But today, I feel horrible for my son and feel scared for him, his cancer and peanut allergy. I feel that one deadly curse was more than enough for one little boy! MY LITTLE BOY!!!!!!   

I know many of you will reply to this and tell me things to make feel better, be supportive, be loving and maybe even make me smile. But at the end of the day, nothing has changed. I still have an amazing son who lives life daily facing not one, but TWO deadly curses. ..only to realize that he is living with the absolute worst hand of cards life could have dealt him with no fixes in sight for either of them. Do I feel sorry for him? You better believe I do! Will I teach him to rise above everything life has dealt him and for him to be grateful for his life? ABSOLUTELY! Will I let him know that he is BEYOND special because he was chosen to bear these curses? ABSOLUTELY, the best way I can and know how to do.

I am so frustrated right now with not having answers. I am beside myself with grief for my son and what he is going to have to endure each and everyday facing cancer related late term effects from all the treatment he had… and then fear from all the peanut related issues he will have on top of the cancer issues. I feel it’s safe to say that LIFE IS NOT FAIR for my son Roman and as his mommy I’m just feeling down in the dumps, realizing that living in the Fariello household is anything but “NORMAL” and it NEVER will be...TWICE.

Thank you for letting me let it out. This is my place to vent and let loose. These are my raw feelings out there to share. I feel entitled to let all of you parents out there know how &%$# lucky you are to have healthy kids. It is my job as a cancer mom/peanut allergy mom to let you know that whatever life has given to you with your children, there is ALWAYS some other family who has it way worse than you. Let Roman be your reminder tonight/tomorrow and the next day and so on, to kiss your healthy kids and love them and get down on your knees every single day to thank God for your healthy kids. You really have NO CLUE how lucky you really are!

Love and thanks to all of you for reading and for supporting me in my moment of weakness. It doesn’t really happen too much, I don’t let it.

Jody Fariello 

July 28, 2010
Hello to our family, friends and new friends!

Well, we got the call today from Roman's allergist's office with his PEANUT results....NOT AT ALL what we were expecting....NOT good!!!!

He had his blood tested for the peanut allergy post transplant (a year and 2 months) on Dec.31 '08. Results were very promising with a result of    .50............fast forward to this blood test result taken July 22, jumped sky high to a whopping   9.60 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   Mike and I are soooooooooo unhappy and soooooo confused right now with these results. It makes us think that Roman's blood was mixed with someone else's or the test was done wrong or something!!! UGH!!!!

We feel with a HUGE jump in lab results like this, it is best to get another sample and maybe take this sample to a different/private lab just to compare and be certain. Even get another doc's opinion on results. We are so confused how Roman's allergy could have changed that drastic! It makes NO sense at all. Anyone who knows what we are going thru with their own kids' peanut allergy... please fell free to send me your thoughts and insight to these results. We do realize Roman is not the typical kid with a peanut allergy...he is a kid who has had several rounds of chemo, stem cell transplant/rescue, radiation, accutane etc. so, I know Roman's medical history is not "NORMAL" and we realize that any of that can impact him differently. So, until we find another doc, another lab and do another blood test...well, we will remain CONFUSED...not good. 

As many of you know dealing with Neuroblastoma is itself very DEADLY...now with these results Roman's peanut allergy is off the charts way higher! Which knocks out any chance of now doing a food challenge in Cotober:(  We really were praying that this allergy was less and that we could possibly see and end in sight...Roman starts preschool in early Sept and I am REALLY going to be a nervous wreck with this allergy more than ever.

Please pray for strength for Mike and I and for us to find another doc, lab and opinion on what has transpired. We need answers for our son. To all of you parents pout there with healthy kids....do the HAPPY DANCE right now and thank God you do not have to deal with deadly Neuroblastoma or deadly Peanut Allergy. UGH!!!!!!!!!! SOOOOOOO   FRUSTRATED!!!!!!!

God, please keep blessing our Roman as you have. Please keep him safe from Neuroblastoma and Peanuts always. Love to all of you and we thank you for your prayers and support always!  Jody, Mike, Sheridan and Roman Fariello 

July 22, 2010
Hello to our family, friends and new friends!

I have wonderful news......ROMAN'S ALKALINE PHOSPHATASE LEVEL IS NORMAL AGAIN!!!!! THANK YOU GOD!!!! Polly our coordinator just called us with this great news!!!

I took Roman this morning to get his blood draw for this level to be checked. Roman's new level is 319...normal is anywhere from 100's to 450. So, as you can see we are in the best place to be... right in the middle where we should be. The relief we feel having this level back to where it should be is so awesome and we are so grateful.

We also had them draw another tube of blood for an up to date peanut allergy status. The reason for this draw now is because if it is still as low as last time...when Roman turns 5 in early October, he will have a food challenge for peanuts. And, we certainly didn't want to have to stick him then for another blood draw when we can knock both of these draws out at one time. So it all worked out for us. I will update probably next week with peanut results because this test takes more time for results.

We could not be more happier right now...my stomach and my mind can settle down now FINALLY with these great results. If I am counting correctly, Roman's next scans and labwork will be in November sometime. For now, we will be enjoying the rest of our summer, looking forward to a HUGE milestone for Roman starting pre-school in September at Crossroads, and getting his final round of immunizations then too. We thank all of you for your constant prayers and never ending support of our family riding on this rollercoaster ride filled with all kinds of  ups and downs. It is because of all of you that we know whatever news we get, we have a HUGE support team in place. That means the world to us. 

God, we thank you for giving us the precious gift of time with our son. God, please keep blessing our Roman as you have. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello

July 12, 2010
Hello to our family, friends and new friends!

Wow have we been so busy since coming back from Hilton Head almost 2 weeks ago. Busy is GOOD!!! Last Wednesday, we were able to take the kids to Kings Island for the day thanks to an amazing organization called A KID AGAIN. It was a great day, very hot out, but a fun day for all of us. Mike and I have not been there in over 10 yrs and the kids have never been there. They of course loved it! We had such a nice time there watching the kids smile and have fun. Roman and Sheridan loved riding the rollercoaster, and well just about everything they were tall enough to ride! We want to extend a HUGE THANK YOU to A Kid Again for putting a smile on Roman’s face and our daughter’s face as well. We as a family had a great day of fun.

The following day, Thursday 8th, Mike and I left for Chicago to attend the Neuroblastoma Conference held annually by the CNCF...www.nbhope.org

This was my 2nd yr attending and Mike’s very first conference. This year I was personally way more prepared in every way and was looking forward to seeing some NB family friends that I met last year, as well as meeting new NB families. Meeting and talking to many of you who follow our carepage was so nice…AND…. I cannot tell all of you the feeling I got sitting in a huge room with 250 families at one time, that no matter where they are on their journey with their kid, they feel are have felt the same exact way I feel. To know that means the world to me. I am sure Mike can relate to that as well. That in itself is worth traveling to the conference for. We were already “family” online, but to be able to hug and talk and share stories was one of my favorite parts of the weekend. But then again, I am a people person so that was right up my alley.

Last year, I was so desperate to see, hear and find a stage 4 NB survivor present at the conference, only to come home very saddened and left without hope from not seeing many there. The farther we are out from being off treatment and diagnosis I feel we are in our own category. I have had numerous people tell me that I am unique in a way that maybe other NB survivor parents are not, in wanting to share Roman’s story with the world. I do not fault these parents who are not like me. Now that I am seeing things more clear this year than last year, I understand their “disappearing” back into NORMALCY with their lives and their survivor children. I am finally able to LET GO wondering why they are not present at this conference anymore. I am finally able to realize that our ROMAN is a diamond in the ruff. He is unique. He is BLESSED to be in this “category” he is in. He is ALIVE. He is BREATHING. He is doing very well at the moment. All of which we embrace with open arms. We know that all of that can change for him and our family in less than one blink of an eye.

This year at the conference, there were 2 survivors who gave amazing insight to what happens in life after cancer into adulthood. One is a doctor now himself which is so awesome, born in 1967 with a huge tumor mass in his belly. And the other was a female stage 4 adult survivor also diagnosed as a baby with a lot of disease. The insight I took away from both of these long term survivors, was way more meaningful than any new drug trial info etc. Hearing them speak and talk about all of the medical issues they had as kids and are now having as adults meant so much to me. Why am I telling you this…well… I am telling you this because if they felt the same way as other adult survivors out there feel by “disappearing” back into normalcy, than Mike and I and 249 other families would not have witnessed what HOPE, FAITH and KNOWLEDGE looks like in the flesh. As a parent, you cannot get that kind of info from a doctor, you just can’t.

I am a person who very much feels that knowledge is power. And in our situation with Roman, going to this conference I come away feeling empowered by so many things. The knowledge from the survivors, first hand experience from the other parents and medical knowledge from the guest docs are all very uplifting and empowering. That is why I feel Roman’s story needs to be heard and shared with other NB families at this conference since the NED kids are so far and few represented there. That is why I will never stop sharing Roman’s story with anyone and everyone I can. That is why I feel so strongly about survivors coming out to share their own journey with other NB families. I want to personally thank these 2 adult survivors for coming out of their comfort zone of NORMALCY and sharing their stories with us. I can only hope and pray with great faith that Roman will be standing up there some day in his 30’s and 40’s sharing his story every year to give families the hope, knowledge and first hand insight they need for surviving STAGE 4 NB.

This conference would not be taking place for families like mine if it weren’t for the amazing strength and devotion of one cancer mom…Pat Tallungan founder of NBHope.org. Even though her son lost his battle years ago, she felt she had to do something and arranged for a meeting place for NB families. This was I think the 8th conference and each year it gets bigger and better thanks to her. Pat, you truly are one amazing cancer Mom and go getter. I am so honored to have met you! What you provide for all NB families no matter where we are on our journey, is quite a HUGE accomplishment. We thank you for providing us with a very impressive platform not only for info, but for a meeting place for families to come together to know we are not alone on this NB journey with our kids.

I also want to thank my mother in law and father in law “Derney” and “Duppy” for taking on the task of keeping our kids while we were in Chicago. It was the very first time ever we left the kids for more than just one night. I know Mom and Dad would say they wouldn’t need a “thank you” because it’s their grandkids but I feel it is important to point out that DERNEY and DUPPY are the very best grandparents ever! We love you and thank you so much for allowing us the freedom to go to the conference without worrying about the kids. You both mean the world to us!

Roman will more than likely have his blood drawn next week sometime. I have a call into Polly our coordinator to make arrangements for this blood draw to check his Alkaline Phosphatase Level. PLEASE keep praying it has lowered from the1000 that it was.

That’s all I got for now. God, please keep blessing our Roman as you have. Love to all of you and we thank you for your continued support of our son and family. Jody, Mike, Sheridan and Roman Fariello 

June 28, 2010
Hello to our family, friends and new friends!

Well, we finally went on a real family vacation just the 4 of us… Last week, our family got to enjoy a slice of paradise on a private beach on Hilton Head Island.  We loved EVERY SINGLE MOMENT of our time away. We stayed on a plantation called Palmetto Dunes. Our villa was right on the ocean. We had a view that was just beautiful! The kids loved the beach, the sand and the pool!

If you have never been there, don’t go there looking for tourist attractions…Hilton Head is not a Myrtle Beach or something like Pigeon Forge TN  with all kinds of rides, stores, main strip life etc. Hilton Head is quite the opposite. That is why we wanted to go there… VERY much a low key family oriented time away for us. Our initial destination was a trip to Destin Fl, it was of course canceled because of the oil spill. We did not want to risk Roman and Sheridan’s first time ever seeing the ocean or the beach with oil etc. So we made plans for Hilton Head instead. Looking back, we definitely made the right decision. 

We had an absolute blast! We played Pirate Putt-Putt, went on a Dolphin/Nature cruise, went to the top of a lighthouse, ate great food, enjoyed the pool, ocean, beach, sand and fun in the sun. More importantly, we were together, the 4 of us. Moments and memories from this trip I will cherish always and forever. The pics I took of the kids are just priceless playing in the sand. I have said this sooo many times in my updates…we have been given the opportunity to look at things much differently. We look at our kids and our lives differently than “normal” parents do because of everything we have endured. When relapse fears and even death are a part of your daily lives, you have no other choice but to look at things differently. There were many times, I teared up watching Roman play in the sand, play with Sheridan, them being silly together, Mike walking on the beach with just Roman by himself. Trust me, the video camera and regular camera of course were on A LOT. Many times I looked up to the beautiful sky and mouthed “thank you God for this day, for this very moment”. Being emotional came very easy for me as other families were enduring horrific times, we were enjoying the very best of times. We needed to get away and we had a wonderful time away. It could not have been better for us. I hope all of you enjoy the pics. They speak for themselves. Click on link for pics...

http://picasaweb.google.com/jody.fariello/Vacation2010?feat=directlink

The only other thing I wanted to mention to all of you is that Mike and I are gearing up for the NEUROBLASTOMA CONFERENCE on July 8-11 close to Chicago. We are so looking forward to meeting other amazing NB families who are in the same place we are. Feeling the same feelings we do. And most of all, to get any and all info on this deadly cancer our son has.

Also, after we return, Roman will have a blood draw that week of the 12th to check his Alkaline Phosphatase level. PLEASE pray this level has gone down from the 1100 it was. I am not sure what will happen if this level is still high. I cannot think of that right now…Only positive thoughts.

Thanks for all of your continued support and love for our family. It means the world to us.

God, we thank you for the gift of precious time with our son Roman. We thank you for our time away as our family needed it to regroup and replenish and recharge. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello  
May 27, 2010
Hello to our family, friends and new friends!

Pics of Roman, click link...

http://picasaweb.google.com/jody.fariello/RomanSCTScanMay2010?feat=directlink

Ok, today has been very long and extremely scary for us…waiting for CT results and lab results…so please bear with me here as I try to explain things to you as best I can…Dr. Wagner just called and spoke to Mike with results…

Roman had his CT scan of his head, chest, abdomen and pelvis. After a long day of over the top stressful waiting, Roman’s CT scan did not come back “CLEAN” or “CLEAR” however you want to call it. He has what is ASSUMED to be called a BONE ISLAND on L-3 of his spine…in the lumbar area. It is small in size, about 1 mm. Apparently, it has been there for the past year! NEWS TO US!!!!!!! This was pointed out by about 5 radiologists today at Children’s. Dr. Wagner and the other docs who viewed this today, all are in agreement that this is NOT Neuroblastoma for two reasons: it didn’t glow on the MIBG Scan and if it were NB, it would not be bone growth but would be more of a bone decrease. Ok, I am glad they are convinced as I am NOT…because as a cancer mom…I know my stuff pretty well…and I know that for a fact..the MIBG SCAN does not ALWAYS glow when there is Neuroblastoma present….I know, comforting isn’t it!!!! Welcome to our world! So, Dr. Wagner wants to keep an eye on it, that’s all we can do.

The other SCARY news of the day is Roman’s lab work. All of his labs came back just fine and all within normal ranges…except for an enzyme called ALKALINE PHOSPHATAS. Normal range for this enzyme in Roman’s past labs were 200’s or 300’s. From the labs they took the other day, this number went all the way up to 1100.

Ok, what does this mean for Roman….well, we are not sure, that’s why Dr. Wagner ordered the same test today and drew more blood to double check this enzyme. The result tonight was at 1000. So, it went down 100 points. This is an enzyme that if elevated like Roman’s, could indicate bone or liver disease. It is also taken into consideration that roman had the croup almost 3 weeks ago…Dr. Wagner said this number could be reflecting that he was febrile and had something going on. With all of this being said…we are going to do a repeat blood draw in 6 weeks. To give this number some time to go down…Dr. Wagner is pretty confident that the number being so high and the bone island have no connection to each other. Well, I am so glad he is confident with that, I am not. I didn’t ask what happens if the number doesn’t go down by then….

So, in 6 weeks, Roman will have a blood test to recheck this enzyme level. Also, Roman will have a CT Scan in October. Since Roman is doing well, feeling well, no pain complaints, eating and growing well, Dr. Wagner wants to drop the MIBG Scans all together as long as Roman is well.  He said obviously we can do one if need be. I am mixed on this, with today’s news of course. But like I said, there are no guarantees if we do or we don’t do an MIBG scan anyway. He has had so many, I’d rather him stop getting exposed to MIBG Scan if we can help it.

That’s the news. Roman’s CT Scan did NOT come back what we were expecting. Roman’s labs did NOT come back what we were expecting. One thing I have learned on this journey is there truly is never a dull moment. There will NEVER be a time where Mike and I are not filled with worry. There will NEVER be a time where we will be able to just sit back and relax. There will NEVER be a time where we won’t be looking over our shoulder. There will NEVER be a time where we can be just NORMAL EVER AGAIN.

Please, pray for Roman. Pray for OUR SHINING STAR, Nicholas DeFelice and his mom and dad who are dealing with tough decisions with a relapse. And please pray for all of our dear friends on carepages and caringbridge. I am emotionally drained, physically ill, and just plain wiped out. We thank you for all the prayers and for emails, text messages, messages on our carepage and on my facebook. All of you mean the world to us.

God, please keep blessing our Roman as you have. Please give his body what he needs to get that number back to normal range. Please let that bone island be just that and NOT NB or anything else.  Jody, mike, Sheridan and Roman Fariello

May 26, 2010
Hello to our family, friends and new friends!

We got the call as soon as we walked in the door…ROMAN’S MIBG SCAN WAS NED!!!!!!!! NEGATIVE!!!!! NOTHING FOUND!!!!!! Thank you God and ^^Corey^^ for keeping Roman safe. To see pics of today's visit, click on link....

 http://picasaweb.google.com/jody.fariello/RomanSFirst6monScans?feat=directlink

Tomorrow first thing in the morning, we have a CT scan of head, chest, abdomen and pelvis. Then, we have our clinic visit with Dr. Wagner. I will update as soon as we get home from our visit tomorrow afternoon.

Last night, Mike and I both slept crappy. I have been up since 4:00am. My mind was being overtaken with horrific thoughts and what if’s. I had a nervous energy and got up and packed for today’s hospital visit. Had everything ready and packed very quickly. I have said this so many times before to all of you Roman supporters…what these scan days do to our bodies, our minds, our thoughts, our stress levels, our routine, our hope, our faith, our entire lives… there is NOTHING to help us make it better …except hearing those 3 little letters…NED! Those 3 little letters mean EVERYTHING to a Neuroblastoma family like ours. At this time, we know more than anyone how blessed we are to have Roman remain NED. It seems the farther out we get with Roman’s NED status, the more difficult it is for me at scan time.  I wish I could help myself not get so worked up, but I can’t. And, if allowing myself to be “worried sick” at scan time is what gets me thru to keep my sanity, then so be it. I get thru. So does Mike. So does Sheridan. And, Roman…he IS the epitome of true strength. He CAN and DOES get thru.

To our dear friend and Roman Supporter Anne Schultz…your Holy Water you gave us has been put on Roman’s forehead by Mike, just about every night at bedtime since the last set of scans 6 months ago. If you ask Roman what it is for, he will tell you “to keep the cancer away”. Anne, we thank you so much for being in our lives and for your loving support for our son and our family. 

And so now we have one more day at the hospital.  We are looking forward to seeing Dr. Wagner and Polly tomorrow. I will update tomorrow when we get home. To ^^Corey^^, Roman’s angel in heaven, we thank you for keeping Roman safe as you will always be with him. God, we thank you for blessing our Roman as you have and for giving us 6 more months of precious time with our son. The support we have is such a gift. Our hearts are full! Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello

May 24, 2010
Hello to our family, friends and new friends!

These next few days are the days Mike and I and all of our Roman Supporters dread the absolute most. Roman has his MIBG injection on Tuesday (tomorrow), MIBG Scan on Wednesday and CT Scan and visit with Dr. Wagner on Thursday. Roman will have labs drawn on one of those two days as well. Mike and I would love to just embrace the fact that Roman is feeling well, doing well, eating well, playing well and growing well. However, at scan time, none of that matters to us. The only thing that will make everything ok for us is to hear that Roman remains NED!!! We pray that happens as this is our first set of scans after being away for 6 months. I will update with results as I get them.

I want to take this time to tell everyone that Lauren “Our Angel” about a year ago started to write a song for Roman. Just this past week, Lauren completed his song. It is respectfully called “ROMAN’S SONG”. I have tell all of you, when you really listen, I mean REALLY listen to the words of this beautiful song, you will be balling your eyes out. Have tissues ready when you listen to it. She wrote this from her heart. Not many people get to experience up close and personal, what Lauren experienced with our family and Roman’s cancer. She lived with us at the worst time during Roman’s chemo. She was there for Mike and I, there for Sheridan and of course there for Roman. She truly is OUR ANGEL. She was a gift from heaven sent to us at the most horrific time in our lives. And she still is a HUGE part of our family today as we just adore her and Roman and Sheridan love her to pieces. She will always be a part of our family.   

I put some of Roman’s pics in movie form to the song. It is just so beautiful. Lauren we love you and you are such a blessing to us. We thank you for writing and singing such an amazing song. And special thanks to your dad for playing the guitar and your brother for the recording, just amazing! I think it’s a hit! If you have trouble listening to the song, let me know. Enjoy!

Click on link to see video and listen to ROMAN’S SONG…turn up your volume…..

http://picasaweb.google.com/jody.fariello/Movies02?feat=directlink

God, please keep blessing our Roman as you have. Please give Mike and I the strength, hope, and faith to get thru this week of scans. Jody, Mike, Sheridan and Roman Fariello

May 13, 2010
Hello to our family, friends and new friends!

I am just getting word from a very dear and close cancer mom friend of mine, Denise DeFelice, that OUR SHINING STAR Nicholas, has just RELAPSED in the worst way possible. His MIBG SCAN came back as positive in his bones. He had a bone marrow biopsy this morning and won't know the results of that until probably next week. I am numb right now for I have been following OUR SHINING STAR NICHOLAS since right after Roman was diagnosed over 3 years ago. I feel anger and great sadness for Denise, Brian and sweet Nicholas.

It is in times like these where my faith and hope goes right down the toilet. I am pysically ill for my friend Denise as a fellow cancer mom. I HATE NB!!! I DON'T UNDERSTAND!!! I am asking and begging all of you to send messages of support to NICHOLAS and his parents, as I know Roman supporters have done for me in the past. It is in times like these where messages of support mean the very most to a cancer family. That's where we get our strength to be there for our children fighting for their lives, because of supporters like all of you. Please go to carepages.com and type in NICHOLASDEFELICE no space and all caps. Leave them a message and tell them you are a Roman supporter so Denise and Brian know who you are. cp:NICHOLASDEFELICE

I thank all of you in advance for supporting us as we support yet again another family getting devastating news about their pride and joy NICHOLAS, who happens to be OUR SHINING STAR here in Hebron KY. We love you Denise, Brian and sweet Nichaolas! GO NICK POWER!!!!!!!!!!

God, please give Denise and Brian the strength they need now. And give OUR SHINGING STAR a miracle.

Jody, Mike, Sheridan and Roman 

May 10, 2010
Hello to our family, friends and new friends! 

To see pics from Butterfly Walk and Mother's Day, click on link below....

http://picasaweb.google.com/jody.fariello/ButterflyWalkMotherSDay2010?feat=directlink

I want to first start off by telling all the moms out there that I hope you had a wonderful day yesterday. My day started out beautifully. Sheridan came in so excited to give me her present she made for me at school. I gotta tell ya, I balled like a baby after I saw it and read it. I was very emotional. She is the sweetest daughter! SheridanBug, I love you more than all the stars in a country sky! Thank you for making my Mother’s Day so special yesterday. I will keep it forever and ever. I just had the best day with Roman, Sheridan and Mike and our family!

I also know that yesterday was a sad day for many moms out there who couldn’t be with their children because they are in heaven already. I thought about all of you throughout the day yesterday. I cannot even imagine what those moms are feeling on a daily basis, much less on Mother’s Day. I just wanted you to know that my heart was heavy for you yesterday.

On Saturday morning, the RESCUE ROMAN TEAM walked in the BUTTERFLY WALK for CANCER FREE KIDS. It was extremely cold and windy out, but we still had 38 walkers brave the cold and the wind for Roman. And for that we could not be more grateful. I am very happy to announce that the RESCUE ROMAN TEAM raised $1,065.00!!!!!!  WOW!!!!!!! We could not be happier, that the money raised will go directly to Cincinnati Children’s Hospital for research. To everyone who walked and everyone who donated for Roman, our hearts are full. We did have a good time, despite the cold and wind. Roman was called up on stage for the survivor ceremony to get his courage medal necklace. Lauren “our angel” went up on stage with him. Roman requested Lauren to go up with him on stage. She was very emotional being up there not only with Roman, but with all of the survivors. It is an emotional ceremony. Lauren, we adore you, love you and cherish you always. It was so fitting that you be up there on that stage with Roman. You were with him and our family at the lowest of times. Here we are, 3 years later, and you are with him on stage for a survivor ceremony. It was more than perfect! We love you Lauren!!!

The day was also a day of memories for us, as it marked sweet ^^Corey’s^^ cp:coreynickell  1 year in heaven. We thought about him all day. We answered questions from the kids about him again. It was very emotional for us remembering the timing of everything that happened 1 year ago when Corey went to heaven. We even looked at the clock at that exact time when he came to say goodbye to Roman by touching him on his back. Ironically we were driving in the car just like last year. I looked at Roman and just smiled at him. We will always remember and cherish you sweet ^^Corey^^ forever.

I also wanted to let you know that our dear friend and Roman supporter, Kim Meucci (Creative Memories Consultant), is asking for our help in spreading the word that she is raising money for the MAKE A WISH organization. She is using Roman’s story in hopes of reaching people who would love to make a difference for a child’s last wish, like Roman’s playground in our backyard, thru their own pictures and memories. Kim has made a couple of memory books for me, and I even gave one of them to our Kentucky Governor Steve Beshear when we met him. She does AMAZING work transforming your pictures into memories that you can keep forever. I have attached two documents: one is of Roman’s story with his Make A Wish and the other is a flier with the time, dates and location of where YOU can help kids like Roman thru Kim and CREATIVE MEMORIES get their final wish.

Anyone who knows or lives by us, sees at any given time during the day, about 6 or even 7 kids playing on the amazing Rainbow Playground in our backyard. Roman enjoys his WISH on a daily basis. We definitely made the right choice by not going on a trip somewhere or something that was over with rather quickly for Roman and Sheridan both. Instead, Roman, his sissy and their friends get to enjoy playing on the WISH THAT KEEPS ON GIVING every single day. Talk about making memories!!! So, please keep Kim in mind for helping you with your family photos, etc. And, remember, that on Friday June 25th, or Saturday June 26th, you can help the MAKE A WISH organization put a smile on a child’s face who is facing the worst. We thank you in advance if you can make it in honor of Roman those two days. And to Kim Meucci, we couldn’t be more honored to help you spread the word about your amazing and creative work, and to help the MAKE A WISH organization.

I guess that is about it for now. Roman does have scans coming up at the end of May. He realizes that he has been away from “his hospital” longer this time. He even asked about it. I will post exact dates as we get closer. Roman is doing well. Everyday Mike and I count each blessing and never take for granted the gift of time. Please continue to pray for all of our fellow carepage/caringbridge families.

God, we thank you for blessing our Roman as you have. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello               

April 25, 2010
Hello to our family, friends and new friends!

It’s officially after midnight and I am still awake…. so here goes……

Today, April 25th, marks Roman’s 3 year anniversary from being diagnosed with Stage 4 Neuroblastoma. It has been a very long 3 years with so many ups and downs. But, in a strange way, time still has flown right by us. Mike and I remember every single detail of that life changing day today as if it were happening all over again.

It is very apparent that Roman is a gift from above. We know this… in our hearts and our minds because of much faith, hope and knowledge of this deadly disease, that Roman is a MIRACLE walking among all of us. He doesn’t even begin to truly grasp just how blessed he really is because he is only 4 yrs. old! He has lived a life that most people couldn’t imagine in the last 3 years. And, thru it all he consistently smiles and doesn’t complain; he just does what he needs to do.

In the world according to Roman, his “fears” right now consists of a big bumble bee or wasp stinging him, falling off his bike, falling off our bed wrestling around with his sissy and scraping his knees on the concrete. All of these things are typical or “NORMAL” of a young boy. He has no clue that always lurking behind him…is the evil NB. SO relieved he don’t know the harsh reality of his disease just yet. In time he will though. Sheridan will know sooner than Roman will.  A conversation Mike and I are not looking forward to at all with either child, but we need to do it, and soon with Sheridan. Our pediatrician told us that around age 7 is the age of reason for most kids. Sheridan will be 7 in July. We will mentally prepare ourselves until then and maybe seek some guidance from Childrens Hospital. The biggest thing is telling her the harsh reality and how it could come back and make Roman sick again. What we DON’T want to do is scare her into immediately thinking Roman WILL be sick again. We don’t want to say the wrong things to her. I am confident that we will know how to handle things with her (with help) and any questions she may have at that time.

But………………………………………………..right now, LIFE IS GOOD!!!!  We are enjoying every single moment of every single day, even the days where both kids are on our last nerve.      

This day marks so many milestones for Roman’s health, our family and his young life in general.  We have had to live differently since the day he was diagnosed. We have had to live moment to moment. We have had to live one day at a time. Sometimes, one minute at a time like during scan week. We have had to look evil NB in the eye more times than I can count. We have had to watch our baby boy grow up waaaaay too fast. We have had to watch him endure more than any parent should ever have to witness with their child.

We have had some scary episodes with Roman, fearing the worst. We have been forced as cancer parents to think gloom and doom as a way to kind of prepare us for that horrific WHAT IF that plays in our heads over and over again. Mike and I are a team in that way. We don’t ever want to be blindsided by this disease if we can help it. Call it our very own defense mechanism; to think the worst and be prepared for whatever comes along. Cancer life is one big daily mind game. It’s a daily challenge for all of us. At the end of the day, all that matters is that WE WIN, and not let cancer win. 

Being cancer parents over the last 3 years have forced Mike and I into being much stronger people. We are stronger individually and as a couple. We have grown in ways that married couples take for granted even under normal circumstances. We have both cried more in the past 3 years than we have ever cried before. It doesn’t take much to make us cry even now. Sometimes, it’s the little things that push us over.  Other times, we think about morbid things and have morbid discussions from time to time. We are forced to; we have witnessed too many children being taken away just like that. Don’t like to think about it or talk about it, but when you live it and it’s your unfortunate reality everyday, we have no other choice but to discuss unpleasant things from time to time. Again, that’s where that defense mechanism kicks in for us.

We have had sooo many wonderful loving and amazing people enter our lives throughout the past 3 years because of Roman’s cancer. I can’t even begin to tell you how many. The Benjamin family, the Bertline family, the Hendren family, wonderful supporters like Anne Schultz, Sharon Shultz…I could go on and on but to ALL of our Roman supporters, we love you and thank you.  Our hearts are full. Unfortunately, we have also experienced great sadness with people leaving our lives because of Roman’s cancer. We know we are not in control of things. God is in full control. He is driving. We are just along for the ride. He gives us what and who we need and for how long too.

This journey with our son has had many horrific moments I’d like to forget…but for how ever many yucky moments we have had, there have been10 thousand more amazing moments above and beyond our comprehension…

- We have been reminded that a child like our son Roman, who has gone thru the worst possible thing in life ever, has taught so many valuable lessons to so many. Had he not gone thru what he has gone thru, I feel our lives would be sort of empty and sort of plain, kind of ordinary. Almost like missing something.  These are just a few of things I can put into words that Roman has taught us……..

- Roman has brought us a new set of eyes to look thru as his parents.

- He has taught us how to look at people differently with compassion. He has opened our eyes, and our hearts.

- He has shown us how to be strong, even when you don’t feel like being strong.

- He has shown us how to live simple.

- He has taught us how to appreciate the little things much more.

- He has shown us how to truly look at ourselves and change what needs to be changed. - He has shown us how to not back down from anything, even a deadly cancer.

- He has shown us how to get involved, even if we think “someone else will do it”.

- He has taught us such amazing endurance and Roman gives new meaning to that word.

- He has shown us how to live each day as if it were our last.

- He has reminded us that there are so many unselfish, loving, caring, amazing people        in the world.

- He has shown us how to be kind to each other.

- He has shown us what happens when everyone comes together to make a difference.

- He has reminded us daily to NEVER take anyone for granted.

- He has shown us what it means to truly be ALIVE.

Roman has taught us how to love more in the past 3 years than ever humanly possible. I could go on and on, but how one little 4 year old could accomplish so much in just 3 years of his young life, is nothing short of AMAZING!!!!!!!!!!

This 3 year anniversary is a time for us to CELEBRATE YOU Roman!!!! Mommy, Daddy and your sissy Sheridan are so proud of you. We have said it before and we will say it again…The Fariello family puzzle only works well with 4 pieces, and Roman you are the 4th piece of our family puzzle! You and your sister mean the world to your Daddy and I. We love you both more than words. The past 3 years has changed all of us as a family. It has definitely brought us closer than we could ever imagine. There is NOTHING more important than our family unit. And this family unit is a strong one!

We want to take this time to thank ALL of our ROMAN supporters near and far. Without your emails, messages, cards, gifts and loving support the past 3 years, we would not be where we are today. Roman is one BLESSED little boy and we are one BLESSED family by having all of you as our support team. We thank you for sticking with us for the past 3 years. We hope you will continue to stick with us as we fight on thru this UNKNOWN journey with our amazing CANCER WARRIOR ROMAN. Here’s to Roman having MANY MANY MANY more milestone anniversaries in his life. God, please keep blessing our Roman as you have. We thank you God for the gift of precious time with our son. Love to all of you! Jody, Mike, Sheridan and Roman Fariello   

April 23, 2010
Hello to our family, friends and new friends!

I am informing our Roman supporters that you only have 2 days left to guarantee a Butterfly Walk 2010 T-shirt if you register today or tomorrow. Registrations made after that, we CANNOT gaurantee a tshirt with your registration. So......if you havn't registered yet and want that t-shirt, you have to register today/tomorrow. Go to www.butterflywalk.org ...team captain is my name and the team name is RESCUE ROMAN. You may also make a donation there as well, if you are not able to walk with us and still want to help.

We thank so many of you already who have registered to walk with us and those of you who made a donation. This walk is THE MOST important to us and directly helps raise money to find a cure for Neuroblastoma. Roman don't quite understand at the age of 4 just how important this walk is to his life and his future, but he will in time!

We are more than blessed to have Roman even WALKING in this walk beside us... for we know soooo many families who have lost their child to this horrific deadly childhood cancer we call Neuroblastoma.

Will do an update in a couple of days. Have a great weekend everyone!   

Jody, Mike, Sheridan and Roman Fariello
March 11, 2010
Hello to our family, friends and new friends!

Wow...it's been a really bad 24 hours in the childhood cancer world. I need all of you Roman supporters to pray very hard for a beautiful little girl name Isabella Battle cp:IsabellaFrances. She was in the hospital battling leukemia when Roman was in. After months and months of "NORMALCY" for sweet Isabella and her mommy Monica, she has RELAPSED. I cannot tell you how hard it was to hear about her relapsing. I am ill for Monica. As a parent, you never want to hear "your child has a deadly cancer"...but after fighting the beast once, as a cancer parent you never want to hear "the beast has returned" and the word "RELAPSE". Please, if you are a spiritual person and have it in you to pray for Monica, Isabella and all the unknowns that lie ahead for their family....we know prayers are heard, please pray for them.

As if that was not enough bad news to share with all of you, in the ugly world of Neuroblastoma, we lost TWO beautiful little girls yesterday. cp:BethanyGrace age 3 and Layla Grace age 2 www.laylagrace.org   Both girls were diagnosed at age 16 months, that's 2 months younger than Roman at diagnosis. Both girls had stage 4 just like Roman. Both girls had "black eyes" just like Roman's eye. And, ironically, both girls shared the same name “Grace”.

Last night, as I read that both girls have gone to heaven to play with the angels already up there, I wept hard. I feel when I read NB history on other kids I always compare their history with Roman's. How can I get beyond that??? Well, I am answering my own question....I will NEVER get beyond that. I feel we are going along life's highway, trying to obtain and maintain the sense of "NORMALCY" that we have, and then I read about kids and death and relapse. I feel helpless all over again. Scared. Worried. And the FEAR that sets in is indescribable and unimaginable. The time that elapses between living "NORMAL" and hearing about sad news, is like a rollercoaster ride for me. Hearing the news rocks and shakes the very foundation that I am trying to build again. And each time I get sad news, it knocks me right off that foundation. It rattles it. Shakes it. And I feel that I have to start over and over again.

I recall Mike and I having a conversation about feeling like Roman's got a number that’s spinning around up on a big wheel somewhere. We are just blessed so far that our number has not yet been called. All of the NB kids are just spinning around on this wheel. So many families hanging on like us, so many families who already have had their number called and so many families waiting to be diagnosed and put on the big wheel. I really cannot think of a worst wheel to be on.

I am feeling bla today. This news does rattle me and shake me. It makes me think of bad things with Roman and I don’t like going “there”. Last night around 12:15 am, I went to check on Roman as he slept. I touched his little hand and cried right there, begging God to keep him safe. I have not had an episode like that since Erik Ludwinski past away a few weeks ago. Just seeing Roman lying there, so peaceful with no worries, listening to him breathe, made me feel so very blessed. I kissed his little hand and touched him briefly. Wept a bit more then left his room. I was scared to leave his room but I knew I had to go or I would wake him up.

It is in those moments, when I am facing my worst FEAR that I feel weakest...that horrific fear of Roman being taken away from us with a relapse. I guess I am entitled to feel weak once on a while. I am strong for the most part. As long as we have our friends, our families and our amazing circle of supporters that we have around us, Mike and I will endure anything we have to endure while on this journey… and the fact that I can come on here and let my inner most feelings pour out dealing with all kinds of emotions all over the place, means the world to me. I have said it many many times…this is my therapy. My place to let loose and let my feelings and raw emotions out.

For many of you, I know being on this journey with us is anything but easy. I know our close friends the Powells have teased us recently saying “it’s not easy being friends with the Fariellos”. To the Powells and all of our closest friends and family, we could not be more loved and feel more friendship than we do now. It’s not been an easy road on any of us. After almost 1 month shy of 3 years total of Roman Updates, we still have the same faces and many new faces supporting us. We still feel loved and supported. When I get on here and talk about feelings that I am having, our friends and families go thru the same thing feeling helpless all over again. To all of you who stood by us, and continue to stand by us, we thank you and love you more than you know.

Ok, now that I got all of that out…Please don’t forget to pray for the above mentioned families. They need each and every single prayer. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

March 9, 2010
Hello to our family, friends and new friends!

Everything has been going very well in the Fariello household. Roman’s teeth have been doing great. No problems with his new mouth thank goodness. I really don’t have much to report on our end here. I just wanted to take this time to remind everyone about getting registered for the BUTTERFLY WALK coming up in May. 

If you want to walk with us for the BUTTERFLY WALK on SATURDAY MAY 8th at 9:00am, you can register at www.butterflywalk.org or go to the RESCUE ROMAN fundraising page here:

http://www.active.com/donate/2010Butterflywalk/2010RESCUEROMAN

I want to get as many people registered early as I can because I want to order all of the team members a crazy hat to wear and maybe carry a noisemaker or fun stuff like that to show our team spirit! All of you who don’t already have a RESCUE ROMAN t-shirt and bracelet will get one to wear for that day. Last year the RESCUE ROMAN TEAM won for BEST TEAM SPIRIT!!! I want to carry on that tradition for Roman so he can see that all of us have the BEST team spirit ever for him and his life!!!

So, of you are able to walk for Roman’s life and show him that you support him on his journey to find a cure for this horrific deadly childhood cancer, PLEASE join us. I promise you will have a great time with us and all of the kids! If there are any questions about joining our RESCUE ROMAN TEAM or registering or making a donation if you can’t join us for the actual walk, please contact me. I can help you anytime.

That is really all I have for now. We thank you in advance for joining our team. Roman thanks you so much for supporting him on his journey to find a cure for Neuroblastoma. It truly does mean the world to our family!

Love to all of you! God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

February 20, 2010
Hello to our family, friends and new friends!

Wow are we exhausted! Our morning started out at 4:50am waking up, getting ready to be out of the house and on the road to the hospital by 5:25am. Roman of course, as usual, woke up ready to go to “HIS HOSPITAL” as he calls it. We arrived by 6:00 am in the same day surgery area. We were seen by two surgery nurses. They took his vitals and we sat and waited to talk to the “sleepy doc”. She was such a great Anesthesiologist…she knew we were not a “new” family having dental work done just because. We so appreciated the fact that she knew we were not just a “normal” family coming in for a dental visit. It made Roman’s history A LOT easier for us. Everyone in surgery treated us very well knowing Roman’s history. A sigh of relief for Mike and I, made for an easy morning. Well, easy on our part anyway….

Roman gave up his left hand for an IV and he did such an outstanding job! He still amazes nurses and docs not needing “help” in the form of a mask with meds to help put the IV in. He is soooooo strong and we could not be more proud of him! He went to “sleep” around 7:45 and did not wake up until 10:20. So, he was out for a long time.

Dr. Greenhill is such an awesome pediatric dentist. We are so lucky to have him. And the fact that he is a Children’s Hospital dentist makes that even easier and better for Roman.  Dr. Greenhill came out to talk to us after he was done. He told us it took longer than expected because Roman had not only work done to the top teeth but the bottom teeth as well. His top 4 front teeth now have caps, along with 2 other top teeth in the back. All of his teeth in the front at the bottom (from canine to canine) now have caps on them and pretty much all teeth both top and bottom have sealants on them now. So, Roman has a brand new mouth. He also got a fluoride treatment and x-rays which told how bad not only his top teeth were but how bad his bottom teeth were too. Our hope and Dr. Greenhill’s hope is that we have no troubles with the sealants or caps coming off and that they stay on there until his baby teeth fall out. Dr. Greenhill is confident we won’t but then again, each and every child is different….specially when that child’s teeth have been altered like Roman’s have from chemo.

Roman is used to doing Propofol to go to “sleep”. But added to that today was Fentanyl for pain, Dex and Zofran for nausea. So, needless to say he was pretty LOOPY after he woke up and still is a bit loopy now but getting much better. He will be on Tylenol as needed. He will also be on a soft diet for today. Eating foods that don’t require much biting and chewing for his mouth will be a bit sore for today. They also intebated him with a nose tube and from that he has some nose bleeds caused by irritation.

Dr. Greenhill wants to see Roman in about a week just to check his mouth out.

Today was a joyous day for us, even though we’re completely beat, because Roman has yet again conquered another POSITIVE milestone on his journey. A milestone that means so much more than just some ordinary dental work….a milestone that symbolizes Roman is indeed doing very well and we are thrilled to be able to see his teeth “normal” without chemo yuck on them. It’s such an awesome thing when we are able to “move on” in a “normal” direction. It doesn’t get ant more “normal” than dental work and not cancer/scans.

We thank all of you for your support and prayers for Roman today. He is such a blessed little boy! And, so are we! God, we thank you for allowing Roman to have this milestone today…and for Dr. Greenhill to have the know how with Roman’s mouth. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

February 18, 2010
Hello to our family, friends and new friends!

So, is anyone ready for SPRING!!!!!!!!!! UGH!!! All of this snow!!!!!  One storm right after another!

I want to say a HUGE thanks to all of you for your supportive messages/emails from my last update. I read each and every one of them and they immediately let us know how much our family is loved. And to my fellow cancer warrior moms (you know who you are), your private messages reassuring me that what I am feeling at any given time while on Roman’s journey is perfectly “Normal”… I thank you. All of you have touched my heart in a way that no one else can. I thank you so much for being there for me when I vent. It means the world.

We finally got details for Roman’s dental work on Saturday. We have to have Roman at Children’s Hospital by 6:00am!!! WOW that’s early!!! His procedure starts around 7:30. Not sure how long it will take because we really don’t know what we’re dealing with as far as chemo damage. So, as soon as we are done on Saturday, I will update and let all of you know.

I also wanted to let all of you know that the Butterfly Walk details are complete. I have a RESCUE ROMAN TEAM page set up so we can track donations/team members joining our team also thru Active.com. Our hope is to have A LOT of walkers join us for that day… 9:00am on Saturday May 8th at Cottell Park same as last year. If you have ANY questions at all, please don’t hesitate to email me.

To register for the walk, go to www.BUTTERFLYWALK.com  click on “Team Information” to the left, then scroll down to click “JOIN A TEAM”….it will then take you to the Active.com webpage for the Butterfly Walk to get registered. You can do this via credit card. And, again, if you have ANY questions at all, please let me know. I can help you. Roman and the so many kids with this HORRIFIC and DEADLY disease, thanks you for your support. The only way we are going to defeat Neuroblastoma is thru research and research requires a TON OF MONEY.

There is no amount of money on this planet that even compares to Roman’s life and the lives of children who are just like him. We thank you for supporting us on this walk!!!  If you do decide to walk with us, we will give you a Rescue Roman T-shirt to wear and a Rescue Roman bracelet. And, we as a team want to do some fun and crazy things this year not only to show our team spirit but, to celebrate Roman’s life. For we know each and everyday he is with us, is a miracle and blessing. So, think about the walk in May and think about joining us for that morning. It will be A LOT of fun!!!

I do believe that is all I have for now. I will update on Saturday sometime with how Roman did.

God, if all Mike and I have to deal with right now is dental issues for Roman then so be it. It’s a far cry from all he has endured and will continue to endure as he grows. God, please keep all of our fellow carepage/caringbridge families in your hands. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello 

February 10, 2010
Hello to our family, friends and new friends!

Well, I wasn’t sure when I would be sitting down to type a Roman Update again. I certainly didn’t think I would be doing one this soon. I am experiencing some horrific anxiety and tremendous sadness today. I woke up this morning, checked in with a few of our carepage/caring bridge families and learned that evil Neuroblastoma struck again. From my fellow cancer moms Denise DeFelice and Dot Dunn, I learned about Erik Ludwinski. 

Erik lost his battle to stage 4 Neuroblastoma last night. His fight is one that struck me like no other. Erik was diagnosed at the age of 6. Erik took his last breath at the age of 25. You see, Erik went thru treatment back when he was 6. He defeated evil NB and was termed NED…NO EVIDENCE OF DISEASE for 13 years!!! Yes, he was NED for 13 straight wonderful years until the age of 20. He relapsed again and again and was fighting all the way up until he took his last breath at the age of 25. So for the past 5 years, he fought long and very hard with his family right beside him. I cannot tell you how my heart is breaking for this family right now. I just found out about Erik’s battle and I am in tears and feeling ill in my stomach.

You see, as we are going along life’s highway here of being blessed with NED status for Roman, we will NEVER EVER be NORMAL. We will NEVER EVER be FREE from the horrific fear that NB will take Roman away from us someday. We will NEVER EVER wake up and feel FREE from NB. Stories like Erik’s remind us ever so much how blessed we are to have Roman breathing and walking. The fear of today’s news completely changed my focus today. Sheridan had another snow day and the kids were playing inside. After I read this news, I immediately looked at Roman and began to tear up. How could I not tear up after Erik’s story. It scares me more than anything. FEAR had settled inside of me and wasn’t going anywhere.

When Mike came home, I filled him in on Erik’s story and now he is feeling ill along with me. I cannot even describe that ill feeling to any of you. I wouldn’t wish what Mike and I feel every day on anyone. Our days are consumed with what ifs. It’s all about how we handle the what-ifs in our heads and in our daily lives. We have to balance them out. If Mike and I didn’t have any kind of balancing act, our lives would be 100% consumed with NB. Its days like today, where my feelings become rocked with FEAR that I struggle the most. I feel Mike and I do a pretty good job at balancing NORMALCY for the kids. But in the NB world, NORMALCY can only go so far. Then the horrific reality sets in. The horrific reality that slaps us right in the face, kicks us right in the gut, punches us in the arm, forces us to think the worst for Roman and almost strangles us at times. Strangles us to a point where we are right back where we started from…FEAR. 

This is not an easy way to exist at all. But we do it. It is a vicious cycle. I wish I could wave a magic wand and make this NB cycle go away forever. I wish Mike and I could wake up one day and not have to wonder what if. One day to wake up and not be faced with FEAR. I wish we could look over our shoulders and for once it not be there hitting us directly in the face. BUT I CAN’T!!! Oh God how I wish it were that easy.

This family lost their son. A son they thought defeated EVIL NB. A son for 13 years was living “NORMAL”.  A son for 13 years was living “FREE”. When I say that we do not live “NORMAL” or “FREE”…  I mean it!!! And if you even had a doubt before, then Erik Ludwinski will take your doubts away now. Time is very precious. Time gives us the opportunity to do things better. Be nicer. Be kinder. Be more patient. Be more loving. Be more giving. Share. Laugh. Do good things for one another. Turn a bad into a good. Kiss your kids. Play with your kids. Love your kids even when they are on your last nerve. Tell them you love them. Tell them you love them even more today than yesterday. Don’t waste one single moment. Ever! I am quite certain that the Ludwinski family didn’t waste one single moment ever with Erik. Please pray for this family.  

Ok, thanks for letting me vent and get out the update that was brewing inside of me. I needed to let it out. And I want to tell one of my best gal pals, my twin Debbie Powell…… THANKS for being there for me today with much needed laughter. You helped me get my mind off of deadly NB today and helped me thru a very rough day. I love you for that.

God, please keep Erik’s family surrounded in peace, love and strength today and always. God, please give Mike and I the strength to keep on going as we have for both Sheridan and Roman. Please give us the hope and faith we need daily to keep on going even when it’s so very difficult to. God, please keep blessing our Roman as you have. Special thanks to all of you for your continued love, support and prayers for Roman and our family. Jody, Mike, Sheridan and Roman Fariello

February 2, 2010
Hello to our family, friends and new friends!

Lately, when I sit down to type an update I look back to how much time has gone by since the last update. That’s a good sign letting you know we are definitely enjoying NORMALCY in the Fariello household. Everything is going well for us. I cannot believe how fast time goes right on by us. I just booked our fist real family vacation yesterday for June. It will be here before we know it!

I wanted to let everyone know that on Feb. 20, Roman will have some dental work done, thanks to chemo. He will be put to sleep. While he is under, he will have x-rays taken to see what exactly is going on in his mouth and what we are really dealing with. I do know for a fact that he will have caps put on his top front 4 baby teeth and another fluoride treatment. So, I will fill all of you in on what happens later that day sometime with an update.

I also wanted to throw a little reminder out to all of you about this year’s BUTTERFLY WALK. We walked in it for our first time last year as the RESCUE ROMAN TEAM. It is a walk that is near and dear to us because of Roman’s fight. It’s an extremely important walk for kids like Roman with this very deadly disease. Money raised goes directly to Neuroblastoma research at our very own Cincinnati Children’s Hospital Medical Center. We will definitely be walking as the RESCUE ROMAN TEAM again and would love for Roman’s team to grow even bigger than last year.

The walk this year is on Saturday MAY 8th at Cottell Park. I just got all of the walk info this morning. As soon as I get the RESCUE ROMAN TEAM page up and going, I will let all of you know so you can either join the team to walk with us or simply donate in honor of Roman and his fight. The walk itself is very short and kid friendly. There is PLENTY for kids to do and have fun. So, we hope you will join us for the BUTTERFLY WALK this year and join the RESCUE ROMAN TEAM.

I want to say something that I pray will not hurt any feelings…many of you who are such devoted carepage friends, followers and supporters for Roman and our family have sent me friend requests on FaceBook. I have struggled somewhat on how to tell all of you this but knowing that many of you are cancer moms yourselves, will hopefully understand what I am about to say then… I just recently started Facebook. It’s fun. It’s connected me to people who I would not normally have connected with.

I am truly blessed that you want to be “involved” with me on FB…but, please understand that as a cancer mom, I am finding out that there is LIFE after CANCER. And, I have my Roman Updates on Rescue Roman.org and my carepage updates that I do as well. But FB is for ME. It’s a place for me to be CANCER FREE. And if I become friends with all of you who are fellow cancer moms etc. then FB is not longer a cancer free zone for me to keep my sanity. I hope all of you understand where I am coming from. I just need space in my life that is NOT cancer related to my son or my family. It’s not about Roman, Sheridan, Mike or our journey as a family with Roman. It is my escape and my down time. It is for Jody alone. I enjoy getting on there and reading about all of the silly insignificant things in life that people talk about and share on there. WHY….because the last almost 3 years of my life, has been completely consumed in Roman’s Cancer. I am finally able to BREATHE again. I am finally able to get on a stupid insignificant website and actually chuckle out loud rather than be angry that someone is acting stupid and saying stupid things that don’t matter and actually having fun.

When this journey began, I NEVER thought I would ever feel this way. Feeling like there should not be life after cancer. That cancer is our way of life and always will be. Well, I am learning at a slow pace, my own pace, that it is not at all our way of life. It is actually OK to move on from cancer. Roman is a gift. What he has been thru, has endured and what he will still go thru, is a CONSTANT reminder every day that life is precious. I am well aware of how deadly Neuroblastoma is. I wish I could take all the fear away from Mike and I and our family that we carry on our shoulders on a daily basis. That FEAR will NEVER leave us, no matter how much normalcy is poured on us. So, in the meantime, please bear with me. I am a Mom who is finding herself again. Finding out that everything in life is NOT cancer related. Finding out that it is actually ok to exhale a bit…and to laugh again, even at stupid silly non important things in life that are on FB.

I thank all of you for being so understanding. We are enjoying life to the fullest here at the Fariello household. I will ask that all of you please pray for our carepage and caring bridge families. Families can never have enough prayers. The power of prayer is enormous. And I ask you to please continue to pray for Roman. That he continues down the path of remaining NED forever.

Much love and thanks to all of you!

God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello

January 12, 2010
Hello to our family, friends and new friends!

Ok, so I know I promised pics from Christmas...well, you asked for it!!! I have about 25 pics in this grouping. It is of Christmas Eve with Mike's family, Christmas morning with Sheridan and Roman and the day after Christmas with my sisters and their families. We had such a wonderful Christmas this year. Please enjoy the pics...specially the ones of me with my sisters...we were being so silly!

http://picasaweb.google.com/jody.fariello/Christmas2009?authkey=Gv1sRgCLXKv8eBkJ6eZQ&feat=directlink

I also wanted to let all of you know that my sister Maureen called me on Sunday and read me an article about a little boy on the front of their Harrison Press. His name is Aaron Webb. He is 3 years old. He has a twin sister Katie and a 7 year old brother Zach. Aaron has Stage 3 Neuroblastoma and is in the fight of his life battling the NB beast. He does have a carepage cp:AaronWebb  and he also has a webpage www.aaronwebb.org

I have contacted his Mom and we will be attending a benefit for Aaron on this Saturday night at his church. I wanted to share little Aaron with all of you because he just finished round 5 of chemo and he has one more round to go before heading into the dreaded transplant part of protocol. He is such a cutie. I wanted all of our Roman supporters to please pray for little Aaron and his family. His Mom writes just like I do in my Roman Updates. I feel like I am reading my own words when I read her updates. Please pray for the Webb family. I thank all of you.

Roman is doing just fine. He will be having some dental work done in Feb while put under. Chemo was not kind to Roman's front teeth. And while he is under, he will get an x-ray taken to see what else in going on in that beautiful little mouth of his. 

So, please pray for ALL of our carepage and caringbridge families. I have not been "in the loop" with many of your updates. We have so enjoyed NORMALCY in every way shape and form. I know my fellow cancer families understand this more than anyone. God please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello  

December 30, 2009
Hello to our family, friends and new friends!

We thank all of you for your beautiful x-mas cards, emails and carepage messages for our family. We had a beautiful Christmas this year. Pics to come at a later date I promise.

Wow, what a year it’s been for our family. We have had a wonderful year filled with much joy, milestone upon milestone and the happiest of times.  This year showed us…

Our daughter is growing up quickly…She lost her first tooth and a second tooth is already loose too. She became a DAISY in Girl Scouts. She is reading like a pro and we could not be more proud of her doing so well in school. She even started riding her bike without training wheels and took off like she had been riding without them the whole time. Her personality is really in full swing and she is way too funny! We have so much enjoyed watching our daughter this year tackle many many firsts.  SheridanBug, we love you so much and are so proud of you. We look forward to 2010 and what your going to do next.  You are one amazing daughter!

For our little CANCER WARRIOR Roman… it’s been a year of many milestones watching him grow into the little boy he was meant to be. He is finally potty trained and we could not be happier. I have enjoyed watching him play outside from our window during the day. He started riding his bike all over place and LOVES it. He also loves running down the street to play with his buddy Dawson. He enjoys writing letters, numbers, words and names. He doubly enjoys drawing, painting and coloring. He is quite the artist! I will get Roman registered in March for preschool in the fall next year. He is more than ready. He talks about school all the time. When we drive by school he says “there is my school Mom”.

On Roman’s cancer journey this year, he has conquered sitting still for many needle pokes and CT Scans. How he is able to do what most adults whine about doing still shocks me. He truly is our hero. Roman, you never stop amazing us. We love you and are so proud of you. What you have conquered and endured, all with the most profound strength at the ripe old age of 4 and still come out smiling, is beyond any comprehension. YOU are a gift. You are awesome Roman Fariello!!! We love you and your Sis more than life itself.

This year, unfortunately, will not end without great sadness. Our family witnessed many children who earned their angel wings within our carepage and caringbridge families. But we lost one very special child who will always be in our hearts, sweet ^^Corey Nickell^^. Corey’s spirit will forever live on in our household and he will always be with our son Roman. He loved playing with the kids train table in the basement. There is not a day that goes by where I don’t think about him or look at that sweet face of his in some pics we have. Roman and Sheridan both loved Corey a lot. They talk about him frequently, sometimes as if he were still here with us. At times it is difficult for me to talk about him and answer questions they have about him… but I have to do it no matter how difficult it is. This year brought Mike and I the worst sadness ever with Corey’s death. It was so hard to watch Corey losing his battle right before our eyes, while at the same time trying to maintain optimism, strength, faith and hope for our own son. Not a position I would wish on anyone. Mike and I tried many times to not think the worst for Roman, but how could we not when death was so up close and very personal.

It took me up until recently, to truly realize how blessed we are to have our own son with us every day. It felt like a huge heaviness had been lifted from my shoulders and I could finally breathe again after coming to grips with Corey’s death. It took me a long time to really mourn Corey and adjust my inner feelings when it came to Roman being alive, such a hard thing to have to separate. It’s been very difficult on me and I don’t talk about it too much either.  I have had other cancer moms tell me what I am feeling is “survivors guilt” when it comes to Roman and ^^Corey^^. I guess that I am feeling that and I always will. Seeing him here one day and gone the next has been the absolute hardest thing we have had to witness… and try explaining all of this grown up stuff to a 4 year old and 6 year old, all the while you yourself don’t even understand why it happened. ^^Corey^^ will never leave our hearts.  

It has been a mixed bag of emotions and events this year. We have taken the good with the bad… and I want to end this NEW YEAR update with the MOST POSITIVE outlook.  We are so looking forward to a new year, a year with a fresh start. A year we hope will be filled with many milestones for both of our children. They are growing up so fast. A year that our son only has to visit the hospital twice for scans. A year that we as a family will finally be able to go on a first, real family vacation and Mike be able to take time off from work for other than Roman’s scans. A year we are welcoming with open arms.

A tribute of THANKS to all of you, our Roman supporters, who have stood by us thru thick and thin, thru scan after scan, thru scares and triumphs. We could not make this journey alone. We could not be more grateful to all of you for loving and caring about our family. We certainly didn’t realize when this journey began in April ’07 that we would have quite the following. A following consisting of literally thousands and thousands and thousands of supporters who step out of themselves even for a brief moment and read what I have to say in an update.

I have reached A LOT of people who tell me “Jody, after I read your update, I went to kiss and hug my kids”. Well, that in itself is worth everything to me and lets me know I did my “job” with my ranting in letting everyone know how precious time is. Let small problems in life be just that, SMALL.  So you better save your energy for the BIGGER problems in life. You never know when those bigger problems might hit. Make 2010 the year of words for yourself. Tell your loved ones you love them each and every day. Don’t ever miss the chance to express how you feel about them and how much they fill your heart.

To all of you we wish perfect health, abundant happy times and the most wonderful moments possible in the coming new year.

HAPPY NEW YEAR EVERYONE!!!!!!!!

God, we thank you for keeping Roman safe. Please keep blessing our Roman as you have.

With much love to all of you! Jody, Mike, Sheridan and Roman Fariello
December 16, 2009
Hello to our family, friends and new friends!

Wow, so much has been NORMAL for us in the Fariello household.  Roman, Sheridan and I have all been battling a nasty yucky cold for over a week now.  We have been getting ready for Christmas wrapping gifts and playing Christmas music any chance we get. The kids love listening to Trans Siberian Orchestra and even pick their favorite songs to listen to while we are in the car. We are almost done shopping. And I am looking forward to spending time with our families and friends over the next few weeks.

Pics to share....... 

http://picasaweb.google.com/jody.fariello/SheridanSDAISYCeremonyMargeSZakSAndPerfettiPartyDec09?authkey=Gv1sRgCJ7Zqezk1ffZOg&feat=directlink 

Let’s see…Mike had his X-mas party last weekend and we had a great time with great food as usual. It’s always a good time. Mike works with so many amazing people who support us and pray for Roman. We enjoyed ourselves and it is the one time of the year when we actually get dressed up.

Then, this weekend, Lauren “our angel” came over to spend some time with the kids and brought them their x-mas presents. Lauren we love you and we have missed you so much! Mike and I went to dinner together and went shopping while Lauren was with the kids.

On Sunday morning, my dearest friend Marge had a X-mas brunch at her house for our crazy gal group. It was so fun to spend time with my friends. Marge had EVERYTHING so nice for us. I took a pic of her table and how beautiful it looked. Marge, Sis, Kari and Kim, thanks so much for your prayers, your friendship and for making me laugh. We had great food and great laughs and made great memories…and listened to great music like Michael Buble….trust me, it doesn’t get any better than that! Love you girls!

Then, Sheridan made things OFFICIAL in her Daisy troop….TROOP 1485 had a ceremony tonight where Sher got her Daisy Pin and from now she gets to wear her vest! It’s official, we have a DAISY in the Fariello household and we could not be more happier and more proud of Sheridan. We love you so much Bug!

So, if all of that is not NORMAL, I don’t know what is. We have been enjoying every single minute of it. As we have been on the enjoying side of things, many of our carepage and caringbridge families have not been so lucky. Please keep them in your prayers at this time of year. It is extra hard on families for many different reasons. And please pray for the parents who have angels already in heaven. They need your prayers for peace and strength at this time of year.

I guess that is it for now. God, please keep blessing our Roman as you have. We thank you for the NORMALCY you have poured upon us. Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello  

December 3, 2009
Hello to our family, friends and new friends!
We had our clinic visit with Dr. Wagner this morning. It has been a visit that Mike and I have been looking forward to for a while now. Dr. Wagner and Mike and I have decided that we are more than ready to go to EVERY 6 MONTH SCANS!!!!!! HOW AMAZING IS THAT FOR ROMAN! No more 3 month scans for him!!!!! What a HUGE milestone in Roman's journey going to scans every 6 months. Mike and I will not know how to act with a 6 month rollercoaster ride instead of a 3 month rollercoaster ride. Any way "normalcy" comes for us, we'll take it:) Roman's progress is outstanding and he is doing so awesome. Dr. Wagner told us he has no problem going to 6 month scans. We could not be more ready for this to happen for our son and our family.
 
Scans every 3 months is just so draining on all of us. Physically, mentally, emotionally, spiritually...you name it, it stresses us out to the max. Having almost 3 more months more is going to feel so good for all of us to have more "normalcy" time away from scans, the hospital, labs etc. So Roman will have scans at the end of May and in October next year. That will also leave us with more time for family things like a real vacation with Mike's off days... as is now all of his vacation time is spent on all of the scan days thru out the year. So going to 6 month scans is a good thing all around for the Fariello family.
 
I have already had a couple of people ask me if I am ready to go that long without a scan for Roman. Are we scared? Yes, we will ALWAYS be scared. We are cancer parents. That fear will NEVER leave us. Trust me when I say to you, that YES Mike and I are more than ready to take this HUGE leap with our son. I will always be scared but something is different inside of me. The best way to explain this to all of you is that I have had alot of time to really dig deep down with my own feelings about how blessed we are to have Roman with us. And the best way to truly appreciate having our son, is to REALLY LIVE for Roman and Sheridan and NOT live in fear. Now that doesn't mean that Mike and I have let our guard down...that will NEVER happen, once a cancer parent always a cancer parent. It just means that we have accepted God's will in that ROMAN is a SURVIVOR!!!!!!!!!!!! ROMAN is a MIRACLE and a BLESSING.
 
It took me a VERY long while to reach this personal milestone. I cannot speak for my husband but for me personally, I have not been able to breathe in a real long time. Almost felt smothered at times by scans and just the whole childhood cancer thing. I can certainly see why most cancer parents want to "disappear" back into their "normal" lives with their survivor child. After I got back from the NB conference, I was really upset that no survivors were there. Well, I GET IT now. I get that life does go on and that for us to bounce right back in is truly a GIFT. I know and reality is that Roman has a LONG way to go on his journey and we have no idea what the future brings for anyone of us. But today is a day that we as a family could not be happier with. A day that brings much strength, much faith and hope that our son is gonna make it. Our son is going to look at cancer straight on and say "CANCER FEARS ME"!!!  
 
Love and thanks to all of you for your prayers and messages. Our hearts could not be any fuller. Roman will know as soon as he is old enough to grasp just how amazing he is and how blessed he is by having all of you in his corner. God, we thank you for the gift of our son Roman. We thank you for giving us more family time to spend away from the hospital now and all of the stress that comes with that. And sweet ^^Corey^^, today we talked about you and cried over you as we celebrated Roman's milestone, knowing he is here because you are with him every step of the way. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello 
December 2, 2009
Hello to our family, friends and new friends!

Well, we certainly were not expecting Dr. Wagner to call us today...but he did...and he gave us our CHRISTMAS PRESENT EARLY...ROMAN IS NED!!!!!!!!!!!!!!! His MIBG Scan was all clear this morning. What amazing wonderful news for all of us. Roman did so well with getting stuck not once but twice this morning. He is so strong and so very brave. We do have our clinic visit tomorrow with Dr. Wagner.

Now, we can REALLY enjoy Christmas and the New Year without worrying about scans and waiting for results. THANK YOU GOD!!! Thank you Dr. Wagner for surprizing us with a phone call this afternoon, giving us the absolute best CHRISTMAS present that cancer parents could ever ask for. Dr. Wagner truly is such an amazing doc. He has the best bed side manner ever humanly possible. We love you Dr. Wagner! And Polly too!

OK, so Roman conquered another set of horrific, white knuckling, stressed out scans. Roman and our family could not have managed as well as we do if it weren't for all of you Roman supporters out there storming the gates for us. We do indeed know and realize all too well that our son is a walking miracle. Now, we can breathe again...at least for a while anyway. Thanks to all of you for your continued prayers and support for our son.

Please keep so many of our carepage and caringbridge families in your prayers at this time for scans, and the kids working on those angel wings. Also, please pray for the families who have already lost their children...they are missing their beautiful kids more than ever. Our hearts are with all of these parents constantly. The fear of losing Roman is completely off the charts for us, so please keep these families in your prayers.

God, please keep blessing our Roman as you have.  And THANK YOU sweet ^^Corey^^ for seeing all of us thru another set of scans. We know you have Roman's back always and you never leave his side. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello   

November 30, 2009
Hello to our family, friends and new friends!

Dr. Wagner just now called us and told us that Roman's CT Scan came back CLEAR!!!!!!!! THANK YOU GOD!!! One scan down, one more to go on Wednesday. I will update again on Thursday after we meet with Dr. Wagner for the MIBG Scan results.

The outpouring of prayers for our son thru emails, phone calls and carepage messages are what keeps us going. We read each and every single message from all of you. Roman is so blessed to have all of you storming the gates for him for his scans. It's such a stressful time for all of us during scan week. Knowing we literally have an army behind us if we need anything makes us feel so loved. There are no words for us to thank you from our hearts. I will update on Thursday with MIBG Scan results. Much love and many thanks to all of our supporters near and far. 

God, please keep blessing our Roman as you have. And to sweet ^^Corey^^, you were with us today even helping Roman with the IV, as we know you have Roman's back. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello 

November 29, 2009
Hello to our family, friends and new friends!
 
We sure hope everyone had a wonderful Thanksgiving making wonderful memories that will last forever. We certainly did:) Great food on Thursday with family. Being thankful that Roman was sitting at the table eating, talking, laughing and playing with his Sissy Sheridan and his cousin Ian. It does'nt get any better than that on Thanksgiving for us. Thank you God!
 
Getting up at 2:30am Friday morning to go shopping with my sisters Maureen and Coleen. Had an absolute blast and much needed sister bonding time together. I love you both and thank you both for making me laugh so very hard on Friday all day long. Then we put up Christmas decorations and of course the tree with the kids on Saturday. Today, spent the day at Aunt Coleenie's house with Aunt Sissy and Uncle Chet and all of the cousins to watch the Bengals WIN!!! 
 
And now, as I sit here typing this update, the fear inside of me is unbearable again thinking of what's coming in the morning for Roman and all week for that matter... scans. Talk about a fun mood killer, scans will do it everytime for the Fariello family and extended family and friends. Tomorrow, Roman will have a CT Scan of his head, chest, abdomen and pelvis at 10:00. I am going to demand results sometime tomorrow, because waiting until we see Dr. Wagner on Thursday for clinic is NOT an option. I will update as soon as I get results of the CT Scan. Roman is ready. I asked him what hand he wanted them to use for his IV and he told me the right one. He is so amazing to me. Thank God he is so laid back. He knows he has to sit still for the scan too. He's really been doing well with that the last couple CT Scans, so no worries there.
 
I ask all of you tonight to please add Roman to your prayers for scans to go accordingly and for clear results. As I have said many many many times....as soon as scan week is here, our household seems to be more hectic, more on edge and we don't get much sleep (Mike and I) because of stress and worry. It was such an amazing Thanksgiving weekend for us. We had alot of fun and now we are hit right in the face of childhood cancer reality all over again, again and again. It never ends for us.
 
Please pray for Roman as I know all of you will. Thanks so much for supporting us and our son as we head into scan week again. God Bless! Love to all of you! Jody, Mike, Sheridan and Roman Fariello 
November 22, 2009
Hello to our family, friends and new friends!

With Thanksgiving approaching on Thursday, the Fariello family sure has a ton of things to be VERY THANKFUL for. We have our son Roman with us. He is ALIVE and breathing and eating and growing like a weed! There is not a day that goes by where Mike and I do not look at each other at some point and smile when Roman does something silly or whatever. We both know how blessed we are to have him with us, and with Sheridan too.

Life has been good here at the Fariello household. But that doesn’t mean that stupid cancer is not at the forefront of our minds. Roman’s scans are next Monday (11/30) and Wednesday (12/2). As soon as Mike and I get dates of scans we get that horrific feeling in our guts all over again. It takes us into an immediate overload of FEAR. That feeling does sort of “disappear” after scans, but certainly comes flooding right back to us when we see those dates and know those times. If we didn’t allow those feelings to sort of “disappear”, we would not be able to function at all in the Fariello household. It is our way of life.

We have so many people in our lives to be thankful for this Thanksgiving. I wouldn’t know where to begin. But to our families and our friends, we could not keep on going as well as we have since April 25th, 2007…it is because of all of you that we are able to. All of you have made the road that much easier to travel down with Roman. There are no words to describe what Mike and I feel for each of you. We are truly blessed with the biggest security net possible. We love our families and our friends more than could ever be put into words.

This Thanksgiving, I know it may be a bit weird or strange or cheesy for some of you, but go around the table this year and be thankful for something or someone and say it out loud. Put into words what you are thankful for. And, while you are at it, tell the people in your life you love them. Thanksgiving usually is just a day to eat and get ready for shopping the next day, and trust me, that’s all it was for me prior to Roman’s cancer. Now, Thanksgiving takes on a whole new meaning in our lives and for our families. I know I speak for every single person who knows us and loves us, that Roman is a walking miracle. Each day with him is a blessing. And for that we are ever so grateful.

I will update on Monday after Roman’s CT scan…hopefully with a result that is music to our ears again.  God bless all of you and your families and friends this Thanksgiving. God, please keep blessing our Roman as you have. We thank you God for the gift of our amazing cancer warrior son and his equally amazing big sissy Sheridan. Love to all of you! Happy Thanksgiving! Jody, Mike, Sheridan and Roman Fariello        

November 10, 2009
Hello to our family, friends and new friends!

Well, Sheridan lost her first tooth on Nov. 4th and boy was she ever so excited! She started doing her own version of a happy dance right in the kitchen! I got it on video of course. She is growing up so fast. The tooth fairy came that night and left her $5.00 for her first tooth. She knows that the tooth fairy leaves more for the first tooth because it is very special.

Let’s see, the kids decorated x-mas cards for sweet Noah Biorkman cp:NoahScottBiorkman and Roman picked out a few little cool toys we sent to him in the mail for his special Christmas he had this past weekend with his family. Roman and Sheridan were of course asking me questions and they both wanted to know if Noah was going to go to heaven like ^^Corey^^ did. I told them yes. And then Roman immediately let me know that he himself is not sick anymore and that his medicine helped him get better. It amazes me how Roman at the young age of 4, is able to comprehend what is going on with things like this. We pray that the Biorkman family got to make beautiful memories with Noah this weekend that they will cherish always.

I wanted to also share with you a Stage 4 Neuroblastoma Survivor story of a family that I got to know thru a very close childhood friend of mine, Michelle (Mitch) Foster, love you! Thanks to her, I have come to know the Kinderman family. We have not met in person yet, but I know we will. Joshua Kinderman is a stage 4 NB survivor. I am telling you this because this is one amazing young man. Joshua is doing well now at the age of 19. He was diagnosed I believe around the age of 3. The extent of his disease at diagnosis was off the charts compared to Roman’s initial diagnosis. I have emailed back and forth with his mom Sharon sharing stories etc. I have told her that she has no idea what impact her son has had on our family. Seeing him do so well is such a blessing to us. It gives us hope in many ways.

Joshua has been very involved with Hoxworth. Has has had the chance to tell his story of survival many times. He is in every sense of the word a special spokesperson for Hoxworth. You might even see him on the side of a bus in the Cincinnati area. He is making a difference with wanting to tell everyone that donating blood and platelets saved his life and how YOU could save someone’s life too by donating.

The Kinderman family is very special to us. They have a walking miracle just like we do. Sharon has told me that to this day, Joshua’s birthdays are blessings and each one is a milestone. Please read the article on Joshua and the Kinderman family. We are so very proud of Joshua for wanting to get out there to make a difference being the true survivor he is. My hope is one day, we will meet and Roman will have a real live HERO to watch as he grows up with the same deadly disease. Seeing Joshua, Roman will know without a doubt that he too can make a difference and that anything is possible for him. Here is the link….please read…

http://issuu.com/cincinnati/docs/west-chester-our-town-102009/46

I have Roman’s scan dates to share with all of you. They are as follows:

 

Monday Nov.30 -            CAT Scan of head, chest, abdomen and pelvis

Tuesday Dec. 1-             MIBG Injection only

Wednesday Dec. 2-        MIBG SCAN probably with labs drawn

Thursday Dec. 3-            Possible 2nd MIBG scan if needed and Clinic Visit with Dr. Wagner for results

 I do not have exact times yet, but at least we have dates. I just want these to be done and over with so we can enjoy the holidays without stress and worry about scans. Again, I cannot stress to all of you how these scans affect our family and how it tests our strength, our hope and how it preys upon our worst fears about Roman. Please start praying now for Roman.

I will leave you with a link to see the some pics of Sheridan’s beautiful toothless smile and a couple of pics of Roman being goofy and silly...

http://picasaweb.google.com/jody.fariello/SherS1stMissingToothNov09?authkey=Gv1sRgCKmxxdmakfnaOA&feat=directlink

We thank all of you for your wonderful support that you give us continually. We thank you mostly for your prayers for our son that he remains NED always and forever. Love to all of you! Jody, Mike, Sheridan and Roman Fariello    

November 3, 2009
Hello to our family, friends and new friends!

It’s been so long since I have updated…I am quite sure I wanted it that way too because I have REALLY been enjoying “normalcy”. I have really been out of touch with my fellow carepage/caringbridge families and for that I do apologize. I have not wanted to read about the other kids lately. That is not like me at all. I am not sure why I have been feeling that way. I am chalking it up to just needing a break. I guess one can only take so much bad news about the kids I read about all the while trying to enjoy Roman being “normal”. It’s a very difficult thing to do.

We did have an awesome Halloween here. Roman was SpongeBob, Sheridan was a Pirate, Mike was Betty Rubble for work and Dracula on Halloween night and I was a black cat. The kids had fun going out and Sheridan lasted just about the whole time. Roman lasted a little over an hour and he had enough. I hope you all enjoy seeing the pics of us dressed up on Halloween night. Click link...

http://picasaweb.google.com/jody.fariello/HALLOWEEN09?authkey=Gv1sRgCOrM_sjIgImyKQ&feat=directlink

Roman’s scans are coming up again. I have no idea of exact dates and times yet…I hope they will let us know that soon. Oh how I wish we didn’t have to do these scans every 3 months. I am tired of doing them. I know that sounds way selfish but I am emotionally exhausted when scan time comes around. Our house gets turned upside down with fear. Everyone’s on edge during scan time.

Then I struggle with my feelings about our other fellow cancer families going thru pure &^%$ right now and I really have no right to feel the way I have been feeling. We still have Roman with us. He got to experience Halloween like a “normal” kid. So many other kids did not get to do that. They are sick with fevers and infections, transplants or even on their way to heaven working on those angel wings.

Roman truly is a walking miracle. That is why I have not been “involved” lately with the other families. I am having a hard time reading about the bad. I never used to have a problem with it, but now I am. Which brings me to Noah Scott Biorkman. I have been following this little guy for quite some time now. I know he is working on his angel wings every day. When I see an update from his Mom, I take a deep breath and my heart starts to race. I just cannot even fathom what his family is going thru. They will be celebrating an early Christmas this week because Noah made a deal with his Dad that he would “hang on” until Christmas. After I read those words, I had to re-read them again and again. My heart is very heavy for the Biorkman family.  Please, I ask all of you to pray hard for this family as they cling to every single detail of their last Christmas with their son.

As for how we are…Sheridan has joined Girl Scouts and is in a Daisy troop. She also has her first loose tooth! And Roman, he is doing so well, growing like a weed. I am so blessed to be able to be home with him and enjoy watching him grow up every day. He goes to the dentist next week for a fluoride treatment and check up. I will also let you know when scans are as soon as they let us know what is going on. Please continue to pray for us as well as all of our fellow carepage/caringbridge families. Childhood Cancer…I SIMPLY HATE IT!!!!! Love to all of you! Jody, Mike, Sheridan and Roman Fariello

October 17, 2009
Hello to our family, friends and new friends!

REMEMBERING…………….

Today marks the 2nd year anniversary of Roman getting his second chance at life…his bone marrow transplant was 2 years ago today. I cannot believe how much time has just gone right by us. Whenever I feel defeated or depressed or just down, I simply go directly to Roman’s transplant month, and I get my harsh dose of reality very quickly. That whole entire month was the absolute worst time in our family’s lives. We missed all four of us being together. I missed Mike more than ever. We literally were ships passing by each other. We both missed Sheridan on the nights we were with Roman and vice versa on the nights we were with Sheridan. We took turns nightly switching every other night with each kid. Never ever at one time were both of our kids not with one of us thru out that whole month. So, to this day, I have really no sympathy at all for parents who whine about not getting enough sleep for whatever reason…I feel like telling them “You have NO IDEA what it is like to not get sleep”.  So, with the help of Lauren “our angel”, Derney and Duppy, Aunt Coleenie, family and friends, we made it thru the longest month of our lives.

Roman was so very sick back then. I hope and pray to God every day that I never have to see my son like that ever again. He was just so sick from the transplant chemo. His skin was purple red and he was peeling all over his belly and his pelvic area. He was so huge from all of the fluids they were pumping into his tiny body. It didn’t even look like Roman. High blood pressures, constant bloody diarrhea, bloody mucous coming from his little mouth, puking, taking about 15 meds at one time, high fevers, no sleep for Roman and certainly not for Mike and I, changing diapers constantly, changing bedding constantly, changing clothes constantly. Just all of these images and things replay in my mind all the time. It reminds me of how far we have come with Roman and just how amazingly strong our son is. Most of all though, what a blessing it is to be celebrating a day like this today. We are so blessed to have TODAY!

I recall so many times having conversations with God about Roman while driving to the hospital or home from the hospital. Those were the times I cried my eyes out because no one else was around to see me that way. Begging God to keep him safe. Begging God to look after Sheridan and help comfort her when she needed it. I recall begging God to just split me into 2 so I could be at home with Sheridan and at the hospital with Roman at the same time. I also begged God to just let Roman live and let him grow into the fine young man I know he’d be. I begged God to let my son be “the one” to make it, to beat it…all the while knowing what horrific odds he faced.

There is not a day that goes by where Mike and I are not looking over our shoulder. It’s daily living for us. Here we are, 2 years out from transplant, and we still feel the exact same…we’re scared for Roman’s life but in a different way now. Back then it was making sure he pulled thru the transplant itself because a lot of kids don’t even make it thru the transplant process without a deadly complication unfortunately. But, Roman pulled thru. He made it. And now, Mike and I worry about it coming back invading Roman’s body all over again. We worry about all of the side effects from the treatment he already has had. As scan time nears again for Roman next month, we get sucked right back into our ongoing reality of living with a child who has a deadly cancer.

In honor of Roman’s 2nd chance at life for his anniversary, I would like for all of you to do something fun with your children today. Let them do something you wouldn’t normally allow them to do like eat ice cream for breakfast or whatever they want. Tell them you love them over and over again and that they are the single most important person in your life. Tell them they are the reason you get up in the morning and that you are extremely proud of them every single day. Let our story about Roman’s cancer be your reminder that family is what truly matters in life, nothing else even compares. Your children should matter more to you than anything in this world. Let our story remind all of you that your life as you know it, could be turned up side down in a split second…ours did. Don’t take anyone or anything for granted…ever!   

I do believe that Roman was chosen for his cancer role, just as Mike, Sheridan and I were chosen to be right by his side thru it all. Mike and I are ever so grateful for even being able to celebrate a day like today. Way too many parents are not blessed like we are to be given a gift like today, the gift of a second chance at life. Give plenty of hugs and kisses today to your kids, hold them tight and tell them you love them so much!…We love  you Roman and Sheridan more than it is humanly possible to love another!!! We are so proud of BOTH of you! You BOTH are so strong! You BOTH continue to amaze us each and every single day.  

HAPPY 2nd LIFE ANNIVERSARY ROMAN MICHAEL FARIELLO!!!

CANCER DOES FEAR YOU SON!!!!!!!!!!!!!

God, please keep blessing our Roman as you have.

Love and many thanks to all of you for supporting us and loving us and caring about us! Jody, Mike, Sheridan and Roman Fariello
October 12, 2009
Hello to our family, friends and new friends!

WOW!!! What a wonderful weekend we had!!!  On Saturday, I took the kids to Vogt Farm in Batesville Indiana. What a blast! It was so nice…they thought of everything for the kids, right down to a cool barrel made train pulled by 4 wheeler. It was so much fun. Muddy from all the rain, but so worth it for the kids. They played fun barn games, won prizes, ate great food, rode a pony, saw some farm animals, took a trolley ride pulled by horses to the pumpkin patch, did the corn maze and rode the barrel train. Just so much fun. We went with Aunt Coleenie and Kathleen, Becky and her daughters Hannah and Hopey, Kathleen Bertline and her daughter Haley, And Derney, Duppy and cousin Ian. What fun!

Then, after we got home, we got a wonderful phone call form “OUR ANGEL” Lauren…she came home with her husband for a visit. She wanted to come by and give Roman his birthday gift and she wanted to see the kids while she was here. When she got here, the kids were out riding their bikes…when Sheridan noticed someone pulling into the driveway, she didn’t realize it was Lauren until she saw her…as soon as she knew it was Laren, she threw her bike to the ground and took off running for Lauren. The kids were more than happy and excited to see her….and so was Mike and I. She brought Sheridan some SpongeBob 3d stickers and Roman some soldier guys with a helicopter. She also brought her most adorable doggy Jasmine. Roman and Sheridan went crazy over her. She is too cute! Lauren played with the kids the entire time she was here. I just cannot tell you in words how happy they were playing with Lauren. They love her so much! Lauren, we miss you and we love you! Thank you for making Roman’s birthday even more special by spending time with him and Sheridan. We love you Lauren!

Then yesterday we had a SpongeBob party for Roman with family, friends and his little buddies. Aunt Jenn made a wonderful SpongeBob cake and cupcakes. Thank you Aunt Jenn we love you! We call Aunt Jenn Martha Stewart Jr. because she is so creative with crafts and baking etc. The cake and cupcakes looked awesome!

I want to personally thank our wonderful photographer Mikki Schaffner. She was here to capture all of those moments for us yesterday that we could never catch the way she does…she is so very talented. Mikki we love you so much and cannot put into words how much you mean to us. How blessed we are to have your talent and your expertise in brining to life so many amazing pics of Roman and our family. It would not be right to celebrate Roman’s milestone 4th Birthday without having Mikki capture it for us. We love you Mikki!

It was a great weekend for us. We had a wonderful time. I have a link below to view pics from the farm, Lauren’s visit and Roman’s party. I hope you like the pics........they are really good!

http://picasaweb.google.com/jody.fariello/RomanSPartyVogtFarmLauren?authkey=Gv1sRgCP7FlbHHldLGGw&feat=directlink

Please keep praying for Samuel Anderson, Noah Scott Biorkman and Victor Villarreal. These families need miracles and abundant prayers for their children. I hate Neuroblastoma. God, please keep blessing our Roman as you have.

Love to all of you! Jody, Mike, Sheridan and Roman Fariello

October 8, 2009
Hello to our family, friends and new friends!

I first want to say a HUGE THANK YOU to all of you who sent Roman birthday cards in the mail, E-greeting cards, birthday email messages and carepage messages. They were all so sweet! He enjoyed seeing the graphics and pics too! He also enjoyed being serenaded a lot yesterday!

http://picasaweb.google.com/jody.fariello/RomanS4thBirthday?authkey=Gv1sRgCL-Itt7o5pu3-AE&feat=directlink

Roman had a wonderful day yesterday as you can tell from the pics in the link above. After we took Sheridan to school, Roman and I went to get him a new pair of gym shoes and then we came back and he helped me make his cake. He picked out a yellow cake with cherry icing. He enjoyed licking the bowl and spoon etc. There are pics of this in the link. Derney and Duppy surprised him with a Spongebob balloon later in the afternoon. They went with us to pick up Sheridan from school and had dinner with us. After dinner we sang Happy Birthday to Roman and he blew out his candles and we ate cake. For those of you who know us well, knows that I do not cook or bake…but I did bake Roman’s cake and got a stamp of approval from my husband Mike. He didn’t think I could handle it and I showed him didn't I…I love you honey!

Yesterday was a milestone not just for Roman, but for our daughter Sheridan too. We got Roman a new bike and helmet for his birthday. When Mike came home from work, Roman knew Daddy had his present and as soon as he saw it he wanted to ride it right away. At the same time, Sheridan wanted Mike to take off her training wheels on her bike. So, he did. And with all of us watching her, she started to get her balance driving around in our driveway. Then, she decided to ride up the street and away she went. She just took off riding her bike without training wheels. To tell you how emotional I was, I started balling like a baby watching her ride her bike. She is growing up so fast and that just hit me like a ton of bricks. I was already emotional with it being Roman’s 4th birthday anyway. Then seeing her do so well without raining wheels, I just cried. I’m such an emotional wreck…I get them from my Mom, she was just like that.

And, the fun does not stop there for the kids either…on Saturday, we are going to a farm in Indiana so the kids can play games, pet animals, face painting, pumpkins, hay rides, pony rides etc. We are going with Aunt Coleenie and KK and a group of friends. It will be a blast for all the kids. Then, on Sunday, the celebrating of Roman’s birthday continues on with a party for him with some of his little friends, their families and ours. Roman wants a SpongeBob cake so Aunt Jenn is baking him a SpongeBob cake. Thank you Aunt Jenn. He also wants to wear his Halloween costume for his party which is of course SpongeBob. So, SpongeBob all around! It will be a fun filled weekend.

While we are having a blast enjoying every little detail of life, some of our carepage/caringbridge families are not. Many of them have scans today and this week, some are sick, some are in treatment and some are unfortunately being called to heaven. My heart aches for these parents having to watch their child’s life end right before them. Please say a prayer for all of these families in need of prayers right now.

That’s it for now. God, please keep blessing our Roman as you have. Have a great weekend everyone! Love to all of you! Jody, Mike, Sheridan and Roman Fariello :)

October 7, 2009
Hello to our family, friends and new friends!

Today…is……. ROMAN’S BIRTHDAY!!!!!!!!   Our walking miracle is turning the big   4 today!!!!         HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Happy Birthday Roman Michael! WE love you Buddy! 

I cannot believe that he is 4 years old already. These first years have gone by so fast. When Roman was born, I wrote a letter to him in his baby book and told him that he was the final piece to our Fariello Family puzzle. He fit so perfectly. When I was pregnant with Roman, before we found out what we were having, I wanted another girl so badly. But, as we know all too well, God had other plans for us with having a beautiful son. I wouldn’t ever think having a son would impact me like Roman has, much less having a son that would have a deadly cancer. It’s been quite the parenting experience to say the least.

As I reflect on Roman’s birthday today, I take note of how many amazing lessons he has taught Mike and I, our families and friends and even strangers. So much has been accomplished because of him and his cancer journey. So many good things have happened to him and our family. Roman has touched so many lives in his own cute unique way.  4 years ago today when I was being induced, pushing, pushing and pushing only to be forced into having a c-section to protect him, I had no idea how that little life was going to affect so many other people’s lives. Change them. Remind them of what’s important on a daily basis. Keep them focused. Make them enjoy every minute of every day. And the list is endless.

On this special day of celebrating Roman’s life, turning 4 years old is another HUGE milestone reached for him. As I have spoken to another long term survivor’s mom (stage 4 NB) she told me “each and every birthday is a HUGE milestone for our family and still is” and he is currently 18 years old. I can only hope and pray that Roman gets to reach milestone after milestone after milestone and so on and so on and so on.

So, wish Roman a HAPPY 4th BIRTHDAY…as many of you know we are very blessed to have this beautiful day with Roman. Every day is a gift. So many parents do not have their children anymore to love on, kiss on and hug on and celebrate milestones like birthdays. We love you always Roman Michael! Sheridan, Mommy and Daddy love you so much!!! 

God, we thank you for this very special day for Roman. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

October 2, 2009
Hello to our family, friends and new friends!

On Wednesday, we made well over 2200 Gold Ribbons…I want to personally thank my secretary Kathleen Bertline, my mother in law Derney, Marsha Benjamin, Jennifer Hendren, Christina Whipple and ^^Corey’s^^ Grandma Nette. These ladies, when all of us get together, we really crank out the ribbons! It’s so awesome. We are definitely caught up from being bombarded with orders. We will be taking some much needed time off for the next 2 weeks. Come x-mas time and the holidays, we will be busy again because people want to put at least one gold ribbon inside their x-mas cards this year among other ideas with them. I will let everyone know when the next Ribbon Making Day will be.

Today is a rough day for me. It is my Mom’s birthday today. If she were with us still, she would have been 75 years old today. For those of you who do not know, my mom passed away the day after x-mas in 1993, almost 16 years ago. I was 23. She died of pancreatic cancer. I woke up way early this morning around 4:00am wiping a tear from my eye. Remembering her and wishing she were here with me today. I miss her more now than ever, especially that I am older. I think about everything she could have witnessed and been a part of with my life. She has missed out on so much.

I remember so much about my mom. She loved fall and x-mas was her favorite holiday. She was a big kid at heart. She loved people, definitely a people person. (That’s where I get it from). She was an amazing singer. When people had weddings, funerals or anything that needed a singer, they would call on Pat. And she would give you the shirt off of her back if you needed it. She was funny, oh she was so very funny. She loved playing bingo, cards and yahtzee. We could talk to our mom about anything and everything. Those of you who have known me or our family knows that our mom was everyone’s mom. She loved for you to call her that too.

The night before she died, she was at my brother’s house. She was deteriorating very quickly. My brother had to call hospice and have the ambulance come and take her that night from his house. The EMT’s arrived to take her. She even joked right then with them about her weight and dropping her on the floor. After they got her ready to go, she was in my brother’s hallway and we all got to say goodbye. My turn came, and I put my right cheek and head down on her belly, she was touching the back of my head. I told her “I love you Mom” and she replied “I love you Jody Sue”. Those would be the last words I ever heard from my mom. And what beautiful words they are. She died the next day on December 26.

I know my mom is with me every single day. What I wouldn’t give for her to hug me right now and tell me everything was going to be ok with Roman and his future. I know that she would be the voice of strength I need sometimes when I’m not feeling strong at all. I know that she would be very proud of me. I know that she would of course be a very proud grandma. I know that she would’ve been right by my side for my wedding day, the birth of Sheridan, the birth of Roman, Mike’s new job and us moving, and Roman’s cancer. She would’ve never left my side throughout each chemo treatment, hospital stay, clinic visit or scan etc. for Roman. I know she would’ve been so heavily involved with our Gold Ribbon mission for awareness. She would be right by side at every single ribbon making day.        

Today, in honor of my mom’s 75th birthday, please call your own moms, those of you who are still blessed with your moms and tell them you love them! Tell them today how much they mean to you. My mom always told me growing up, “you only have one mom” and oh how I miss her.

Mom, I love you so much and miss you more than ever! Happy Birthday Bingo Queen!

Thanks to all of you for allowing me to remember my mom and share her with you on her birthday. Please keep Noah Scott Biorkman and Victor Villarreal in your prayers. God, please keep blessing our Roman as you have. Have a great weekend everyone!  Love to all of you! Jody, Mike, Sheridan and Roman Fariello  

September 28, 2009
Hello to our family, friends and new friends!

Well, Roman was a “normal” kid today getting his shots with NORMAL tears. He got the second HIB and DTP. One shot in each arm. He sat on Derney’s lap and held each one of our hands. When the shot went in the first arm he let out a huge cry with tears and quickly the nurse gave him the other shot and he let out another loud cry…as soon as it was taken out of his arm, he stopped crying. He’s been fine ever since. He is such a strong little guy. Nurse “Mimi” did an amazing job with Roman giving his shots quickly too him. We thank you for treating Roman so great today and for giving him 2 gold coins to get tiny toys from the machine. Roman is not due back again for another 10 months for his next round of shots.

When we got home Derney was making lunch and I made Roman some cheese and crackers. As he was eating them, he turned to me and said “Mommy, did you have cancer when you were a kid”……..my heart sank right to the floor and I quickly answered him

“No Rome, mommy did not have cancer when I was a kid”…”Only some kids get cancer, and unfortunately you were one of them”…I then added quickly…”You are doing real fine now though Rome”. It amazes me how Roman processes things and it makes me wonder where that came from and why did he feel he had to ask me that, what is going on in that very young mind…

Derney was taken off guard by the question and started to tear up. I am taken off guard with A LOT of what comes out of Roman’s mouth. He has had to grow up already unlike no other kid, not “normal”. It’s definitely NOT normal when your almost 4 year old son looks right at you and asks that question…what’s even more NOT NORMAL is that how smoothly it rolled out of his mouth and off of his tongue. The word CANCER should not even be in his vocabulary, much less wondering about if I, his mommy, had it when I was his age.

UNBELIEVABLE!!!!! Roman is a blessing and NEVER stops amazing me. The fact that he is thinking about things to that extent just floors me. His mind is way older than an almost 4 year olds.

So, it was an eventful day with another milestone for Roman… he is wearing UNDERWEAR finally!!!!! We are going on 4 days in a row. So, another welcomed milestone for Roman going to the potty all day long. Roman’s 4th Birthday is coming up on October 7th. I cannot believe he is going to be 4!!! I pray every single day that we have MANY MANY birthdays to celebrate Roman’s life way up into the 100’s!!!

Don’t forget we are having a RIBBON MAKING DAY on Wednesday at 11:00. Please come if you have the time to help, we need your hands always.

That’s it for now. God, we thank you for getting Roman to where he is in reaching his milestones. For we know every single day is a blessing! God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)  

September 27, 2009
Hello to our family, friends and new friends!
I cannot believe it's been a while since I have updated last. Time is going by so very fast every day. Busy with school stuff for Sheridan, helping with homework, and just every day "normal" life.
 
Yesterday, was cousin Ian's 3rd birthday so we celebrated at Aunt Jenn and Uncle Andy's house with a Pirate theme. The kids had a blast runnning around and Aunt Jenn had everything so nice for everyone. And they had yummy Skyline catered in for everyone. Roman and Sheridan love Skyline Chili. For my supporters out of our area, Skyline is a Cincinnati Chili thing only, no where else. We had a great time at Ian's party.
 
Tomorrow Roman gest his second round of shots. It's the same shots as the last time around. He knows we have to go tomorrow and he is already dreading it. I told him he would be fine. Mom (Derney) is going with us too to help me hold Roman's legs this time. Last time I went by myself thinking he would do ok because he does so well with IV placement in the back of his hands every 3 months, I had no idea that getting shots in his thighs would be so over whelming to him. It's so hard to think of him as just being a "normal" kid getting shots...I have to remind myself that he is only almost 4 and not older. Since he's been thru so much already, I feel he should be able to handle these little ol' shots, but he is NORMAL being scared of getting shots:) And we will take NORMAL in whatever form it comes in because we know with these shots just like last time, it is a blessing that Roman is where he is. So, I will let all of you know how he does tomorrow with getting 3 shots.
 
I also wanted to let everyone know that we will be having a RIBBON MAKING DAY on Wednesday from 11:00 until 3:00 or so. If you are able and willing to help, we need your hands. We are almost completely caught up on all the website orders. If you need directions or have any questions, email me at Shivers@insightbb.com  Thank you in advance for helping us spread awareness.
 
Which brings me to my next point....I am so disappointed, aggrevated and let down by our local media. I have sent numerous emails to all of our local stations about coming to a Ribbon Making Day so they can witness a community effort to raise CHILDHOOD CANCER AWRENESS firsthand. And for the this month being Childhood Cancer Awareness Month, you'd think they would want to do a GOOD story for a change. Not a story on murders, rapes, fires, child abuse, deaths, the economy etc....but I guess doing a story on Childhood Cancer Awareness doesn't mean that much to them and to the general public...well, allow me do my own NEWS STORY......
 
I have the most wonderful team of ribbons makers who devote their precious time for Childhood Cancer Awareness. On most Sundays, and some Wednesdays, I have people like my mother in law, Aunt Coleenie, Aunt Jenn, Uncle Steve, Kathleen and Ken Bertline, Stacey Murphy, Marsha and Dave Benjamin, Jennifer Hendren, Deb and David Powell and Sharon Shultz. These are the people who every week, are here to help... without hesitation, without wanting something in return, without thinking about themsleves. These are the people who deserve the NEWS STORY. I want these people, and of course there are so many other amazing people who give their time to help, but these are the people who deserve what I will call the TOP NEWS STORY!
 
PIN ON THE GOLD has definitely made a HUGE IMPACT for CHILDHOOD CANCER AWARENESS. Pin On The Gold is not about me. It's not about Roman. It's about a community coming together to do something they feel is important and needs more attention. Roman, ^^Corey^^ and so many other beautiful kids have touched the lives of so many people. PIN ON THE GOLD is a result of that. 
 
I want these people and all of the other amazing people who's hands have helped us along the way to be VERY PROUD. Many many many long hours of unselfish time has helped put PIN ON THE GOLD on the map. Across the country and in other countries as well. I want the ribbon makers to know that Mike and I are extremely PROUD to be in their company and to have them in our home. I want them to know that their work has made TOP NEWS!
 
Since June (4 months ago) PIN ON THE GOLD has sent out over 47,000 Gold Ribbons across the country to raise awareness for our children who the media slights.  That is an AMAZING accomplishment!!! That's 47,000 people who got educated on the GOLD RIBBON and what it stands for. I want to take this time to THANK everyone and anyone who has helped and continues to help Pin On The Gold. Your hands helped Childhood Cancer Awareness get out there. Without your hands, your financial support and your time, we could not have done this for the children. Mike and I want all of you to know we do not need a news story to tell you we truly are blessed by all of you.
 
And our kids Roman and Sheridan, are always asking if we are having RIBBON DAYS on the weekends now. They love it and miss it when we do not have them. It's such a great thing for them to witness and be a part of and grow up with.
 
That's it for now. Thanks again for letting me give KUDOS to the Ribbon Makers of PIN ON THE GOLD. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello 
September 17, 2009
Hello to our family, friends and new friends!

Yesterday, we made 1,970 Gold Ribbons!!! How awesome! I want to thank my monther in law Derney, ^^Corey's^^ Grandma Nette, Kathleen Bertline, Stacey Murphy and Jennifer Hendren. Even though we had a small group, we turned out almost 2000 ribbons. We were cranking them out. We are almost completely caught up from all of the orders we were bombarded with on the website. It's a great feeling to know we are getting caught up. Thanks so much to these amazing ladies who give their time helping us. I love all of you! We could not do what we are doing without their help and their hands.

Speaking about ribbons..........we are having another RIBBON MAKING DAY this coming Sunday from 1:00 until 5:00. So, this is the time to help us if you have never helped before. We need your hands and your help. We still have orders coming in. If you are able to come and help out, you can stay as long as you want to, you do not have to stay the enitre time. If you have any questions or need directions, email me at Shivers@insightbb.com. All of us at PIN ON THE GOLD thank you for your help.

I want everyone to know that just because CHILDHOOD CANCER AWARENESS DAY is over doesn't mean you stop wearing that GOLD RIBBON. It is still CHILDHOOD CANCER AWARENESS MONTH this month. Show your support for all of these amazing and wonderful children. And, even after this month is done and over with, STILL WEAR YOUR GOLD RIBBON!!! We want CHILDHOOD CANCER AWARENESS every single day of the year for these children! So please show your support 365 days a year.

Please keep all of our carepage and caringbridge families in your prayers. I have so many that need prayers right now, I cannot list them all. Some are in transplant, some are in antibody treatment, some are having scans, some have the flu, some are battling infections and high fevers and unfortunately some are at home with their families waiting to go to heaven. My heart is heavy for all of these families because we are blessed with Roman being "healthy", strong, growing, eating, sleeping, playing, running, learning to go potty, riding his bike, playing games on the computer, talking about what he wants to be for Halloween etc.  All of the things that a "normal" kids should be doing.

I know these families right now are not experiencing what we are blessed to be experiencing. Each and EVERY single day is a gift with Roman. Life is so priceless and so precious. Don't take it for granted ever! If I can reach one of you with my "rants" than I am doing what I am supposed to do with our journey. Slow down, take inventory of your lives, and change what needs to be changed for the better. Remember that life is not always about you and your stuff. Life is so much bigger than you and your stuff.  Trust me...these families are not worrying about their "stuff" right now.

Also, please say a prayer for all of the cancer parents who are missing their children in heaven each and every day. These parents could tell you even more about not taking anything for ganted ever and to cherish each and every moment.

OK, I am done "ranting" now.

Hope to see some of you on Sunday! Love and thanks to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello

September 15, 2009
Hello to our family, friends and new friends!

On Saturday, for National Childhood Cancer Awareness Day, we took the kids along with Derney and Duppy to the Zoo for Survivors Day. It was a beautiful day out for it too! The kids had fun with face painting, free goodie bags and other fun stuff, and of course looking at the insects at the insect house! YUCK! They also went in the reptile house, nocturnal house and saw some gorillas and monkeys and other animals. It was a great day with HUGE MEANING for our family. Roman was being recognized as a survivor along with so many other kids who are or have been treated at Cincinnati Children's Hospital. The hospital along with amazing organizations like A Kid Again and Cancer Free Kids and the Kelly Carrol Foundation among others were there for all of our children. These organizations are amazing in the work they do for children with cancer and their families. It was a fun time had by all.

After we left there, we came home and did a balloon release. We picked 2 GOLD  and 1 RED balloon to release. One of the gold balloons was for Roman. The other GOLD balloon was for all of our fellow cancer warriors and angels in heaven. The RED balloon was for sweet ^^Corey^^. His favorite color was red so we wanted to recognize him in a special way on Childhood Cancer Awareness Day. Roman held his balloon and Corey's together. Sheridan held the other Gold balloon. On the count of 3, the kids released their balloons. It was so beautiful out as they disappeared into the sky.

Here are pics of Survivor's Day at the Zoo and of our balloon release... click on link below

http://picasaweb.google.com/jody.fariello/ChildhoodCancerAwarenessDay2009?authkey=Gv1sRgCPTShN7snOvcfg&feat=directlink  

I wanted to let everyone know we are having a RIBBON MAKING DAY tomorrow from 10:00am until 3:00pm. Come when you can and stay as long as you like. We need to fill many orders still and we NEED some helping hands!!! If you have any questions or need directions email me at shivers@insightbb.com

Please remember to pray for Noah and Victor. These 2 families are in the worst way with their boys. Our worst fear is becoming their reality. Please pray for Garrett who is in the transplant process right now. Also a couple of our other warriors are getting the flu right now. Please keep them in your prayers that they can fight off this flu. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)  

September 12, 2009
Hello to our family, friends and new friends!

Today is September 12…it is NATIONAL CHILDHOOD CANCER AWARENESS DAY….what does that mean for you Roman supporters…..what I hope it means is that if you have them, wear your GOLD RIBBONS proudly. It means that if you are a Roman supporter, your life has been touched by Childhood Cancer. You can no longer turn your head and quietly think to yourself “that poor family”. You can no longer think OH MY GOD, not Mike and Jody Fariello, not their baby boy.

It means that if anyone asks about the GOLD RIBBON and what it stands for…you tell them it stands for all the children in this country who fight for their lives each and every day. You tell them about all the beautiful children who have already lost their precious young lives to Childhood Cancer. You tell them that the GOLD RIBBON represents CHILDHOOD CANCER.

You tell them that 46 kids each and every school day get diagnosed with a deadly Childhood Cancer. There are no known causes. NO known Cures. Not enough ADEQUATE FUNDING for the children fighting for their lives everyday.

You tell them you know a family who lives every single day as if it were our last. You tell them that you know a family who lives their lives 3 months at a time. A 3 month rollercoaster ride that we white knuckle the whole entire ride. You tell them that you know a family whose son is so very brave and so very strong at the ripe old age of about 4. You tell them you know a family who is determined to make difference. You tell them you know a family who wants the whole world to know about Childhood Cancer. You tell them you know a family who has walked in the absolute worst pair of ugly shoes there could possibly be.

You tell them you know a family whose son has taught them more about life than they could possibly imagine ever. You tell them you know a family who was strong before childhood cancer, but after childhood cancer gives new meaning to the word strong. You tell them you know a family lives in constant fear, non stop 24/7…but you tell them this family does NOT let FEAR take over their daily living. You tell them you know a family who has so much love in their household it just seeps out all over. You tell them you know a family whose complete outlook on life changed in a matter of seconds hearing “your son has a deadly cancer called Neuroblastoma”. You tell them you know, love and support CANCER WARRIOR ROMAN FARIELLO… and if you need more reasons to wear your GOLD RIBBONS today…here are some more for you…….I only did NB kids to let everyone see that this is NOT A RARE CANCER!!!!!!! It’s only “RARE” because they say it is…all of us parents strongly DISAGREE from all of the names below…..

NEUROBLASTOMA ANGEL FRIENDS IN HEAVEN

Corey Nickell- we love you and miss you so much sweet Corey!

Caroline Carter

Victoria Love Houston

Jessica Rose

John Eric Bartels

Eliza S

Kody Edwards

Cooper Riley Proscia

Grace Oughton

Marissa Monroe

Harley Thornton

Arden Bucher

Trooper Dante

Jay Jay LeBoeuf

Chloe Parker

Ashlyn Whipple

Cody Lee

Maggie Achuff

Hayden Wion

Keagen Koch

20 ANGELS that I followed and still follow from EVIL NEUROBLASTOMA! I am sure there are way too many more out there....

NEUROBLASTOMA  DAILY FIGHTING WARRIORS

Roman Fariello                      

Joe Melville                 

Shannon Crowley           

Samuel Anderson            

Austin Freeman                           

Bradley Jude                  

Destiny Ross                  

Justin Miller                   

Aurora Leigh Morin

Nicholas Defelice

Zebbie Dodge

Toby Benton

Nathan Ormsby

Eli Horn

Nolan Kenter

Laura Van DerBos

Trey Love

Nathan Couch

Serena Lambert

Daniel Depatie

Davis Weisner

Sam Farris

Victor Villarreal

Kiara Fox

Austin Taylor

Andy Dunn

Drew Perschon

Noah Costa

Noah Scott Biorkman

Madison Bailey

Alyssa Ramos

Chloe Hightower

Addison Whipple

Trey Atkins

Kieran Hathaway

Kevin Gross-long term survivor

Sebastian-long term survivor

Josh Kinderman-long term survivor

38 WARRIORS I still follow everyday with hope!!!

We took Roman to the Zoo today for SURVIVOR’S DAY…how fitting for him!!! Pics to come later. We love you Roman Michael! God Bless! Jody, Mike, Sheridan and Roman Fariello

September 11, 2009
Hello to our family, friends and new friends!

What an absolutely AMAZING day we had yesterday at the ribbon cutting ceremony in Covington with the bio LOGIC team, our Governor Steve Beshear, his staffers and many many guests. It was so warm and humid out, but it was time well spent in the hot sun!

To watch the interview I did with channel 9 news Shannon Kettler, click on the link below. It will take you to their homepage and you will see Roman’s face in the video to the right then click on the arrow to play.

http://www.wcpo.com/default.aspx?articleID=38263

To see pics from yesterday’s event, click on link below:

http://picasaweb.google.com/jody.fariello/RibbonCuttingGovernorBeshearSept09?authkey=Gv1sRgCICKm4nZ2PPCUw&feat=directlink

I want to thank some amazing people from yesterday’s event…Emily Deckleman none of this would have been possible if you and your team did not do the SAVING ROMAN video, we have enormous gratitude to you for what you have done to help us with Childhood Cancer Awareness and Roman’s story. We love ya!

Margaret van Gilse from the bio LOGIC team, THANK YOU so much for welcoming our family with open arms and your willingness to help us with Childhood Cancer Awareness. You are so very sweet and kind and we could not be more grateful to you and your team for allowing us to be a part of yesterday’s big event. And a huge THANK YOU to your graphics guy for making our Pin On The Gold poster board, it is awesome!!!

A special ThankYou to Sheri Uber, with Cincinnati Children’s Hospital and the bio LOGIC team, for taking such wonderful care of our family making sure we were taken care of with whatever we needed yesterday from pics to drinking water to food etc. Thank You so much!

And finally, last but definitely not least…we want to personally THANK with the deepest appreciation, our GOVERNOR for the state of Kentucky, Steve Beshear. It was so nice meeting the Governor and he was so amazing with the kids. He was more than WILLING to WEAR A GOLD RIBBON FOR CHILDHOOD CANCER AWARENESS MONTH and for Roman. When Mike and I saw the Governor walk in yesterday, he was already supporting a GOLD RIBBON that we made. It felt so great to see him wearing the GOLD for the kids. He didn’t even have to speak to me, all I needed was to see him wear that GOLD RIBBON!!!!! It’s not everyday that you get to meet the Governor of your state, and ours could not be any nicer or more down to earth than Governor Beshear. Governor, we cannot thank you enough for your prayers for following Roman’s journey…and we know you do that thru your staffer Paul…Paul we thank you for following Roman’s journey and for your prayers. It means so much to our family. Thanks so much for thinking about us for yesterday’s ribbon cutting. It’s nice to know that we are thought about that much with our son’s journey. 

So, it was an awesome day filled with excitement! And, the best news is that PIN ON THE GOLD will hopefully be getting a news story here real soon in this month to bring awareness thru the Gold Ribbon at a Ribbon Making Day. Also, Margaret with the bio LOGIC team is going to get in touch with me soon to see how they can help us more with PIN ON THE GOLD. We welcome help from her with open arms.

I am hoping with the PIN ON THE GOLD new story, I will be able to talk more about childhood cancer awareness and stats. I was more than ready to talk on camera yesterday, I was hoping someone would interview us from the news media. So I am grateful for that opportunity yesterday to be able to speak a bit.

We are having a RIBBON MAKING DAY on Sunday from 1:00 until 5:00.  We need A LOT of hands to help us as we are still about 8,000 ribbons behind. We are getting the orders out to everyone slowly but surely. So, if you are willing and able, please PLEASE come on Sunday to help us make ribbons. We need YOUR hands! Any questions or need directions, email me at shivers@insightbb.com

Yesterday, was not all good news…please pray for Trey Love cp:TheChemoKid, he was in the “Saving Roman” video with Roman. He is in the PICU with a very serious life threatening infection. Please pray for him to beat this infection and abundant prayers for his parents. We are thinking and praying hard for all of you! Also, please keep sweet Garrett cp:PancakesForDinner in your prayers as he is in transplant right now and continue praying for sweet Noah cp:NoahScottBiorkman.

God, please be with the families today who lost their loved ones on September 11, 2001. Please give our country enormous strength with today’s anniversary. We thank you so much for yesterday for giving us so many amazing opportunities to spread awareness for so many kids. Thank you for putting us in the right place at the right time. Thank you for constantly sending us amazing people into our lives. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

September 7, 2009
Hello to our family, friends and new friends!

We hope everyone is enjoying the holiday. I cannot believe that the end of summer is here already and fall is next in line. I am ready though. I love the fall.

Saturday, we took the kids to see and ride Thomas The Train in Lebanon, Oh. We went with Derney, Duppy, Aunt Jenn, Uncle Andy and cousin Ian. It was fun for the kids to ride on a real train. They got tattoos and got to play with legos and train tables for a bit. Then we went out to eat together. It was great fun spending time with the family and the kids. Then, when we got home, we rented a couple of movies for the kids and Mike and I as well.

Enjoy the pics from our train ride…click on link below….

http://picasaweb.google.com/jody.fariello/ThomasTheTrainSept09?authkey=Gv1sRgCKP99pyel4K4aw&feat=directlink

Yesterday, we went to the library to get Sheridan some reading books for school. She has to read a story to us each night and Roman picked out a couple of books too. Then, we went to the mall. It has been a fun and busy “normal” weekend for us.

We do have some wonderful and exciting news to share with everyone……

This coming Thursday on September 10, Mike and I and the kids are invited to a ribbon cutting ceremony in Covington KY…it is for a company who’s headquarters are in Covington. They are a biotech company. They discovered us thru the “Saving Roman” video and Emily Deckelman and her team who shot the video in our home. This company will be doing cancer research at this new facility in Covington. The best thing about this event is……………we will be meeting Governor Steve Beshear!!! We will also have lunch with him at a reception afterwards. He and his staffers initially saw Roman and our family in the “SAVING ROMAN” video about Neuroblastoma at the BIO Convention that was held in Atlanta this past May. The Governor and his team have known about Roman for a few months now. It’s exciting for us to be meeting the Governor and his staffers for the state of KY! I have to say I am a bit nervous, but ready for everyone to meet our family at this ceremony and let them see that Childhood Cancer rears it’s ugly head on normal everyday families like ours. Anytime we can share Roman’s story with people in general, we want to do it. That in itself is generating awareness.     

We met with two of this company’s team members Saturday here at our home. They were extremely nice and so willing to help get Childhood Cancer some attention. The other best part of this is the timing of it all, with it being National Childhood Cancer Awareness month and Childhood Cancer Awareness day coming this Saturday. So, they are going to make everyone well aware of this extremely important day and month for our children with cancer.

PIN ON THE GOLD is DEFINITELY going to be getting some much deserved attention too. They are making us a huge poster board with our name on it with our GOLD RIBBON symbol for everyone at the ribbon cutting to see. And, of course, all 200 or more guests will be wearing a PIN ON THE GOLD gold ribbon for Childhood Cancer Awareness. It will be great to see all that GOLD on about 200 or more people, including the Governor!

So, great and exciting things happening for the Fariello family this coming Thursday and for PIN ON THE GOLD. To finally be getting some ATTENTION for all the children is an awesome thing. I am hoping the media outlets will be there covering this ribbon cutting ceremony since, well, it is the Governor of course. You can bet I will be taking pics of the day’s events to share.

Speaking of ribbons…we will be having a Ribbon Making Day here on Wednesday from 10:00 til 3:00…so if you can come, even for an hour or more we need your hands and your help…. We still need to make about 10,000 ribbons to catch up on all of the orders coming in. So, if you have any questions or need directions, email me at shivers@insightbb.com I have a feeling we will be getting alot busier...

Please wear your GOLD RIBBONS for Roman and all of the childhood cancer warriors and angels. Tell them WHY you are wearing it and how Childhood Cancer has touched your life. It is so important that we get the awareness out there about CHILDHOOD CANCER and how it completely changes so many lives forever. It has definitely changed ours! God, please keep blessing our Roman as you have. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello:)     

August 31, 2009
Hello to our family, friends and new friends!

Yesterday, we had a another successful Ribbon Making Day....we made 2000 Gold Ribbons!!!! THANKS to everyone who came and helped us get that much closer to getting caught up for September's ribbon orders for events etc. We will be having another Ribbon Making Day this Wednesday from 10:00 am until 3:00 pm. So, if you are able to come and want to help, we still need your hands!!!!! Any questions or need directions email me at Shivers@insightbb.com.

There are a few of our carepage/caringbridge friends who are need in of prayers right now…

Noah Biorkman cp:NoahScottBiorkman just went to what is most likely his last baseball game over the weekend. He got 2 of his wishes granted. My heart aches as I read their updates, because I know they are preparing themselves for the worst day of their lives. Noah's life is being stolen away because of EVIL NEUROBLASTOMA!!! I hate this disease. Please pray for him and his family.

Please also pray Sam Bish, he has a caringbridge site. Newly diagnosed with Osteosarcoma. He is 8 years old. It is in his knee and in both lungs. Please pray for his family for strength and endurance as we know they have a long journey ahead of them.

And, some of our neuroblastoma friends are having scans this week and next week...Andy Dunn, Destiny Ross, Kiara Fox and I know I am probably forgetting someone else. Way too many kids and families going thru these scary scans. To my fellow cancer moms Dot, Regina and Kim...we are thinking about all of you as you start your week with worry, stress, and scanxiety. Please know all of us are praying real hard for clear scans and those 3 letters...NED for Andy, Destiny and Kiara!!! Since we just finished scans, we know how exhausting it is for these parents. So, please pray for all of our fellow caringbridge/carepage families at this time.

PLEASE EVERYONE remember to wear to your GOLD RIBBONS for the month of September and everyday to show our support for what these kids go thru and to recognize that KIDS GET CANCER TOO. Show your support for all of the angels already in heaven and the warriors who are still fighting for their lives every day. Roman and so many other kids thank you for your support!!!  Visit www.PinOnTheGold.org

God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

August 27, 2009
Hello to our family, friends and new friends!

Here are 3 pics from yesterday's IV placement for Roman's MIBG Scan (click link below). Notice Roman's bottom lip(we call it 'the moose'). Roman was not thrilled getting stuck for his IV, but he managed just fine.

http://picasaweb.google.com/jody.fariello/MIBGSCANAUGUST09?authkey=Gv1sRgCNGGueq54bDIpgE&feat=directlink

Today, we had our clinic visit with Dr. Wagner and Polly. Roman's labs have never looked better. He did go pee in a cup for Daddy while we were there today, so no results on that yet, and I am sure it is fine too. Dr. Wagner told us we have about another year of Roman being followed every 3 months for scans. He looked at Roman from head to toe and we talked about the back pain. Roman has not complained about any pain for about 5 days now. That being said, Dr. Wagner was a bit concerned about Roman's back pain because it was localized in one area. But he told us since we were obviously going in the right direction with no complaints for about 5 days, to let him know if it starts up again. If it does, we will do either a PET Scan or a Bone Scan and make sure absolutely nothing is going on. He feels very confident with Roman's CT Scan and MIBG Scan results that nothing was found because he could see all the bones in the spine and all was normal . Also with Roman's lab results looking so great and everything being well within normal ranges. So, maybe Roman hurt himself or fell onto or into something and we didn't know about it. Dr. Wagner assured us it was not from his immunizations and it was not from radiation either. So, we just don't know what caused his back pain. We will definitely be keeping a close eye on things as we always do anyway.

I also wanted to let everyone know that we entered into a study at the hospital. It is not your typical study either. It is amazing what they want to do...and with what I learned at the NB conference, this was one of my questions that I had for Dr. Wagner..."how come there is nothing being done as far as research on kids like Roman who are NED and done with protocol, I am thinking maybe just maybe their bodies hold the key to why they are fighting off the cancer or keeping it at bay"....Well, this study will help with that and so much other research that needs to be done. Since Roman is done with protocol, this study is more like having a "bank" of blood samples, inside cheek tissue samples, spinal fluid samples, urine samples, and bone marrow samples and tumor samples. If any of these apply to Roman, they will take whatever is left over for their "bank" for research. Like if Roman gets a blood draw and a urine sample, they will use what they need to use and the rest of the blood and urine will go directly to the "bank" for research.

I feel this is a great way to give back. If we can help just one family from Roman's cancer, and help the research lab at the same time, then Roman's cancer has more meaning to it other than scaring the you know what out of us. I honestly feel that the kids who are NED hold the key to a cure. It's something in their bodies that has kicked in or started to work correctly or something. I hope Roman's samples help the lab in more than one way. I feel good about this research and it is so needed to just compare tissues, cells etc. Like a healthy kid's blood sample to a kid's blood sample who just got diagnosed. A kid who is stage 3 to a kid who is stage 4. And just so many other different ways they need research for NB and so many other diseases.  Mike and I signed the paperwork immediately. It will be great to see what comes of their research.

Roman also got a gift in the mail yesterday. He got the most adorable duck. No ordinary duck either. It is called Chemo Duck from a program called Gabe's Chemo Duck  www.chemoduck.org  An amazing organization who help kids overcome their fears with central lines etc. The duck has a line and a blood pressure cuff and it is adorable. Roman loved it. He took it to the hospital today. Chemo Duck even came with a matching do rag for Roman's head:) I will take pics later and share them with you. THANK YOU to our SECRET SENDER of the Chemo Duck. I have an idea of who sent it, but, you never know:)  You know whoever sent it, put the biggest smile on Roman's face yesterday!!!! We Thank You!!!

Having Ribbon Making Day this coming Sunday from 12:00 noon until 4:00. We have dinner plans after making ribbons. We still need to make about 4000 more ribbons to fill the orders we need for September's events. So, that being said...CALLING ALL RIBBON MAKERS....WE NEED YOU AND YOUR HANDS!!!!!!!!! PLEASE help us get these orders out for Childhood Cancer

Awareness Month next month. It's coming fast. If you need directions or have any questions, email me at Shivers@insightbb.com. THANKS SO MUCH IN ADVANCE!!!!!!

I also wanted to thank all of you for all of your phone calls, emails, carepage messages, gifts etc. Most of all your prayers. We do know every single day we have with Roman is a blessing. One we do not take lightly at all. Your support overwhelmed us this time with scans. And we so needed that support from all of you. Those of you who are closest to us feel our fears like no other. Our fellow cancer parents feel that fear as if it were their own and reliving that fear over and over again. Please know our hearts are full and we are so relieved that we have a green light for another wonderful 3 months with Roman and our family. We could not have managed without all of your love and prayers this time. We truly are blessed and we thank you! God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) 

August 26, 2009
Hello to our family, friends and new friends! 

MIBG IS CLEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! THANK YOU GOD!!! THANK YOU SWEET ^^COREY^^!!! We can FINALLY breathe tonight!!! Dr. Wagner just called us and told us the wonderful news. We are elated and maybe we can sleep some tonight finally. We have to be at clinic at 10:00 in the morning to meet with Dr. Wagner. We will also get lab results and Roman will pee in a cup. I have ALOT of questions for Dr. Wagner about Roman's possible back pain causes, and other things on our minds. I will update tomorrow afternoon about our visit.

I want to thank Kathleen Bertline for staying with us today at the hospital and keeping us company while we waited for Roman's scan. I also wanted to thank Marsha Benjamin and Stephanie Tomlinson for helping us with Sheridan during scans this week, getting her to and from school. We could not manage without the support from our "army". Mike and I love you guys and we appreciate your help knowing Sheridan was taken care of so we can concentrate on Roman. Thanks to both of you so much.

And just a HUGE thank you to all of you for calling us, emailing us, sending us carepage messages etc. It is because of all of you that we are able to keep putting one foot in front of the other. During scan time especially. We need your support more than you will ever know or realize. We thank ALL of you so much. I can barely keep my eyes open any longer. Mike and I both are physically and emotionally exhausted. We need sleep in a bad way. I will update tomorrow! 

God, thank you for blessing our Roman as you have. And sweet ^^Corey^^, thank you for keeping Roman's back safe:) Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)        

August 25, 2009
Hello to our family, friends and new friends!

http://picasaweb.google.com/jody.fariello/CTScanAugust25?authkey=Gv1sRgCJqFo-ad46fS6QE&feat=directlink

Dr. Wagner just now called us with the CT results...ALL CLEAR!!!!!! Roman did so great today. I took a pic of him while he was in the CT tube so all of you could see him. We started our day off with a visit from Pastor Edwards and Miss Tina (Roman's speech therapist) early this morning (pic included also). They both came by and Pastor Edwards said the most beautiful prayer over Roman for today and tomorrow's scans. It was definitely what we needed as a family to start these scary scan days. Pastor Edwards and Miss Tina, we could not THANK YOU both enough for praying for Roman and our family and for touching our hearts. We feel so blessed because of your support and faith. It helped us so much today. Thank You so much!  

We have to be at the hospital by 8:15 in the morning for Roman's MIBG Scan. One scan down, one more to go. Because of Roman's back complaints, Dr. Wagner will call us tomorrow night with MIBG results as well. I cannot even imagine waiting until Thursday for ANY result, so I am glad he's going to be calling us. I will let all of you know as soon as we know. Right now, I am going to try to "relax" if that is possible. I know Mike and I are emotional right now. It's been a long day of waiting for results and it's such a rollercoaster ride of emotions. We are drained. Thanks to ALL of you for your prayers. Please continue praying for tomorrow' scan as I know everyone is already doing. God Bless! Jody, Mike, Sheridan and Roman Fariello 

August 24, 2009
Hello to our family, friends and new friends!

Yesterday, we had a ribbon making day. We made 3800 RIBBONS!!!! How amazing is that! we needed that many to be made because of ribbon orders. I wanted to thank everyone who came yesterday to help us. We had a great turnout of people and we could not do what we do without your hands. We are having another Ribbon Making Day again this coming Sunday. We have to... we still need about 8000 ribbons to fill orders for the month of September for events and functions that people are having for Childhood Cancer Awareness month. So, God willing everything turns out fine with Roman's scans this week, we will definitely be making ribbons on Sunday. So, remember new people are always welcome. If you need directions or have any questions, you can email me at Shivers@insightbb.com. Thanks so much for helping us help the children of this country and beyond get the recognition they deserve.

This morning, my nerves are getting the very best of me. My stomach is so upset and I am physically ill right now because of worrying so much. This morning, Roman looked at Mike and I and asked us "are we going to my hospital today" and I replied "No Bud, tomorrow we go to the hospital for your scans". It's sooooo amazing how he just KNEW it was time for these dreaded scans...Mike and I realize that he senses from us that it is time. It's amazing to me how young he is that he knows it's scan time without a word from us. Such a horrible and stressful time for our family. I know he feels our fears. And if he does, I know Sheridan does too. Tomorrow, we have to be at the hospital by 11:30 for Roman's CT Scan. Then, after his scan, he will get his injection for the next day's MIBG Scan.

Mike and I know that there are literally a TON of people praying for Roman. We appreciate each and every single one of them. One of our VERY SPECIAL PRAYER WARRIORS is grandma to  cancer warrior Aiden. "MOM MOM Nichols", Elaine, sent Roman the most adorable dew rag for him to wear...it says CANCER FEARS ME...and with scans this week, she wanted Roman to wear it and to have it to scare the heck out of cancer. Elaine, we love you and we thank you so much for sending Roman such a wonderful gift of super strength! We love it and Roman looks so cute wearing it! So adorable! Roman, we love you so much! We know CANCER FEARS YOU SON!!!!! Here are a few pics of him wearing it...click on pic below...

http://picasaweb.google.com/jody.fariello/ThankYouSoMuchMomMomNichols?authkey=Gv1sRgCMrZ0vzuvKHGXA&feat=directlink

We thank all of you for your support, your offers of meals, offers to help with Sheridan, offers for just ANYTHING and EVERYTHING we need this week. What we need the most is prayers...and with all of you behind our son, we know we have all the prayers we need covered. I will update when I get results. Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello

August 19, 2009
Hello to our family, friends and new friends!

Today was Sheridan’s first day of school! She started 1st grade today. I was thinking about her at different times throughout the day, like at lunch time etc. Wondering about her and how she was doing. Thinking about how my first born is already in 1st grade. Thinking about how this is the first time she will be away from me for a full day for school. Time really does go right by us very fast. She is literally growing up. She did amazing today. She ate everything I packed her for lunch and even her afternoon snack too. She eats lunch so early that they get a snack in the afternoon. Click on link to see Sheridan and then of course another pic with Roman too...

http://picasaweb.google.com/jody.fariello/SheridanSFirstDayGrade1?authkey=Gv1sRgCNiw0rzj7aODPg&feat=directlink

It was extremely difficult to give Sheridan my full attention today because of what has been going on with Roman. I hate what cancer does to us. I did enjoy today though, walking Sheridan to school with Roman and also with Marsha, Dave, Daphne and Dawson too. I was not going to let cancer take over today.

It was hard to focus on the GOODNESS of the day and the excitement, knowing Roman woke up rubbing his back. Then, this afternoon, he verbally complained that his back hurt him again. Of course, my gut feels like it wants to just vomit every time he tells us it hurts him. My heart aches. Mike’s heart aches too. Because we know how horrible God forbid this COULD be for Roman. Mike and I are doing our very best to stay positive and think maybe Roman fell on it, hurt it somehow, pulled a muscle, or growing pains. We have to think like that, or we would not function daily at all. Neither one of us wants to think the worst however, we are realist too. Our focus is and always remains Roman and Sheridan, no matter how horrible things are or how bad or scared Mike and I are, they are our NUMBER 1 priority always.

We have been sent numerous emails, carepage messages, phone calls, offers for dinner etc. I have to tell all of you, knowing we have such an ABUNDANT support team out there makes us take this a little better. It helps us knowing that Roman has a TON of people praying for him. I know God is extremely tired of hearing people pray for Roman and our family. We know that whatever is going on with Roman’s back, it is out of our control and in God’s hands and in his control. We cannot say THANK YOU enough for all of your loving support for our son and for our family. Our hearts are truly full because of all of you.

Some of you, mostly our closest friends and family, have wondered how we could have kept this info with Roman’s back to ourselves for a week. Well, over the course of Roman’s journey, Mike and I have learned to become very good “actors” or “chameleons”. When we need to change our mood or our feelings quickly, we just do it. This is not because of any of our family or friends…it’s just how we have managed thus far with Sheridan and Roman seeing us when we are faced with what we are faced with. Please don’t take it personal. I know it’s hard for some of you to understand, that among Mike and I being the worried cancer parents, we also take on at the same time the role of protectors. To protect our closest family and friends because of what we are going thru. I know it may sound confusing, I know it won’t sound confusing at all to our fellow cancer parents. It’s already bad enough that Mike and I worried sick…trust me, if we didn’t feel as scared as we are, we wouldn’t scare all of you too. But with sharing news like this, comes wonderful support for Mike and I in a way we could never explain unless you were in our horrible shoes. So, please do not think that we have kept this info inside on purpose. We were just assuming our roles as we always have done since Roman’s diagnosis.           

Tonight, Roman was playing outside before dinner, and he fell on the sidewalk. For once, I felt relieved that he was actually crying from something that happens all the time with kids. It gave Mike and I some comfort knowing he is playing and was being a “normal” kid. Now he has a bloody scraped knee and elbow. He seems to be doing fine now with some band aids and TLC.

Onto some ribbon news…I know A LOT of you have ordered some ribbons from the website www.PinOnTheGold.org. I am having a RIBBON MAKING DAY this coming Sunday so we can tackle a lot of these ribbon orders. We need to make well over 10,000 ribbons. I truly think that is amazing that we are going to get that much gold out there for the kids of this country and beyond. So, if you are in our area, and want to help us make ribbons this Sunday starting at 1:00, we’d LOVE TO HAVE YOUR HANDS!!!!! We NEED your hands now more than ever. Any questions or need directions, email me at Shivers@insightbb.com. We need hands to fill all of these orders across the country and other countries. I thank you in advance for your help.

I guess that is it for now. In the meantime, if anything at all changes with Roman, I will update and let all of you know. God, please keep blessing our Roman as you have. God, please give Mike and I the strength to keep on going even with our biggest fear hanging over our heads. Please PLEASE continue to pray for Roman as all of you have been doing. Thanks to all of you so much and God Bless!  Jody, Mike, Sheridan and Roman Fariello

August 17, 2009
I have something to tell everyone and I debated whether or not to share it with all of you.

One thing I have learned from my fellow cancer parents in general and on carepages and caringbridge is that our joys are each others joys, our pain is each others pain and even our worries are each others worries. Well, the Fariello parents are worried….like never before. And now I must share with all of you our worry about Roman too.    

We are REALLY scared for Roman this scan time. Mike and I are filled with extreme worry because Roman has started to complain about his back hurting him. This all started last week when were in the car heading to Gatlinburg for our getaway. Mike and I assumed that it was due to him sitting in his car seat longer than usual. But, it happened while we were down there and on our way home too. And, since we have been back at home, he has told us his back hurts on more than 4 occasions. We have given him Tylenol because he has requested it for his back pain.

To say that Mike and I are filled with the most extreme fear humanly possible is an understatement. With Roman having scans next Tuesday (25th) and Wednesday (26th), there really is not much we can do on our end for now except just WAIT…and that is truly the hardest part. Wait for scans. Wait for results. Wait to hear, if anything, about his back. I HATE scan time. It is so hard on Mike and I. Hard on Sheridan and of course hard on Roman. It is the worst kind of toll taken on all of us in different ways. I cannot stand all of the unknowns on this journey. It is more than difficult. Other than complaining about his back hurting him, he is doing fine. Playing, eating well, drinking well, and just enjoying the days as he should be, like a “normal” little boy.

Me, on the other hand, what is going on inside of my head is not pretty. I am filled with all kinds of horrific information and what if’s. My brain goes there thinking the absolute worst for Roman. How can I not go there with each complaint he verbally releases to us??? I am just sick with fear. I am filled to the point of no return with fear for my son’s life. Why is his back hurting him like this??? Why now all of a sudden??? Why is a 3 year old little boy telling us his back hurts!!!!! And then points to the same spot on his back each time after I ask him to show us where it hurts! Then I force myself to ask the inevitable…”Roman, does it hurt on the inside or the outside”…he replies “the inside Mommy”.

This is what we live as cancer parents 24/7 non- stop. We worry constantly. We never get a break from worrying or stop worrying ever. We worry non- stop with each ouchie, rash, bump, lump, pain, headache, eye ache, fever, you name it we worry about it. It is not a typical worry either. It is a worry of life or death for our son. It is a worry about being sucked into the black hole all over again.

 Mike and I took Sheridan and Roman to school tonight so we can meet her new 1st grade   teacher. Afterwards, we stopped at the store and got a few things we needed. We came in, started dinner, ate dinner, and just now remembered about the groceries being left in the back of the van. Mike and I are not ourselves and the groceries just proved it by us leaving them in the van. Our brains are not on anything else but Roman’s back pain.

 I cried today thinking about all of that again.

I cried today because I don’t want Roman’s back to have anything going on inside of it.

I cried today because I worry about Sheridan and all of this heavy stuff being forced on her.

I cried today because I feel so helpless as I watch my 3 year old son ask me for Tylenol because his back hurts him.

I cried today because I cannot do ANYTHING to help him and make all of this disappear from him and our family.

I cried today because I know I wouldn’t want everything to disappear, because so much good has come from Roman’s cancer into our lives.

I cried today because our lives are in limbo as we wait every 3 months to see if we get a green light or a red light.

I cried today because I fear relapse more than anything.

I cried today because I needed to…

I cried today because I am beside myself right now with worry and there’s not a doggone thing I can do to change any of this. I cannot stop it. I cannot change it. I cannot take it all away.

I cried today because I cannot protect my son.

I cried today because I needed to…

I cried today because I am a cancer mom.

 Please start praying that Roman’s back pain is nothing. Please pray that God keeps Roman safe as he has been doing. Please pray that sweet ^^ Corey^^ is watching over Roman and keeping “his back safe” as he let Roman know when he went into heaven.

 Thanks to all of you for your prayers. Mike and I are so worried for our son Roman.

God Bless! Jody, Mike, Sheridan and Roman Fariello
August 12, 2009
Hello to our family, friends and new friends!
I am throwing out a HUGE call for volunteers to make ribbons this coming Sunday at 1:00 at our house. With the website being new and getting alot of attention, the ribbon orders are just pouring in. It's such a great thing to see for the children of this country and beyond, especially with September being next month!!!! 
 
Since my update yesterday, we have recieved over 10 more ribbon orders totaling over 3000 ribbons. We need ALOT OF HANDS to help us make these and get them out to everyone who has ordered. Even if you have never volunteered before, we need you and your friend's hands as well. So, this coming Sunday, at 1:00 is a RIBBON MAKING DAY. For questions or directions, please email me at Shivers@insightbb.com or at Info@PinOnTheGold.org 
 
CALLING ALL RIBBON MAKERS!!!!!!!! WE NEED YOUR HANDS!!!!!!!!! Love and thanks to all of you in advance! Jody, Mike, Sheridan and Roman Fariello   
August 11, 2009
Hello to our family, friends and new friends!
We decided that we would have a Fariello Family Getaway this past weekend. We took the kids to Gatlinburg TN. We had so much fun! We left Friday night when Mike got home from work and returned last night. It felt good to get away just the 4 of us. We needed this time away together...with school getting ready to start for Sheridan next week and with Roman having scans at the end of the month...a getaway is just what we needed! We did alot of fun things like go to the arcade and spend money all for the kids to exchange tickets for junk:) And then we did the Ski Lift, Old Tyme Photos, some swimming, go-carts, a Jurassic Dinosaur boat ride etc. You name it, we did it and enjoyed every single second of it! It was worth everything for the kids to have fun.
Click on the link to see the pics of our trip...
 
 
 
Today, Roman had speech therapy with Miss Tina. She gave him a test with a book of things to say out loud as she pointed to different things. He did really well. Only with the L sound and he is working on that and getting much better with it. With the results of the test she gave him, we have decided that Roman is right where he should be for his age. A few of the sounds he is having a tiny bit of trouble with are sounds that come later with age anyway like 4 or 5. Roman will not be 4 until October so she told me he is doing well at this time. She will see him one more time probably in September, and then we will not see her for a couple of months. In between that time, she is going to give me some materials that I can work with Roman here at home, and then she will retest him to see if he is the same or better or worse God forbid. She does not feel speech therapy is needed for Roman on a regular basis right now...so with that...we'll take all the great news we can get for Roman!!!! He is doing great with talking. Thanks Miss Tina, we love you always!
Click link below to see Miss Tina and Roman today!
 
 
The new website is doing very well since being launched on Friday. We have had orders come in every day since Friday and totaling over at least 2000 ribbons already. It is so awesome that the gold is getting out there for the kids of this country and beyond. The new website is up on the PAC2 homepage as well, thanks to Bob (AJ's Dad who co-founded the PAC2). Visit www.PinOnTheGold.org for ribbons and info. 
 
Please keep Samuel, Victor, Noah and Maddie in your prayers as well as soooo many other families like ours just trying to live and breathe every day looking over our shoulder. And please pray for all the angel parents out there missing their sweet children, far too many angels in heaven. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello
August 7, 2009
Hello to our family, friends and new friends!

Yesterday, Roman and Sheridan had their dentist appointments with Dr. Greenhill. His staff is amazing! I am happy to report that Sheridan has no cavities. She also has no loose teeth at this time…so…no baby teeth starting to fall out any time soon for her. He said maybe 6 months to a year for her.

Roman got his teeth cleaned and a vitamin treatment put on them. Dr. Greenhill is also a dentist for Cincinnati Childrens Hospital Medical Center…good thing too for Roman…we have decided to hold off a bit to put caps on Roman’s 4 front teeth and sealants on his other teeth. Meaning, we will hold off until after the new year to put Roman to sleep for ex-rays, 4 caps in the front and sealants on some other teeth for protection. Roman will have his baby teeth for about 4 more years or so. That being said...

Dr.Greenhill wants to make up for lost time with Roman and bring him up to speed where he should be. This will protect Roman’s teeth from further decay. He has no cavities, just decay from chemo damage and from not being able to brush his teeth for almost 8 months all thru treatment and the transplant process. People may be wondering why no brushing the teeth during that time…well, the fear of infection was so high and with immunity being at zero a lot of the time, we took no risk lightly. Roman used Biotene rinse and a toothette and nystatin for his oral care during treatment. Going thru all of this, mouth care and teeth were the least of our worries…and now we are ever so grateful to have Roman even going to the dentist... period. So another huge milestone for him. Dr. Greenhill gave us a mouth rise for Roman to use for the next 3 months. We go back in November for a fluoride treatment. At that time, we will see where Roman is and if things have changed. We will also more than likely pick a date to do all of this dental work, after the new year, since Roman will need to be put to sleep for it.

A little bit of info on my thyroid…I gave blood a week ago to do a post op check on my TSH level and T4. I am happy to report that my remaining left side of my thyroid is functioning just fine and my levels are within normal range. Thank You God!

Now, onto website news……I am very happy  to announce our new name for our Gold Ribbon mission…please go to www.PinOnTheGold.org and check out our new website.

PIN ON THE GOLD was named by my husband Mike. He came up with a few new names and this one caught my eye. It’s short and it’s catchy. I want to thank Mikki Schaffner for her amazing photography that she so graciously DONATES to us for free. Mikki, you are a blessing in our lives and we could not do any of this without your love and support of not only Roman and our family, but our awareness mission as well for the Gold Ribbon. I also want to thank David Powell, who is currently working our GOLD RIBBON MAP. It is almost ready and I will let everyone know when the map page is up. We will be able to track all the ribbon orders on this map across the country and beyond. It is awesome and I cannot wait for all of you to see it when it is complete. Thanks so much to David Powell. I also want to thank Kathleen Bertline for brainstorming ideas with Mike and I and helping us with the website.

Last but certainly not least…I want to thank my husband Mike…without him none of this would be even possible. He does computer work for a living and his knowledge would have cost our organization a fortune. I love you Mike and I appreciate all the long hours you worked on getting the website up and running for us. You are the best husband/webmaster ever!

With the new organization, we are currently seeking a 501(c)3 non profit status. This will open up many doors for us to get the GOLD RIBBON out there across the country.

The ribbon makers out there, who have helped at every ribbon making day, or even just one time, we appreciate your hands and your time more than you will ever know. Our organization couldn’t have possibly filled all of the approximately 40,000 plus ribbon orders that we have filled so far without your helping hands. It is working and people will begin to understand what the GOLD RIBBON stands for across the country and beyond because of wonderful supporters and volunteers who want to make a difference. So, please go check out www.PinOnTheGold.org and spread the website around to everyone you know. Help us PIN ON THE GOLD everywhere!!!

I guess that’s it for now. Please continue to pray for the families of Victor, Noah and Samuel... and the so many other families out there getting news that will ultimately change their lives as they know their lives to be.

God, please keep blessing our Roman as you have. Have a wonderful weekend everyone! God Bless! Jody, Mike, Sheridan and Roman Fariello 

July 30, 2009
Hello to our family, friends and new friends!

I wanted to share with all of you the most beautiful thing...this is for all of my fellow cancer moms, allergy moms and moms with "special" beautiful children...please read ...

THE CHOSEN MOTHERS

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger....

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has its’ own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you."

No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps -"Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air.

God smiles, "A mirror will suffice."

Special thank you to Missy, Trey's Mommy cp:TheChemoKid

Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)

July 28, 2009
Hello to our family, friends and new friends!

Roman hit a HUGE milestone today....he got his very first round of immunizations post transplant!!! HOORAY ROMAN!!!!!!! All the shots he got when he was a baby were wiped out due to his transplant. He got 3 shots today... 2 in one leg and 1 in the other. He cried a bit but then was just fine as soon as he got his token for the toy machine!!! He even got an extra token for getting his shots! Sheridan also had her 6 year well check up along with Roman's shots. We were at the doc's office for about 2 hours. Both kids are growing like weeds and doing well. We could not ask for anything better than that! Roman handled things way better than I did. I was a nervous wreck with him getting his shots. I guess being a cancer parent, even the little things and "normal" things bring on the nerves for me. It's a HUGE deal for Roman with today's shots. It is one more step closer to NORMALCY for Roman. For that, we are so grateful to God that Roman is where he is today. 

To see Roman with his bandaids from today...click on the link below...

http://picasaweb.google.com/lh/photo/JK0-WGHBh2pcybEvHcyzpw?authkey=Gv1sRgCLen46PUlpbVRw&feat=directlink

I am happy that Roman got his shots today because it is such a big milestone for him...but the fear of innoculating him with all of these shots at once worries me. I know my fears are justified and I know that whatever is going on with Roman in his life, I will ALWAYS worry more than ever about things. How could I not feel that way with everything that Roman has endured and still is enduring and will endure in his future. Roman, Mommy and Daddy are so proud of you and we love you so much Buddy! You are so strong! You calmed your Mommy down today when I was holding your little hands, looking you in the eyes while you were getting your shots in your thighs. I just thought for a moment...how blessed we are to have reached this milestone with you. It's all of these things that other families on the outside usually take for granted...we as a cancer family don't take ANYTHING for granted at all. Thank You God for today!

Saturday, we had Sheridan's 6th Birthday Party! It was a Hannah Montanna Rockin' Party! Some of the kids (15 kids total) dressed in their rockn' gear and everyone had a great time! And special thanks to Aunt Jenn for making such awesome Hannah Montanna cupcakes per Sheridan's request! I cannot believe our Sheridan is 6 already and getting ready to go in the first grade in a couple of weeks! Unbelievable!!! To see pics from the party and other pics of the Roman and Sheridan, click on the link below...

http://picasaweb.google.com/jody.fariello/July2009?authkey=Gv1sRgCLen46PUlpbVRw&feat=directlink

I also wanted to thank all of you for leaving your comments on Roman's carepage. All of them mean the world to us and your support is exactly what we need no matter what is going on in our lives:) So, thanks so much to all of you for being such a wonderful carepage family to us!

Our new Gold Ribbon website is coming along very well. It should be done here real soon. I will let all of you know when that it's completed. I also wanted to get the word out there that we will be having a RIBBON MAKING DAY on this Sunday at 1:00. If you can make it, that would be great. If not, maybe we'll see you next time around. New hands are ALWAYS welcome. For more info or questions or directions just email me at Shivers@insightbb.com

I do want to ask for prayers for 2 of the kids I follow...Samuel Anderson cp:SamuelAndersonCarePage and Noah Biorkman cp:NoahScottBiorkman...both boys and their families NEED prayers now more than ever due to relapses. These families are living out our worst fear. Please say a prayer for them for strength and guidance. Thank you for doing so.

That's it from me for now. God, we thank you for today for blessing Roman to have his shots done. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)

July 20, 2009
Hello to our family, friends and new friends!

Now that I have had some hours to digest some of this info I learned at the NB Conference…I am trying to figure out the best way to express how I feel. Usually I don’t have trouble with expressing myself and what and how I am feeling…it’s different this time.

I want to start out by thanking Kathleen Bertline for attending the conference with me. I know she was consumed with over whelming info, especially being a non cancer parent and there for me as my support beam. Kathleen, I love you and thank you for taking such great care of me while we were in Chicago. Thanks to her husband Ken and daughter Haley for letting Kathleen be my support beam.  

I also want to thank Pat Tallungan, president and founder of the Children’s Neuroblastoma Cancer Foundation (NBHope.org) I admire her so much. She is the reason this conference even happens. She lost her son Nicholas in 1999 to evil NB. She wanted to do something to help the families who were stricken with NB. To all of my fellow NB families out there who have never attended the conference, it is well worth going. Think about and start planning to see if you can attend next year’s conference.

It is very telling to be sitting in a room with so many families (250 registered I think) that were in your shoes, currently in your shoes or heading in your shoes. And I say, what a pair of UGLY shoes that all of us cancer parents wear daily for our children’s lives. I met some of the most amazing families across the country this weekend. Like the Perschon family, who’s son Drew is wearing exactly the same shoes we are wearing as both of our boys are currently NED. Drew is about 6 months behind Roman. They both are around the same age as well. Kate, your family is beautiful and I so enjoyed talking to you so much. I thank God you were able to be there at the conference for us to meet. It’s VERY nice knowing we are not alone in the decisions we have made for our son. 

I also met a wonderful family who’s son Sam is still fighting the EVIL beast. He is Sam Farris. I met his Mom Teresa on Roman’s carepage. She opened up to me and told me she’d be at the conference. I also got to meet her sister and brother in law as well. The whole family was just so sweet and felt we knew each other for a long time already and I am so grateful to have met you Teresa…your Sam is quite the gentleman and he is so strong and polite! Such an amazing warrior he is. I hope that Sam continues to show the great strength and endurance he has in him always!

I also met another wonderful family, the Ormsby family… Rachel, Scott, Nathan and Kate. I have been following Nathan for quite some time now. He also gets treatment at Cincinnati Childrens, I have just never seen them when we have been there. Nathan looks so great. He has been battling 3 years now non stop. He has never reached NED status. His disease is stable due to a drug called ABT-751. He literally has been thru everything. He is getting ready to start round 16 this week. Looking at Nathan this weekend, gave me strength to get thru the weekend. Thank you Nathan for being such an amazingly strong cancer warrior who won’t take anything lying down! Keep fighting little man!

And finally, I met a cancer Mom who brought her sister with her for support. Her name is Kim Fox. Her daughter’s name is Kiara “Kiki” Fox. She is also a Cancer Warrior but a princess at the same time. She just went thru her transplant and she is getting ready to start radiation soon. Kim, it was so nice connecting with you and your sister. I hope you know I am here for you in every way I can be throughout your journey with your beautiful warrior princess. We will be praying hard for your family.

That was a bit of the insight of why it was so emotional for me. I met a lot of amazing and strong families just like mine. Some of them having to endure way more than we ever did.

There’s a category of families just starting out with being newly diagnosed. Another category of families still going thru treatment nearing the end of protocol. Another category of families who were dealing with relapse or stable disease for years even or more. And yet another category of families who were grieving their child who was taken by this EVIL NB.

And then…there is me…and our family… the category we fit in is for the families who are done with protocol and who are not currently on any treatment because their child reached NED status. I don’t know what expectations I had going to the conference but I desperately needed to see and talk to some STAGE 4 NEUROBLASTOMA SURVIVORS….and I did not get that this weekend. I was needless to say more than disappointed and so sad. Anger set in after I got home. I am still very much an emotional mess because of all of the info. But more so because I feel that Roman and our family are in a very “lonely” place being NED. I don’t feel guilty at all about being where Roman is. I thank GOD each and everyday we have our Roman. I just wish that other parents out there who wear our EXACT shoes and would be more like me and tell their story and share it with families like mine so that we too can have HOPE and see HOPE walking, talking, moving, breathing, graduating from high school and college, getting married, getting a job. Just living life. Where are those parents????? Where were those parents this weekend??? I am crying out for HOPE in the form of a STAGE 4NB SURVIVOR. I only know of 4 who are in their late teens or early 20’s. There’s got to be more than 4 out there!!!

I told all of you that I was a bundle of emotions. I am carrying ALOT of anger towards these parents. Maybe I shouldn’t be angry at them, but if the roles were reversed here, and Roman was the “lonely” survivor, I would either get him to tell his story if he wanted to or I would tell his story to stage 4 families who NEED to HEAR it.

The conference also pointed out to me that research IS being done for kids with NB. I just wish MORE research could be done without killing our kids, torturing our kids, and drugging our kids. There’s got to be a better way out there. I did get a lot of helpful info for Roman’s future God willing. I also realized there is a need for more research needed once the kids are done with protocol. It’s like the kids that are NED are forgot about and are not even on the radar anymore. These are the kids that should be followed, like Roman. These kids should be on SOMETHING or be monitored more…what if the key is in the kids who reached NED status??? What if the key is in Roman’s bloodwork now??? What if the key was monitoring these kids more often and what was it in their bodies that responded and other kids didn’t respond???

I don’t know, maybe I am just off my rocker…but I feel Roman needs to be monitored more with blood sampling and research on kids like him. Which brings me to why I feel the way I do…out of almost 250 families who registered for the conference….about less than 8 families (and I aimed high with number) were exactly where Roman is…currently NED off treatment. Talk about scary info in your face and overwhelming info hitting you smack in the face. The majority of families who were there were angel families, stable disease or relapse families, newly diagnosed families and then an extremely small amount of families who are NED.

I have tried real hard to come to grips with the fact that maybe these families are “LIVING” now and don’t want to look back at the road they traveled down once before. I have also thought about maybe their kids don’t want them to share their story with the world or whatever…but I still cannot get passed the fact that if 600 kids a year get this EVIL NB, the odds are that 1/3rd of them make it and survive…that would be about 200 families…WHERE ARE THEY????

I am sorry for going on. I have a lot of stuff boxed up inside of me. I don’t want anyone to think that I did not enjoy the conference, I certainly did. And hopefully next year, Mike will be attending with me. I just wanted to let all of you inside of head and my heart about what we are faced with right now. I already knew the odds were not great for Roman. I just think it would be really nice if we could hear and see some more survival stories out there. PLEASE, for the sanity of parents like me, I am crying out to you SURVIVORS to share your stories and give us HOPE!!! I know of Kevin, Sebastian, and maybe 2 more. It’s hard to find a STAGE 4 SURVIVOR out there and I don’t know why!

Ok, I feel better…ok, not really…but I do feel better to have let my feelings out. Remember, these are my personal and very raw feelings I am sharing with all of you as my therapy to let it all out. It’s a lot of info to digest. I am still unable to digest ALL of it as of today. It’s very hard for Mike and I to walk that fine line we do in the Fariello household with Roman and Sheridan every day. The balancing act is very difficult on us. There are times when I just want to put my head down and just sob. But I don’t, I keep on going for Roman and Sheridan…and then I just cry in the shower or when they are outside playing. There are times when I lie awake in bed thinking about the future, and all of the what if’s surrounding our journey with Roman. I worry constantly about having that horrific talk with Sheridan some day in the future when we have to tell her the RAW and UGLY truth about her baby brother’s life. I have thought about that conversation millions of times here lately because she is turning 6 years old tomorrow…pretty soon she is going to know the UGLY truth about Roman and that we are not a “NORMAL” family at all.

There are times when I think about death. That all came so clear to me when sweet Corey was taken away. I think about that horrific day when Mike and I have to have the strength to sit Roman down and tell him the UGLY truth about his life. How do you tell your child they have a very deadly cancer…and just because you are fine now, doesn’t mean diddlee doo, it could come back and you could still DIE!!!! How are we supposed to do that Mike and I! How are we supposed to handle late effects from all this horrific treatment God willing Roman survives into adulthood! How is Sheridan going to turn out??? How is Roman going to turn out??? Will they both be ok??? Will Mike and I have the strength to carry on as we are now! I can tell all of you one certain thing…The Fariello household is ALIVE AND WELL with OVER ABUNDANT LOVE for our kids. That is the one true thing that is GOOD in this nightmare. We live one day at a time in our household. Some of you are planners like me…but when you have a child with a deadly cancer, life comes to a complete STOP and everything in life is planned around them. NOTHING else matters but their life and your family life. No big houses, no expensive cars, no costly trips, no fancy dinners, no great jobs, no amount of money, no NOTHING even comes close in comparison. If Mike and I could, we’d trade everything we had and give our own health for Roman’s life to make sure he would make it and beat this. We as a family, continue to put one foot in front of the other, no matter what lies ahead for Roman and our family. We have truly been blessed by the most amazing support team ever in our families, friends and even strangers. It is with knowing all of that, we are able to continue on the biggest fight of our lives for our son’s life each and every single day.

Thanks to all of you for being an “ear” for me to vent. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

July 19, 2009
Hello to our family, friends and new friends!

I have been home from the NB Conference for a few hours and all I can really say right now is that I am emotionally drained and exhausted. It was ALOT of info to absorb and I am very emotional. I don't know if it's because I am home and I have missed Mike and the kids or what, but I am a mess.  I am in no shape right now to do an extensive update on my weekend at the conference. I need to spend some much needed quality time with Mike and the kids. I have missed them so very much.

Please, do me a favor tonight...when you give your kids a kiss tonight for bed... give them an extra kiss, and an extra tight hug and just hold them. And most of all, tell them you love them more than life itself. I will update more tomorrow with an extensive update about the NB Conference. Love to all of you! Jody, Mike, Sheridan and Roman Fariello  

July 15, 2009
Hello to our family, friends and new friends!

I want to start off by asking for some prayers for my brother in law Chet. He had his leg amputated about 5 inches from above his knee on Monday. He remains in the hospital and will be there for the next few days. Please pray for him and my sister and my niece and nephews. The challenges ahead for him and the family will be numerous, but knowing they have prayers supporting them from all of you will mean a lot. Thank you.

I know many of you Roman supporters obviously follow our sweet ^^Corey^^ cp:coreynickell and vice versa. For many reasons, Debra and I both decided to end RALLY together since we created it together. We have decided to go in two different directions. It might have sparked some confusion and concern. It does not mean that both of us will not be doing EVERYTHING we can possibly do to bring about awareness for childhood cancer. We will… we will just be doing it separately. Both Debra and I are driven individuals. We have been a constant presence in each other’s lives for about 2 ½ years now. I think God is always making change apparent in our lives. Doors are always opening up for us. It’s up to us to take the chance and walk into that door that was opened up. That’s what Debra and I are doing. Change is good. We have been thru every emotion humanly possible that 2 moms could possibly feel together. The love we feel for Roman and ^^Corey^^ is endless. So please, don’t think that change is not good, because it is for the both of us.

Speaking of change……the new website is coming along and we have chosen a new name for our gold ribbon awareness campaign. I cannot wait to share it with all of you. The GOLD RIBBON must get out there across our country. And with all of you helping, it will. That being said, since the website will not be up for about a week or so, if you want to make a ribbon order, you can email me at Shivers@insightbb.com and we will mail them to you. September is coming fast…don’t forget to order your GOLD RIBBONS ahead of time for your events that month and beyond. I will keep all of you informed when the new website will be up and ready to go.

I will be leaving out of town on Thursday and returning on Sunday for the Neuroblastoma Conference being held in Chicago. I will be taking Kathleen Bertline as a support person for me…because I know I will need one. Mike will be here with the kids. It will be very emotional for me, because of Roman and ^^Corey^^. I will be getting a lot of vital info about treatment options and therapies and the latest research being done in NB. I am also looking forward to meeting other NB families just like ours. And mostly looking forward to seeing and meeting some long term NB survivors. I need to meet them and see them. It will be very good for me to talk with them about how it was for them growing up a survivor and side effects etc. So, I will give everyone a full report when I return on Sunday.

That’s enough for now. WHEW that’s a lot of information! God, please bless Debra and I as we go ahead on different paths for Childhood Cancer. God, please keep Kathleen and I safe traveling to and from the conference. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

July 12, 2009
Hello to our family, friends and new friends!
Today's ribbon making we made 2400 GOLD RIBBONS! HOORAY!!!!! We are definitely getting prepared for CHILDHOOD CANCER AWARENESS MONTH in September and for all of the incoming website orders. Thank you so much to all who attended today's Ribbon Making Day. We could not do this without your hands:)
 
I have some new and exciting news to share with all of you...RALLY 'ROUND THE GOLD RIBBON will be undergoing some major changes here real soon. Debra Nickell has decided to pursue other avenues. RALLY 'ROUND THE GOLD RIBBON will have a new name and will be launching a new website. It will still maintain the same focus and mission for FREE GOLD RIBBONS for awareness for the children of this country and beyond. It will just have a different name and a new look! To our existing supporters, we appreciate everything you have done and continue to do in the name of Rally. Without your help, support and your hands we could not have come this far. We hope that you will continue to support us as we transition into our new organization. The new organization will be pursuing legal non profit status. I will keep all of you informed of when the new name and website will be up and running. While undergoing the major changes, the actual RALLY website www.RALLYROUNDTHEGOLDRIBBON.org will be "under construction". Rest assured, as soon as everything is completed with the new website and new name, I will let everyone know.
 
We also have Roman's scan dates already for the month of August. On Tuesday August 25th, he will have a CT SCAN of his head, chest, abdomin and pelvis and his MIBG Injection. On Wednesday the 26th, he will have his MIBG SCAN. Then, on Thursday the 27th, he will have a clinic visit with Dr. Wagner and we will discuss results as well. So, prayers are definitely needed already for Roman as we are on that rollercoaster ride of every 3 month scans.
 
That's all I got for now. God please keep blessing our Roman as you have. Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello:) 
July 10, 2009
Hello to our family, friends and new friends!
First of all, I want to say thanks so much for sending Roman well wishes from his bloody nose accident the other day. He is doing just fine now.
 
I also wanted to send a reminder about Ribbon Making on Sunday at 1:00. If you have any questions or need directions here, just email me at shivers@insightbb.com . Remember we always welcome new hands:)
 
I am also on here asking for continued prayers for little Trey cp:TheChemoKid during his antibody therapy treatment. And am asking for prayers for Samuel cp: SamuelAndersonCarePage he has relapsed in his leg and in both arms. His family's worse fear has come true in the form of relapse. NB is EVIL!!! Please pray hard for both of these families who need any and all prayers they can get for their boys.
 
That's it for now. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello
July 8, 2009
Hello to our family, friends and new friends!
We had another successful ribbon making day today...1729 ribbons were made! HOORAY!!! Good thing too because those orders are coming in for the month of September already! I want to thank Mom, Deb Powell, Kathleen Bertline, Stacey Murphy, Marsha Benjamin, Sharon Schultz and new ribbon maker Dayna Hamm who joined us today for the first time. It was so good to meet you today Dayna and so great to have your hands to help us!
 
I wanted to let everyone know that today we did have a minor accident with Roman...he walked right in front of his sister as she was swinging on the swing and knocked him to the ground...his nose was very bloody from her striking him in the face. He's doing fine now but a little scary for me seeing blood again like that...it's been a long while for me to see a nose bleed like that...it reminded me of when it was like when Roman needed platelets, his nose would bleed severely. But, he is ok now and that is all that matters. Just a bit banged up.
 
We are having another Ribbon Making Day this coming Sunday at 1:00. Again, if you have an hour or a couple hours, we would love to have your hands and your help. If you need directions or have any questions, you can email me at Shivers@insightbb.com
 
I also wanted to let all of you know that the website has had ribbon orders now to New Zealand, Mexico and to the UK. How awesome is that for a grassroots effort! The GOLD RIBBON is getting out there for the children of this country and beyond! 
 
And a reminder to anyone who needs GOLD RIBBONS for September being CHILDHOOD CANCER AWARENESS MONTH...please send in your orders now...September is right around the corner and it will be here before we know it. We are getting orders already for this big month for CHILDHOOD CANCER AWARENESS. 
 
That's all I have for now. God, thank you for continuing to send us amazing people who want to help spread awareness and who believes what we are doing matters and has a strong purpose for the children. Thank you God for protecting Roman today with his nose. And please God, look after sweet little Trey cp:TheChemoKid who is currently in antibody treatment, please keep him safe and send his mommy and daddy abundant strength now. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)
July 7, 2009
Hello to our family, friends ande new friends!
Today, Roman had speech therapy with Miss Tina. She worked with him on a couple of sounds he is struggling with. All in all, he is doing very well:) Miss Tina has informed me that she needs to see Roman twice a month instead of once a month liked we originally planned. Seeing him once a month, there is too much time in between visits and she feels she needs to kind of start all over with him. Hopefully, having therapy twice a month will solve that for Roman. We love you Miss Tina! Thank You!
 
I also wanted to remind all of you about another Ribbon Making Day tomorrow at 11:00. It will be during lunch time so if you want to bring your lunch along, you can eat when you want to. Before the end of this month, we need to get out almost 8000 ribbons or so. So alot of ribbons to make and get sent out. This coming Sunday will be another Ribbon Making day at 1:00. Come if you are able, and if not we will be having alot of ribbon making days to come in the next month to prepare for September's CHILDHOOD CANCER AWARENESS MONTH. We are getting alot of ribbon orders on the website in preparation for this month.
 
That's all I got for now. Please pray for many of our fellow carepage/caringbridge families who are in treatment and who are in constant fear for their children with questionable scan results. Prayers do work. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello
July 3, 2009
Hello to our family, friends and new friends!
I first want to thank all of you for your kind and comforting messages about Corey touching Roman's back as he went to heaven. It is a beautiful storey...one that will ALWAYS be in our hearts, just like sweet Corey is in our hearts. And when Roman gets old enough to truly understand what happened to Corey, we will tell Roman that his friend loved him so much, that Corey made a special visit to only him. How awesome is that!
 
OK...now onto some ribbon news...we have selected many dates to make ribbons. We are anticipating being extremely busy in August for the month of SEPTEMBER which is CHILDHOOD CANCER AWARENESS MONTH!!!!! EVERYONE should be aware of this month. EVERYONE must wear a GOLD RIBBON to honor the children fighting for their lives each and every day...and for all of the angels who went to heaven way too soon. That being said...
 

Here are the dates for RIBBON MAKING DAYS...

Wednesday, July 8 at 11:00
Sunday, July 12 at 1:00
Wednesday, July 22 at 11:00
Sunday, July 26 at 1:00
Wednesday, July 29 at 11:00
 
As we approach the end of July, I will put the dates in an update for the ribbon making days for the month of August. I don't want to confuse anyone with too many dates at once.
Obviously, if you can make one of these dates or more, we certainly appreciate it and your hands. If you have an hour or 3 hours, we need your hands and your help.
 
The GOLD RIBBONS we have been mailing out across the country are being done so because of all of the wonderful volunteers we have been blessed to have! So, now that you have dates ahead of time, hopefully you can work it into your schedules. New HANDS are always welcome!!!!
 
I hope all of you have a wonderful holiday weekend. It's supposed to be cooler out and maybe stormy here. So, we might take the kids to the Aquarium and out to dinner somewhere to celebrate the 4th together as a family. If you know someone who is in the service, THANK them for their service of our country and for protecting our freedom...without them we would not be free to celebrate the 4th! Thank you Joey Brown (Lauren,our angel's husband) for serving our country! We thank all of you for your continued love, prayers and support for our son Roman and our family. It means the world to us! God Bless! Jody, Mike, Sheridan and Roman Fariello:) 
June 26, 2009
Hello to our family, friends and new friends!
I forgot to remind all of you about RIBBON MAKING on Sunday at 1:00 here at our home. We REALLY REALLY need any and all available hands because......we got an order for 10,000 GOLD RIBBONS, that's right 10,000 of them just in one order from the website! HOORAY...that's what we want, to be extremely busy! This order is coming from someone who met us in DC. They are a childhood cancer foundation having a  STRIKE OUT CHILDHOOD CANCER NIGHT with the Durham Bulls!!! Isn't that awesome for RALLY!!!! It will be so amazing to see all that gold and more importantly...OUR GOLD RIBBONS on people!!!!!!! So, if you are free for an hour or a couple of hours on Sunday, WE NEED YOUR HANDS!!!!! New people always welcome!!!!!!!
 
Also, RALLY got our very first international ribbon order all the way from NEW ZEALAND!!! How cool is that! So, amazing and great things happening for Rally 'Round The Gold Ribbon!!!!!
 
That's all I have for now. Hope to see alot of you on Sunday!!! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)

June 25, 2009
Hello to our family, friends and new friends!

The trip to DC was just amazing for me. It was equally amazing for RALLY! We arrived in DC late Sunday evening, it took us about 9 hours to get there driving. On Monday early afternoon, we went for our first meeting with the CureSearch staff. It was very informative with all kinds of number figures, money figures and letting us know the purpose of our visits with congressional reps (like we didn’t know why we were there). It was a day of many meetings with the CureSearch staff and then we got have a meet and greet session with all of the families. Almost 500 people registered for this event. It was awesome to walk around in a room full of people who were there for the same reason…our children! I met soooooo many amazing cancer parents. It was so great to finally hug these strong and wonderful parents and to put faces with names. It was very emotional for me and at times overwhelming.

I say overwhelming because with so many families there with most of them being angel parents, it was a bit “LONELY” for me where I was. And I know I did not get to meet EVERYONE that was there, but in our circle of families we met and talked to, I was lonely parent standing with a child who is still alive. Obviously blessed with having Roman’s life, but on the other hand extremely difficult at the same time to digest what I was witnessing and what I was a part of. The even more scary part of this is of the 9 families or so that were with me, 7 of them lost their child to EVIL NB. That is why I say it was extremely difficult for me at times. I was surrounded by the ever so horrific reality of my son’s deadly disease.

They had a guest speaker by the name of DR. Reaman????  Head of CureSearch doctors and research etc. He gave a speech about the great strides they are making in research for ALL, which is Leukemia. And then got to Neuroblastoma research. Talked about how deadly NB was and that it is still a childhood cancer that the survival rates have not gone up that much. NB is deadly anyway you look at it. Well all I heard from him was poison, torture, toxic and death. Not a good speech for me having a 3 year old NB child and certainly not a good speech for any NB parents who lost their child already. I know research is vital in finding a cure, but in this particular study he was referring to is the antibody study for NB and adding it into the protocol and making it part of protocol from now on….I have a problem with hearing those words like torture, toxic, poison and yes even death…one child in this study died from toxicity…to me, that is not worth their mere 20% increase with all the pain and torture that goes along with it. There has GOT TO BE A BETTER and SAFER WAY TO TREAT OUR KIDS WITH CANCER!!!!!!!!!!!!!!! For those of you who are new to our journey, we absolutely DECLINED any further “treatment” as far as the antibody therapy goes because we felt that Roman was already NED and that if the NB were to come back, it would come back regardless of putting him thru all of that anyway. To Mike and I, it was an easy decision to make because Debra had done one round with sweet Corey and he almost went into kidney failure because of that one round…and she said it was torture in every sense of the word. So Debra’s description made it an easy decision for us to not put Roman thru all of that. I know other NB parents see things differently than Mike and I, and that is fine because it is a very difficult and horrible decision to have to make regarding your child’s life any way you look at it. There is no right or wrong choice. It all just sucks!!!

Then, on Tuesday morning, we met for breakfast and for the Rally. The Rally was NOT what we thought it would be. When I think of a Rally, I think of a person on a horn screaming into it and asking questions about the cause and the people shouting back with a firm yes or no or whatever….not some peaceful stroll down 2 blocks to some park! I guess I was just ready for something bigger and better and louder…how are we as cancer parents going to get attention when we are QUIET!!!!!!!!!!!!!!!!!!!! I don’t understand that way of thinking I guess. I was ready for a REAL RALLY and more prepared for a much bigger VOICE for our children that have no VOICE!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I do believe we turned MANY heads at the Rally. Thinking we are going to an actual Rally, we had our huge RALLY ROUND THE GOLD RIBBON signs and Debra had her pics of Corey both a healthy one and then a month later a ventilator one. Then, pics of Corey’s casket open and then of it closed. Some people were I am sure very shocked seeing Corey, but most people actually felt Debra’s pain and felt her anger and knew why she was there doing what she was doing. As only a true cancer parent would understand. We don’t want to be hushed…and we won’t!!! At least RALLY ‘ROUND THE GOLD RIBBON won’t be. The unspeakable truth is that children die from cancer. And no, no one wants to see that, but they NEED to see it! DC needed to see it! That’s why we NEED more funding for the children of this country!

Our meetings went very well. Jamie with Debra to the Ohio meetings and Kathleen went with me to the Kentucky meetings. It was very impressive and quite easy for us in Kentucky…since KY was the first state to unanimously vote YES for the Caroline Pryce Walker Conquer Childhood Cancer Law. So, I live in a pretty great state!!!!!!!!!!

Senator Mitch Mcconnell’s was the most important to me because I gave him a small photo album of Roman’s transplant etc. and also the video and a copy of one of my rants. My visit to congressman Geoff Davis’s office was great as well. He literally lives right here in my back yard in Hebron KY. I told his staffer that I am ready to meet with him ANYTIME and that he should come to do a ribbon day with us!!!!  

I want to thank Emily Deckelman for giving me copies of the SAVING ROMAN video to pass out at all of my meetings. It was very good to give them the video and to tell them to watch it and see what NB does to a family like mine in Hebron KY! Thank you so much Emily…you are the best and we love you!

All in all, the trip for me was a success. I got to talk about Roman, our journey and what it feels like to live in constant fear for my son’s life. The one thing I want to convey to all of you, is the one thing we already know…….Roman is NOT safe. His cancer is extremely deadly. Roman’s life is so precious! And every single day we live, we wake up with that same agonizing feeling of wondering if today is the day that things will change for the worse with our son. It’s not a good way to wake up everyday, but it is our reality. We are forced to wake up with that agonizing feeling. The only mere hope that we have as cancer parents is meeting and seeing Sebastian, 20 year old NB survivor. It was the highlight of the trip for me as a cancer parent with a 3 year old child with the same deadly disease. Seeing him talk and move and just breathe was a miracle to me. Thank you God for Sebastian’s life!

I will leave you with the pics from the trip. There are a lot of them. I recommend that you click “slideshow” at the top left to watch them…it will be much easier on you that way.

http://picasaweb.google.com/jody.fariello/DCTRIPGORALLYGO?authkey=Gv1sRgCJDI5uaGwIXGYA&feat=directlink

God, thank you for allowing cancer parents to be stronger than anyone could ever imagine. God, thank you for my “online cancer family”…I love all of you and so glad I got meet some of you and hug you! God, thank you for allowing Debra and I to start Rally ‘Round The Gold Ribbon…we knew all along what were doing was so desperately needed for the children of this country. Thank you God for Sebastian! God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

June 19, 2009
Hello to our family, friends and new friends!

On Wednesday, we had another VERY successful ribbon making day…we made 2000 GOLD RIBBONS!!!!!! That is simply amazing! I want to thank everyone who was here on Wednesday to support us and help us before we head on out to Washington DC for CureSearch- REACH THE DAY!

We are more than excited about our trip to DC. We leave this Sunday. We have our signs ready, our pics are ready and of course we have OUR GOLD RIBBONS ready to pass out to everyone we meet and see…all 5000 of them! We are looking forward to meeting and seeing so many of our carepage/caringbridge families we follow and who follow us. Monday night will be a good and emotional time for all of us with the other families. Time spent with the other cancer families will be most precious to me. It will be good to finally put faces with names.

Rally ‘Round The Gold Ribbon orders are doing very well. The website will be taking even more ribbon orders once we get back from DC from all of the exposure. Which brings me to let everyone know…we will not be filling any ribbon orders from the website this Saturday until next Wednesday. Still place your ribbon order request and we will fill it upon our return.

Debra and I will be wearing our BIG WHITE CHEF HATS with GOLD RIBBONS ALL OVER THEM (courtesy of Stephanie’s Mom). They sit really tall on our heads and we will be able to stand out in a crowd, which is exactly what we want while we are there. Our signs are huge and stand out with RALLY ‘ROUND THE GOLD RIBBON on both sides and a HUGE Gold Ribbon in the middle with the website name on both sides too. They look really nice and we will be able to use these for every function that Rally has in the future.

So, please pray for us to have a safe trip to DC and back. Pray for us to have our VOICES heard LOUD and CLEAR for the children of this country. Pray for ALL of our children that this MARCH ON CAPITOL HILL is all about, both warriors and angels alike. God, please bless all of the Dads this Sunday for Father’s Day. God, please keep blessing our Roman as you have. And to our sweet ^^Corey^^ …if they don’t HEAR your mommy and I…they will certainly SEE your mommy and I!!!

Next update will be next WEDNESDAY from me. Mike, I LOVE YOU! And YOU my sweet husband are the very best DADDY ever. Happy Father’s Day Mike!

Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello
June 14, 2009
Hello to our family, friends and new friends!
DRUM ROLL PLEASE..........................................................4000 RIBBONS WERE MADE TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! UNBELIEVABLE!!!!!!!!!!!!!!!!!!!!!!
That is the most we have EVER made in one Ribbon Making Day. I am so happy we have plenty of ribbons to take with us to WASHINGTON DC for REACH THE DAY!!!!! We want to be able to pass out ribbons to everyone we see so that all of us will be wearing and supporting our GOLD RIBBONS for the march to Capitol Hill. This is so vitally important to all of us cancer parents who want to take a stand and be the voice for our children...and what better way to do that than with our GOLD RIBBONS!!!
 
Today, was so amazing to see all of the people here to help Debra and I on our mommy mission. To everyone out there, it is working!!!! RALLY 'ROUND THE GOLD RIBBON will be a KNOWN NAME across the country! Word of mouth for our website is taking off and we couldn't be more happier.
 
I have so many people to thank for coming today...the list is endless...so I will just speak for Debra and I...our hearts are full and we could not be surrounded by any better people than we are. We cannot thank you enough for your help, your loving support and of course your time, your hands and your treats and drinks for our Ribbon Making Days. I have said it all before but I will say it again...we cannot do this alone Debra and I...we are able to do what we are doing because of wonderful people that want to make difference for our children and who truly believe in what we are doing. Thanks to everyone who came today and made 4000 ribbons for the many children of this country who do not have a voice like adults do. WE THANK YOU!!!! A special THANK YOU to fellow cancer warrior mom, Lynne Merk, for coming today. Her son Tony, cp:TonyBoy just completed treatment for medullablastoma. We hope and pray Tony continues on the path of NED status just like Roman.  
 
So, this coming Wenesday, we are doing another one.. that's right........another RIBBON MAKING DAY! If you could not come today and want to come on Wendnesday, we'd love to have you and your hands. We will begin making ribbons at 11:00 and go 'til whenever we stop:) So, we'd love to see you on Wednesday if you can make it. Bring your own lunch if you want to eat since it will be lunch time for people...I will have drinks but obviously cannot feed all of you for lunch:) I wish I could feed all of you but.......well......I think everyone understands that I just can't feed everyone:) So, any questions or need directions, you can email me at shivers@insightbb.com 
 
I will leave you with a funny pic of Roman from the other day and pics of today's Ribbon Making Day.
 
God, thank you for sending us the right people to make our mommy mission a force to be reckoned with. I know you did not just pick Debra and I for no reason to be cancer moms. And to our sweet Corey...we now have 4000 more gold ribbons because of YOU sweetheart! We love you Corey! God,  please keep blessing our Roman as you have. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello:)      
June 11, 2009
Hello to our family, friends and new friends!

I cannot tell all of you how the last 48 hours have felt like for us. A huge bundle of emotions because of Corey, Roman, scan-xiety, and ughhhh…..the waiting for results is just torture to a cancer parent. But all was worth the wait because Roman is still “NED” NO Evidence of Disease.

We saw Dr. Wagner and Polly today for results. Debra went with us. I was a tiny bit worried about Debra being with us. Lord knows how emotional this has been on all of us with Corey and having Roman’s scans right in the midst of losing Corey has not helped any of us. But I knew she would want to be there for Roman, Mike and I. I knew she would not have it any other way, and neither would we. Debra was and is very much a strong woman, cancer warrior mom and loving friend. I admire her so much. And for her to be in the clinic today with us, speaks VOLUMES. Debra, I love you so much. We love you. And we know for a fact, that Corey was with Roman for these scans. We just know it in our hearts that he was right beside Roman the whole time. 

We had a good talk with Polly and Dr. Wagner. Debra got talk to them too. It was definitely a touching moment for all of us. Debra told Dr. Wagner that he has to “take real good care of Roman now because Roman is the next best thing to Corey”. And that’s why it hurts me to the raw bone about Corey, because I feel the exact same way about him as Debra feels about Roman. If two boys and two moms could ever be fused as one, it would be us. I am so touched that Debra came with us today. I know it was more than difficult on her, all while at the same time being relieved for Roman.

So, Roman’s next set of scans will be near the end of August. That will indeed put us back on schedule for scans again. This time everything was separated and at different times and in different months. I am glad we will be back on schedule in late August.

This coming Sunday, we are having a HUGE RIBBON MAKING DAY here at our home. If you want to come, come! If you can only come for an hour, than please do so. If you need directions or any questions answered please email me at shivers@insightbb.com. We are starting at 1:00 on Sunday. We usually go until 4:30 or 5:00. If you want to bring something to snack on, please make sure it is peanut free…if you are not sure, email me and ask me before you bring it. Roman is allergic to peanuts. Remember…new people always welcome. We’d love to have your help and your hands on Sunday.

I have so much I want to talk about but if I did that it would really be a long update. So, I will save some stuff for another update.

I do however have some VERY SPECIAL THANK YOUS to… Tracy Whitney for bringing us dinner last night and to Stacey Murphy for bringing us dinner tonight. And to Kathleen Bertline for getting up early yesterday morning to come sit with Mike and I while we waited for Roman’s MIBG scan to be done.  When I say we have the very best support team ever, I mean it! Mike and I are so very blessed to be surrounded by so many loving people who care about us. Our hearts are full and have been full since April 25th, 2007. Which brings me to a very special THANK YOU to Nick Browning…son of Karen Browning, who worked with Mike at Carey Digital. Karen has been a HUGE supporter of Roman and our family as well as Rally ‘Round The Gold Ribbon. Taking care of ALOT of printing for Rescue Roman and Rally. Karen’s son shaved his head for the St. Baldrick’s Foundation at a local fundraising event. He said he did it in honor of Roman and in memory of Corey. How amazing is Nick!!!! I think we need more young people to get involved just like him! Nick, we appreciate your big heart in wanting to make a difference for kids like Roman and to remember always kids like Corey. Thank you so much for doing an amazing thing for Childhood Cancer Awareness!

Here is a link to see Nick’s pics of his shaved head, a before and after….

http://www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-358187

I do have a special prayer request…for those of you who watched the BIO video “Saving Roman”, the other family that was featured on the video was Missy, Mike and Trey Love. Trey is having a very difficult time with the antibody therapy study he is in right now. It looks real scary for him with high fevers and hives and blood pressure and heart rate issues related to the therapy. PLEASE say a prayer for little adorable Trey and his mommy and daddy. We are thinking about you guys!!!!! Sending strength and endurance your way! 

Finally, I want to thank all of you…our Rescue Roman supporters, our prayer warriors, our carepage/caring bridge families and friends who continue to help us get thru scans and whatever else we toss out there to you. Without all of your loving support, Mike and I and our family would be lost. You give us the strength to keep on going as we do.

God, thank you for blessing our Roman as you have. And to our sweet Corey, we know you are busy playing around up there in heaven…but we thank you sweetheart for keeping your CANCER WARRIOR BROTHER Roman safe and NED. We know you love him and will ALWAYS be looking out for him in a very special way. Roman loves you too Corey! We love you and miss you!

Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello

June 8, 2009
Hello to our family, friends and new friends!

It is scan time again already for Roman....he goes in tomorrow afternoon for his MIBG injection and to swallow his thyroid protectant. Then, on Wednesday morning his MIBG Scan is set for 9:00. I truly have been so busy with Rally 'Round The Gold Ribbon, that I haven't really had time to just sit and wait for the scan day to arrive like we usually do. That is a good thing for me, but as we know good things don't last long...I am already more nervous about the scan today and knowing we won't get results until Thursday morning's clinic visit with Dr. Wagner, just makes it worse and harder on us. The waiting is... well, there are no words for the waiting.

With losing our sweet Corey, and then Roman having his CT Scan just days after and now his MIBG Scan, it is all very different for us this time. It is more real. The threat of a relapse is more real. The threat of losing Roman is off the charts. I cannot even put it into words for you to understand...because until you have worn a cancer parents shoes, you have NO IDEA what Mike and I are feeling or going thru. And, until you have witnessed what Mike and I have witnessed with Jim and Debra losing Corey up close and personal as we have, you have NO IDEA what we are going thru and feeling. Nor would I wish what we are all feeling on anyone.  

I told Debra that our relationship is like a vicious circle. Debra and Jim are in fear for Roman now. That FEAR became Debra and Jim's horrible reality with losing Corey. Mike and I are watching our very OWN fear be lived out thru Debra and Jim. It all just sucks! Any where in our circle, it just sucks. All of it. I have had people say to me ..."Jody you and Mike must be scared out of your minds for Roman now"...well, here is the answer as best as I can describe it........Mike and I have been scared for Roman's life since day 1 on April 25th, 2007. Losing Corey has not changed our fear for Roman. Nor has that fear just started with losing sweet Corey. What has happened since losing Corey, is that fear has become the most unbearable and the most challenging thing for us to even try to understand. Losing Corey to NB is the single most horrific experience in my entire adult life. I am pretty sure Mike feels the same way. There is nothing easy or even managable with losing a child. Corey was not even our own flesh and blood, and we cannot even get our arms around the fact that he is still gone and not with us physically. As all of you can tell, I am having a rough day today:(

Just please pray for clear scans for Roman on Wed. There is nothing no one can do for us right now except to pray for Roman. I will let all of you know about results sometime on Thursday. I may update before then too because of other things to share.

I want to remind all of you that this coming Sunday is a RIBBON MAKING DAY here at our house. Please know all new people are welcome. We need hands. We need YOUR hands to help us make 5000 ribbons to take with us for REACH THE DAY June 22 and 23 to walk on Capitol Hill in DC. Come for a half hour or spend the afternoon with us. We'd love to see you here. Ribbon Making will start around 1:00. So, if you are free on Sunday and loooking for something worth while to do, c'mon and join us. It will be worth your time, I promise. You will leave here feeling good that you were part of something bigger than yourself. Hope to see lots of people and NEW people here on Sunday. Any questions, email me at shivers@insightbb.com

I will leave you with some adorable pics of Roman I took a couple of days ago.

http://picasaweb.google.com/jody.fariello/RomanLOVINGTheCAMERA?authkey=Gv1sRgCKjE1IzKpsu8Jw&feat=directlink

He loves the camera and he was being so silly. I find it fitting that with everything that our family and Roman has been thru and still going thru, he is still just a kid. A kid who has know idea what his little body has been thru. A kid who has no idea just how serious things are and have been with him. A kid who has not a care in the world right now. A kid just being a silly kid.....As it should be. Love to all of you and thanks for being such an amazing support system for our family. God Bless! Jody, Mike, Sheridan and Roman Fariello

June 4, 2009
Hello to our family, friends and new friends!

Today is our sweet Corey's 5th Birthday! It's been a very emotional day for me. My emotions have been all over the place. At one point today, the kids were outside playing... and good thing too because I found myself looking right into Corey's eyes and just sobbing, talking to him. Telling him this is NOT the way he should be spending his 5th birthday. I told him should be playing with his cars and his trucks lining them up, and we should be having a party with cake, ice cream and orange sticks (cheetohs) and strawberry milk! I told him instead of sending balloons up to heaven from Roman and Sheridan, he should be playing with them, running around and having a blast. I shouldn't have to explain WHY we are releasing balloons up in heaven for Corey, to my 5 year old and my 3 year old. That is so NOT fair! It is so NOT right.    

Instead, Corey is in heaven. Running around with Julian, Blake, Coleman, Marissa, Victoria, Jessica Rose, Maggie, John Eric, Arden, Keagie, Caroline, Alex, Eliza, Cooper, Harley, Army, Kody, Grace, Trooper Dante, Jay Jay, Chloe, Cody Lee, Hayden, Ashlyn...and way too many more beautiful children who spend their birthdays in heaven. To all of these beautiful children, and to my sweet Corey, we promise you that we will be HEARD for you!  

I had a dream about Corey's birthday last week. I think it was Corey's way of telling me what he wanted us to do exactly for him on his birthday...and we did just that. 3 red and 2 gold balloons were released when Mike got home from work. We all said Happy Birthday Corey and we love you. And we watched them peacefully disappear into the heavens for Corey. It was beautiful. It was sad. It was very emotional. I found it fitting that we gave Roman both of the GOLD balloons to release for Corey, since they were NB cancer warrior brothers. Now and forever and always they will be NB brothers! Sheridan and Mike and I each released the red balloons. Click on link to see balloon release...

http://picasaweb.google.com/jody.fariello/CoreyS5thBirthday?authkey=Gv1sRgCIyUx7Wt6ouUWg&feat=directlink

I have other things I want to talk about...but...for many obvious reasons, I am not in the mood right now. Please go by and give Debra and Jim a message of love to day for Corey's birthday. cp:coreynickell. Tell them how much he impacted your life and how he changed your life. Tell them how much you enjoyed seeing that beautiful little smile or that amazing fancy footwork that Corey did so well:) He loved to dance! I am quite sure he is dancing up in heaven right now! Oh how we miss you sweet Corey. My heart aches for your mommy and your daddy and the rest of us down here missing you oh so terribly. We love you so much. More than words could ever be said or felt or seen or written. I can still hear your little voice on the phone telling me "I love you" at midnight while I was talking on the phone with your mommy. Well, sweet Corey, I LOVE YOU TOO!

God Bless the Nickell family, the Bell family and the Fariello family today and all the days to come. Jody, Mike, Sheridan and Roman Fariello:(  

June 1, 2009
Hello to our family, friends and new friends!

2700 GOLD RIBBONS were made today!!!! WOW!!!!!! What a phenominal amount of Gold Ribbons!!!!!!!! Today was such a wonderful day with everyone here. We had some new people who joined us also. We are blessed to have their hands and their help. We had so many people here today, that I cannot list everyone! I will some other update. For now though, I want to thank ALL of you who came by today to help us make GOLD RIBBONS for RALLY 'ROUND THE GOLD RIBBON. We appreciate your help more than you will ever know. We cannot do this alone, Debra and I. It is because of wonderful loving people, we are doing what we are doing. Special thanks to all of you! Our next RIBBON MAKING DAY will be on Sunday, June 14 at 1:00. Hope to see another BIG turn out!!!

I want to share a video with all of you. I have attached it as an attachment. A while back, I told you that Roman was in a video called "SAVING ROMAN". This video was shown almost 2 weeks ago at a BIO Convention in Atlanta GA. The convention was for 4 days. It was shown to over 15,000+  people. Among those at the convention, was our very own Kentucky State Governor Steve Beshear and staff members. Emily Deckelman, who helped when they shot the video footage of Roman and our family while they were here, was at the convention and she gave Governor Beshear and his staff some RALLY 'ROUND THE GOLD RIBBONS to wear and info about our family and Roman. We are hoping to hear something from his staff real soon. I want to ask him so badly about a GOLD RIBBON License Plate for our State of Kentucky. That is HIGH on my agenda in speaking with him. So hopefully we will be hearing from them real soon.

The video is not only about Roman. Many of you follow Trey Love cp:TheChemoKid. He is another cutie fighting the EVIL NB. He is currently in a study for antibody therapy at CHOP. Roman is blessed to share this video with adorable Trey Love. We pray the video raises awareness for NB so that we can fund the research we need for our Children. PLEASE, PLEASE watch the video...it is a great video and Mike and I are interviewed. Very much emotional and raw footage here in our home about the day Roman was diagnosed. Here is the link for the video...it is about 6 minutes long so give yourself some time to really watch and listen to the video.  

http://www.youtube.com/watch?v=ghlifCf54x4

Thanks to all of you for your continued prayers and support. It truly does mean the world to us. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)

May 29, 2009
Hello to our family, friends and new friends!
I first want to say THANKS so much to all of you for your beautiful and encouraging words to me as well as The Nickell family for Corey's preschool graduation ceremony. I will not go into detail, I will leave that for Debra and Jim... but all I can say is that Corey will forever ALWAYS be in our hearts, minds, actions and our RALLY 'ROUND THE GOLD RIBBON mission. Corey and Roman inspired Debra and I so much to do what we are doing. They are the sole reason for ALL of the children's voices that need to be heard.
 
Which brings me to our GOLD RIBBON MAKING...I have been so blessed to have all of you, our carepage and caringbridge families, to want to dive right in and help us make the ribbons. SO MANY OFFERS of help came pouring in to me. Many of you are not local and still want to help. I will tell you that for right now, we have enough local supporters to help meet the demand for Ribbon Orders on the website. However....if Debra and I have our way and we get bigger and bigger and Rally keeps growing like it is, we will indeed NEED all of you who are now wanting to help us. With that being said, I will let all of you know WHEN we will of course be needing your hands and your help. It's going to happen we just know it, it's just a matter of when. So, to all of you across the country who want to help us at Rally 'Round The Gold Ribbon...trust me, your time will come:)
 
I have attached a newspaper story on Corey. Corey's Grandpa (Debra's Dad) got a hold of someone at their local newspaper. Corey's life has impacted a TON of people. I was also interviewed in the story for our Rally 'Round The Gold Ribbon mission. And I was impressed...she quoted me word for word on everything I said. It is a realy great story and interview. PLEASE take the time to read it. I will have more over the weekend with a video to share with all of you. Sunday will be great because we are having another RIBBON MAKING DAY here...and we are expecting ALOT of helpers! Love and thanks to all you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)   

Link to article   

May 27, 2009
Hello to our family, friends and new friends! Right now, my dearest and closest friend and her husband are at their son’s pre-school graduation ceremony. Oh how I wish I was there with Debra right now. I can’t explain it to all of you being in my shoes, from where I stand. Debra and I became close and met well over 2 years ago. We have been there for each other for EVERYTHING no matter what time of the day or night it is.

Being in my position, I cannot tell you how it pains me that I cannot take all of this away from her. I can’t fix it with the right words to say. I can’t fix it by telling her “everything will be ok Debra”…I wish to God that I could do that for her and I can’t. I can’t and I feel so %$#@ helpless.  There are no words, no actions, no books, no direction of any kind for me to help her right now. Sometimes I can’t even help myself, much less guide her.

But somehow, God gives me the strength to keep on going for myself and for Debra. I have no ideas, no words, no time frames, no sense of time at all half the time anyway, and yet I still manage to be there for her, except this time is different. For the first time in over 2 years, Debra and I are on different paths.

We have been on the very same path up until Corey relapsed last Ocotber. That in itself made us “different”, but yet still on the same path.  And now that Corey is in heaven, it is “different” again in a far worse way. Corey is an angel now and Roman is still here with us. I cannot relate to Debra this time. I can’t even pretend to feel what she is feeling right now. I cannot ease her mind with encouraging words.  I cannot even help her feel “better”. And that feeling makes me feel horrible and helpless.

No, from where I stand, it is bad. It is down right miserable. No two other cancer moms have the bond we have. That in itself makes it that much harder to take. I for one am feeling very depressed and angry about NOT being able to help her get thru the absolute worst time in her life ever. Losing Corey to $#@! NB, is so not fair. Seeing my friend having to accept her only son’s only graduation certificate is not fair. Having 1 child die from the swine flu is enough to set our country is a tizzy of fear and panic, but losing over 3000 kids each year to Childhood Cancer is NOT!!! THAT is not fair!

I am a bundle of emotions and I feel so crappy right now. I am sad, mad, and extremely angry, mostly at our media and NB. My friend Debbie Powell told me something today when we were talking on the phone…she said I wish we could have our own talk show and talk about anything we want to talk about. I got to thinking about that, and I came up with this… boy I’d own that show in a heartbeat!!!! They want raw reality tv… that’s exactly what I would give them.  

Debra and I both have changed since our boys were diagnosed with NB. Our lives have been forever impacted and will never be the same. My only hope and prayer is that God continues to give me enough strength for the both of us. I know the road ahead is a very long one for the both of us. I already told Debra, “I am not going anywhere… I will ALWAYS be here for you”. Debra will be reading this some time tonight I am sure…Debra, I love you and know that even though we are on “different” paths now, our bond will never be broken, nor will the power of 2 amazing moms on a mission to be THE VOICE for all children with childhood cancer. I love you!  

Thanks to all of you for letting me let it out.  Love to all of you! Jody

May 26, 2009
Hello to our family, friends and new friends!
I hope all of you had a wonderful holiday weekend. We did here. Although on Sunday afternoon, I took Roman to the Take Care clinic at Walgreens to get some bug bites checked out that he got on his legs. He is now on a 10 day course of Amoxicillin because they were oozing and they were getting red. Mike and I have no idea what kind of bug bit him. A spider, a huge mosquito whatever, but he has about 6 nasty bites on his legs that scared me into taking him somewhere to get looked at. Since it was Sunday, our pediatrician was closed, and taking him to urgent care was not needed. The Take Care clinic was the perfect choice and exactly what we needed for Roman. The bites look a bit better today. It's amazing how paranoid Mike and I are over little things like bug bites...with a "normal" child, it's really not a huge deal...with a cancer child, your filled immediately with fear and the what if's start to take over your mind. But, at the same time, we welcome the "normal" times that happen to us. And bug bites are definitely normal for a kid.
 
Debra and I will be attending the Reach The Day march on Capitol Hill on June 22, 23. This is for anyone who has been touched by Childhood Cancer. I also believe that our dear friend and fellow ribbon maker Jamie Landheer will be joining us as well. It will be good for Debra and I to feel a part of something so important as this is. I will be carrying a HUGE sign supporting our RALLY 'ROUND THE GOLD RIBBON website info on it. I really haven't decided what exactly I want on it, but it will come to me. Debra, Jamie and I will be handing out a TON of GOLD RIBBONS while we are there in DC and pushing the website too! It will be good to get the awareness out there and what better place to spread it around than on Capitol Hill. We hopefully will get to meet our state reps and other officials there as well. I am looking forward to it and to spending this time with Debra and Jamie. SOMEONE IS GOING TO HEAR US...............I JUST KNOW IT!!!!!!
 
Which brings me to my next point...with the Reach The Day event and another huge NB Conference in Chicago in July coming up, and keeping up with the website orders we have been getting, we are going to be needing ALOT ALOT ALOT of ribbons made...which means we need ALOT ALOT ALOT of hands:) I am having a Ribbon Making Day here at the house this coming Sunday, 31 at 1:00. If that exact time does not work for you, we are usually making ribbons for a couple of hours until 5:00 or so. Even if you can come just for an hour, we need YOU!!!
 
With many more people coming to these ribbon making days, I have been asked many times what people can bring...well... Roman's peanut allergy kinda puts a "fear" into people about the snacks etc. that they want to bring. So I say this to you, call me. Ask me what it is you want to bring and I will tell you if it is ok or not. It's that easy. My cell # 513-476-0369.
 
Please remember men are always welcome too. No they do not have to actually MAKE the ribbons with us women, but we could use their help in cutting the ribbon, cutting the tags and counting ribbons already made and opening up the safety pins. So, there is plenty to do for everyone!!!! We need you! We need your hands! We need your time. As RALLY 'ROUND THE GOLD RIBBON gets bigger and grows (which is our hope) the more people and volunteers we will need to keep up with the demand.
 
I pray our demand for GOLD RIBBONS goes thru the roof and we have back up orders on the website!!! I pray that Debra, Jamie and I take over 5000 ribbons to DC and get rid of all of them!!! I pray that our GOLD RIBBON MISSION takes off across the country as we want it to. And I promised our sweet Corey that I will not stop...and I WON'T!!!! So, I hope to see those of you who can make it here on Sunday to help with Ribbon Making. It is always fun here with everyone and we always get major amounts of ribbons made:) Any questions or need directions, call me on my cell # 513-476-0369.
 
I do believe that is it for now. God, please keep pouring abundant love and support on RALLY 'ROUND THE GOLD RIBBON as it becomes the VOICE for our children. God please keep blessing our Roman as you have. And thank you sweet Corey for keeping Roman safe, even from the yucky bug bites. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)  
May 19, 2009
Hello to our family, friends and new friends!
We have no doubt that our sweet Corey was right with Roman today for his CT scan of his head, chest, abdomin and pelvis for 2 reasons...Roman's results were CLEAR and that Roman did his CT scan for the first time ever without going to sleep!!!! We are so proud of Roman, he is so strong! And we know it was Corey who gave him the strength he needed to lay still for the entire scan. Thank you God and Thank You sweet Corey for being with Roman today.
 
Roman did get stuck twice in the hand for his IV. He did not like it but he handled it like a trooper still. While in his scan, he held onto Daddy's hand real tight and he wanted Daddy near him. After the scan we went to clinic for a visit with Dr. Wagner and Polly. He loves seeing them!!! He was asking about them ever since he woke up this morning. Dr. Wagner examined Roman and we also did some labs too. Don't have lab results just yet. When I do, I will update about them.
 
Roman does have a nodule on the right side of his rib cage. Roman noticed it on Sunday night and told us a mosquito bit him just like it did on his neck. If all of you recall, Roman has a swollen lypmh node on the left side of his neck that we have been watching closely. He calls them his "mosquito bites". So, as you can already imagine, the FEAR of discovering this was off the charts for us. Dr. Wagner told us to just keep an eye on it for any changes and if it gets bigger. Other than the lymph node in the neck and the nodule on his right rib cage, Roman is doing JUST FINE:) He is growing up and getting bigger and taller and heavier too. Dr. Wagner wants to see us again in clinic when we come for his MIBG Scan on June 10 or 11. We will also do a urinalysis at that time too.
 
I want to thank with all my heart, Kathleen Bertline for coming to the hospital with us today and for playing with Roman so Mike and I could talk to Dr. Wagner without any interuptions. And for my Sweet Tea and for Mike's Mt. Dew. We love you Kathleen!!! And a special loving thank you to Stacey Murphy who ordered our pizza for dinner, picked it up, paid for it and even got Mike and I some "comfort chocolate" so that we can indulge in some comfort snacking. Stacey, we love you and we are so fortunate to have you in our lives. And to my mother in law, we love you Mom for staying with Sheridan. It literally takes a village!!! And Mike and I are so blessed to have the VERY BEST support team in our "Village". All of you are remarkable and we love all of you!
 
Now that Mike and I can decompress a tiny bit and breathe again until June's MIBG scan, we can concentrate on missing/grieving Corey and working on RALLY 'ROUND THE GOLD RIBBON like never before. The position we are in with Debra and Jim is extremely difficult and so not an easy place to be in. Our families are so invlolved that even today Debra's heart was with us at the hospital for Roman's scan. Even though Debra's missing Corey is at the very heart of her being, she was still filled with fear and worry for Roman.
We love you Debra and Jim and know that your beautiful son helped Roman today!!! I have a beautiful amazing story to share with all of you soon, but just not right now. Later Update I will fill you in on the story.
 
Don't forget the next RIBBON MAKING DAY will be on Sunday May 31, at 1:00. New people, now is the time to come and give us your hands for a couple of hours. I will post soon again about making Ribbons as time gets closer.
 
Thank You God and Corey for keeping Roman safe. One moment at a time. One day at a time. Sometimes even one breath at a time, just like today for all of us. Love and thanks to all of you for your continued support and prayers for our son and our family. From where we are, that feeling is amazing!!! God Bless! Jody, Mike, Sheridan and Roman Fariello:)

May 18, 2009
Hello to our family, friends and new friends! I first want to apologize to many of you who have sent me emails/carepage messages. I have been really bad about getting back to all of you and replying back. If you know me, that is NOT me at all. I am still very much in a bad way, out of sorts, and obviously not myself. My brain does not work hardly at all anymore either.

 Each time I get on to do an update, I feel like I am in a really bad dream. A never ending nightmare of the most horrific kind. It's very difficult to do updates now. Things that were simple before, are now very difficult. I keep thinking about Corey. Thinking about what I told him. What I promised him... about SOMEONE HEARING ME! AND SOMEONE WILL HEAR ME!!! I love you sweet Corey! We love you!

Today, was an AMAZING RIBBON MAKING DAY in memory of Corey!!!! We made over .......................1700 GOLD RIBBONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I want to thank the following people for their support and love today....Derney and Duppy, Uncle Steve, Aunt Coleenie and Kathleen, Aunt Jenn and Uncle Andy, Kathleen and Haley Bertline, Jamie Landheer, Marsha and Dave Benjamin, Stacey Murphy, Tracy and Abby Whitney and Lisa Turner.  And a very special thank you to our new RIBBON MAKERS...Paula Brock, Jennifer Hendren and Mikki Schaffner...it is because of giving people like you who want to make a difference, DO MAKE A DIFFERENCE!!! Thanks to Mikki Schaffner also for the wonderful amazing talent of taking such gorgeous pictures today of our Ribbon Making. I cannot wait to see them:) We love you Mikki!

Again, I know I speak for Debra as well as myself, we are surrounded by the most loving support team ever! I love all of you! And I know Debra does too.

I am going to do another Ribbon Making Day on SUNDAY, MAY 31!!!!

Mark your calenders now:) The more we make, means that many more ribbons are getting out there to be noticed!!!!!! Orders from the website have been steady...and I like it!!!

So, all you men out there who want to come with your wives, we have jobs for you as well. Cutting ribbon, cutting tags and counting. And, by all means, bring a friend or two. We LOVE getting new people to help us. I hope to see some new faces in 2 weeks...we'd love to have your hands!!!

I know I don't have to tell all of you this, but in case you forgot, Tuesday is Roman's Cat Scan of his head, chest, abdomin and pelvis. We have to be there by 11:30 and Roman's scan is set for 1:00. After Roman wakes up, we have an appt. with Dr. Wagner in clinic. As soon as I get results, I will post them. I am hoping to have results by evening. Mike and I feel that we have not had enough time to even breathe with sweet Corey earning his golden angel wings... and now we are already right back on the rollercoaster ride of scanxiety!!!!! Not even enough time to take in everything, digest everything and we are right back in the fight with Roman.

Did I mention that I HATE NEUROBLASTOMA! I DEFY it. I DESPISE it. I am beyond angry with it. But it is NOT taking my focus away...RALLY 'ROUND THE GOLD RIBBON is my focus. And apparently, the focus of all of our supporters that help make the ribbons happen:) Whether that be with actaully making them, or financially supporting us so that Debra and I can press on with our MISSION. We WILL be heard!!!

Enjoy Pics of Today and Roman being Silly....

http://picasaweb.google.com/jody.fariello/RibbonMakingRomanBeingSilly?authkey=Gv1sRgCNqI95PTw6mGcw&feat=directlink

Sweet Corey, please keep giving me the strength to continue on and be the voice for the children. God, please keep blessing our Roman as you have. Thanks to all of you for helping us today and always...we cannot do this alone. Love to all of you! Jody, Mike, Sheridan and Roman Fariello 

May 15, 2009
Hello to our family, friends and new friends! I don't even know where to begin...that's a first for me. My brain is fried and I have never been so emotionally exhausted before, ever! I can't even begin to tell all of you and share with all of you my pain. Mike's pain. And yes, even Roman and Sheridan's pain with all the questions that keep coming up about our sweet Corey. I look at his picture and he is hugging Roman. Then, I think, AN ANGEL is literally hugging Roman.

The fear that lies ahead for Mike and I is off the charts, if that is even possible. The fear for Debra and Jim as they attempt to begin a life without Corey...well, the words don't come easy for me right now. The past 2 days for Mike and I have been a bit of a whirlwind and a blur. To say that things are "difficult" for us is an understatement. We don't really know how to "go on" without Corey right at the moment...specially with Roman and Sheridan. Believe me, Roman at his very young age has shown ALOT of interest in Corey and where he is now. Roman's interest is with the way he acts and his expressions. Sheridan is the one who asks the questions. Mike and I only pray we are giving them the best answers we can give them...without scaring Sheridan because of Roman.

The services for sweet Corey yesterday were beautiful and gut wrenching at the same time. Debra and I have talked as we usually do, and we love each other more than words. No 2 cancer moms could possibly love each other anymore than we do. It was very important that Debra and Jim knew that Mike and I were the very last people to see them for Corey's visitation, and the very last people to see them last night after the service and gathering afterwards. We want them to know that when life goes on for everyone else around them, we will still be right here for them. In 1 month. In 3 months. In 5 months. A year. However long, we will always be here for them.

The only bright spot was that we were blessed to have Mimi Avery cp:JuliansWorld stay with us. Debra wanted her here, and she was here for Debra and I. Jamie Landheer, we cannot thank YOU enough for your frequent flyer miles for Mimi. What an amazing person you are for wanting to help get Mimi here for Debra (and me too). Mimi stayed here at our house in Hebron KY. We so enjoyed having you Mimi. We love you and the kids miss you already.

I do have scan dates for Roman. I know, horrible timing. Roman's CT Scan is set for this coming Tuesday at 1:30. And right after, we have an appointment with Dr. Wagner. We are hoping to have results by the evening if we have our way. Tthere is NO WAY waiting is an option. I am quite certain Dr. Wagner perfectly understands that from Mike and I. 

Then, on June 9, Roman will have his MIBG injection. June 10, will be his MIBG scan. Then June 11, will be the third day if needed for MIBG. 

OK.......This coming Sunday, we are having a RIBBON MAKING DAY! We have had ALOT of orders on the website. We need to make ALOT of ribbons to fill all the orders, replenish our supply and make even more for cushion. So, around 1:00 on Sunday...if you want to come and help make ribbons for Corey, c'mon and let's get to work. We have ALOT to do. Remember...new people welcome all the time. Bring a friend too! We need all the hands we can get. Remember...it's for Corey...so that no other family has to go thru what Mike and I just witnessed the past 2 days. All you men out there....we have jobs for you as well like cutting the ribbon and tags and counting. 

I could share much more with all of you, but I am drained. I am grieving. I am crying alot in between trying to be "normal". I am scared. More than scared. I am a mess. I am strong when I have to be...and when I'm not, I don't.

Please pray for Jim and Debra, both of their families and for Mike and I and our families. This is a road I pray you NEVER have to walk down. Kiss your kids tonight for Corey. Let them paint and get all messy, for Corey. Let them eat yummy ice cream where you normally don't let them eat it, for Corey. Let them stay up a bit longer sitting with you on your lap, for Corey. Even though you don't feel like reading to them tonight, do it for Corey. Hug them 'til they say "Mommy, your squeezing me", for Corey. We love you sweet Corey!

God, please give ALL of us the strength to go on, one moment at time. One foot in front of the other.  And God please keep blessing our Roman as you have. Love and thanks to all of you for your support. Our hearts know you love us and we love you back. Jody, Mike, Sheridan and Roman Fariello:(  

PICS of Butterfly Walk, Mimi's stay and Corey's Balloon release... http://picasaweb.google.com/jody.fariello/CoreySAngelWings?authkey=Gv1sRgCJ6Jt9-IztCspwE&feat=directlink

May 5, 2009
Hello to our family, friends and new friends!

I wrote this late last night very early this morning. Please remember....I am a very emotional, sad, mad, angry cancer mom right now letting out ALOT of stuff. I must let it out. Debra, my "venting" is for you. I love you!

It is very quiet now. I am sitting alone and I am with my thoughts. My heart is heavy and I am in pain for my dear friend Debra and her husband over Corey. I cannot stand the thought of losing Corey. I cannot stand the thought of losing Roman. And with Corey, it is hitting home just a bit too close. As I am writing this somewhere out of anger, I do it for my fellow cancer warrior mom Debra. Because I know she is more than angry. I know, because I am her partner and fellow cancer mom. What I don’t know is why this is happening with our sweet Corey. That is one question I may never know the answer to.

I realize how EVIL NB is. It has claimed TOO many young lives. It has literally taken kids away like it was nothing, like it was no big deal, nothing at all. Without warning. Without showing any signs that it’s going to stop. WHEN will it stop! Will it stop tomorrow? Will it stop the next day? Or the next day after that?  How many beautiful kids have to DIE until the public rages war against CHILDHOOD CANCER like they do other dangers that our kids are faced with!!! Why must it be so &%$# difficult to get attention for our dying children? Why is there more coverage on the television about a stupid flu virus that has claimed one life when Childhood Cancer takes 3000 lives a year? WHY? Can someone PLEASE tell me WHY!!!! Why is it that the only connection to childhood cancer that the general public is aware of is Leukemia and St Jude’s Hospital? Why is it that no one has ever heard of Neuroblastoma, Medullablastoma, Ewings Sarcoma, so many more? Why is it OK for the general public to see on television bald headed adults go thru chemo and be sick but not our children? Why do people still turn their heads? HOW can people still turn their heads? Why is there more money devoted to adult cancers and not childhood cancers? Why is THAT even acceptable? If we were on a boat that was sinking, and there were adults and children on board, wouldn’t the children get rescued and saved first???? WHY then is CHILDHOOD CANCER any different??? WHY? Why are we as a society not putting our children’s lives FIRST? Why is our society so wrapped up in the Obama’s romantic date night when my sweet Corey Nickell is lying in the PICU fighting for every breath he takes? And, FYI…. Corey is NOT the only child fighting for his life tonight as I am typing away.

What is it going to take to wake the general public up??? Is it going to take a pandemic…I got news for you people…newsflash…CHILDHOOD CANCER is already at a PANDEMIC level 6 and BEYOND!!! And spreading like wildfires!!! It is already way ahead of the swine flu!

What about all of those inventors on that show with the infomercial guys like Billy Mays…why not have them put all of their heads together and FIND A CURE instead of some stupid little gadget that is overpriced and that nobody needs. Or, what about if Obama put up 1.5 BILLION dollars for the first “person/people” to find a cure for ALL Childhood Cancers???? Why not present that to Congress instead of the stupid swine flu research package??? Where is the STIMULUS MONEY for our CHILDREN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Why is it that people think just because Roman “looks” or “appears” to be OK, that he is OK when he is not??? He is not safe. Roman will NEVER be safe. No child with NB will EVER be safe. No child with any Childhood Cancer will be safe. When is it going to end??? When is enough ENOUGH?????

I am very angry right now. Maybe I should be crying. Maybe I should praying. Maybe I should be doing something else other than getting angry at something I have no control over. I know that Debra has the same spark of fire that I have when it comes to all children fighting for their lives. I just didn’t know that we would be facing what we are facing with sweet Corey right now. Scenarios like that only happen to other NB families that we follow on carepages. That only happens to other caring bridge families that we follow. Little did I know that it would be happening to one of our very own boys.

Please, PLEASE feel that spark of fire that Debra and I have together for Childhood Cancer. It’s the kind of spark that makes you want to make a difference and BE the difference for our children. I will be the difference for sweet Corey and Roman. Until things change for our children, I WILL NOT STOP! ANYONE OUT THERE CARE TO JOIN ME??????????????????????????????????

Please pray for the Nickell Family and both sets of grandparents and sisters and extended family members. And while you are praying, throw a prayer in there for Mike and I too and our families, for this is extremely difficult on us as we travel along side of the Nickell family. Watching them live out our biggest fear with Roman.

Corey Nickell, we love you so much sweetie!!! Roman and Sheridan miss you very much! God, please give ALL of us the strength we need to be strong for the Nickell family. Love and thanks to all of you for your support and prayers. Jody, Mike, Sheridan and Roman Fariello

May 3, 2009
Hello to our family, friends and new friends!

Today, our turnout was not what I had hoped for with Ribbon Making for our sweet Corey. I want to thank Derney and Duppy, Aunt Coleenie and Kathleen, Anne Allen, Stacey Murphy and Todd and Tracy Whitney and of course my wonderful husband Mike. We did indeed crank out 1100 GOLD RIBBONS with a small crew of people to work with. Corey, we love you so much Sweetie! 1100 GOLD RIBBONS were made in your honor today buddy!

I also want to take this time to personally thank Kathleen Bertline who has been filling all of the incoming ribbon orders for me since I have not been myself lately. Rally 'Round The Gold Ribbon had a HUGE amount of ribbon orders come in this past week. We love you Kathleen! And a HUGE congrats to Jamie Landheer, who ran in the Flying Pig Marathon today. Her part of the race was 8 1/2 miles!!!! She did it and she said her inspiration when she was feeling tired was sweet Corey and our Roman. Jamie we love you and congrats!

I know MANY of you were not able to come today for one reason or another. Never fear, I will be planning another day soon. At the moment, I have no idea when that will be. With the Butterfly Walk and Mother's Day next weekend, I just have no idea as of now.

Please keep praying for the Nickell family. They need your prayers and support now more than ever.

God, please keep Corey safe in your hands. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello 

April 30, 2009
Hello to our family, friends and new friends! I want to start off by THANKING so many of you who have donated platelets and blood in honor of Corey. We still need them for so many lives who depend on them each and every day to live. If you can, please go and donate to save a life!  

Corey is one tough little guy! He is and remains in the PICU and is getting IV fluids, nutrition and electrolyte replacement. He had his foley cath removed today. He is still very swollen and still has his chest tube in for draining. His counts are not the best due to the chemo. And, they think he is trying to fight something off like an infection of some kind. He is more alert today, watching cartoons but not really playing. His pain meds have been adjusted up the past couple of days to make him more comfortable. They want to move him to the 5th floor (Hem/Onc) but there is not a bed available at this time. That may change though as time goes on today if someone else goes home.

Debra and Jim are surrounded with such loving support from both sets of grandparents and family members. They are also surrounded by all of you who keep sending them such amazing messages of support for Corey. To me, the days are so very long waiting to hear from Debra. I cannot even imagine how long time is for Debra and Jim. We love you guys and are praying for Corey each and every day non stop!!!!!

I went to the doc this morning for my post op check up. It took literally 3 minutes and I was out of there. He took off the tegaderm, and no it did not hurt. He said it looked good and to give me 1 more week of "taking it easy" and I should be good to go next week. He also wrote me a script to have my blood tested for TSH and T4 levels after June 30. That will give me some time to heal before I get tested. That is it. All done!

I wanted to share a fear with you I experienced this morning. I know this is not a big deal to all the non cancer parents out there, but to Mike and I... it is our life. Roman was laying on the floor drawing on paper and writing names of family members again. Out of blue he said to me "Mommy, my leg hurts". Well, as you can only imagine, with the news of Corey, my stomache immediately tunred upside down. I had him point to where it hurt and he showed me. His right thigh in the front. So, of course I called Mike and told him what happened. He told me that last night Roman had bumped his leg on our bed trying to climb up in it after his bath. So, you see, something so simple yet so very scary. Even though I have an explaination of why his leg hurt, it still did not take away that fear for me. I know all too well that is where NB likes to come back... in the legs, arms and the skull. So, needless to say, I had enough "fear" for one day today. I have been worried sick with Corey, I cannot handle any more "fears" like that with Roman.

Also, this Sunday at 1:00, I am having a RIBBON MAKING DAY here at the house! ALL of the ribbons we make that day will be even more important because of Corey. So, if you are able and willing to use your hands and you feel that you want to help Corey, c'mon over and we will put your hands to work!!! Some of you have already told me you were coming and I look forward to seeing everyone on Sunday! Corey, WE LOVE YOU so much Buddy...KEEP ON FIGHTING SWEETIE! YOU ARE AMAZING! 

God, please give Corey the strength to handle the chemo side effects and to help his little body heal. God, please keep blessing our Roman as you have. Love to all of you and thanks so much for your ongoing support! Jody, Mike, Sheridan and RomanFariello:)    

April 27, 2009
Hello to our family, friends and new friends!
As many of you are praying constantly for Corey cp:coreynickell there are other things you can do to help right now. The very first thing you can do is donate blood and platelets. Corey needed platelets twice yesterday. The need to save a life is there. So, go to your local Hoxworth center and donate in Corey Nickell's name. I cannot stress to you enough the need for blood and platelet donation. The need for platelets is even greater. So, do your part for Corey, Debra and Jim and donate in honor of Corey right now.
 
The other thing you can do to help is to put your time and energy into helping Debra and I with our mission... Rally 'Round The Gold Ribbon go to www.RALLYROUNDTHEGOLDRIBBON.org for more info. But even if you just spread our website around to everyone in your address book, you are helping spread awareness. And take that one step further and order some ribbons!!!!!! Pass them out to your co workers, family, friends etc. Wear them proudly for Corey, Roman and all of the children affected by Childhood Cancer. Debra and I cannot do this alone. We need YOUR help!
 
Also, coming this Sunday on MAY 3, I am having another RIBBON making day here at the house at 1:00. If you have a couple hours or only one hour, we can get alot done with a little amount of time.
So, CALLING ALL RIBBON MAKERS......WE NEED YOUR HANDS!!!!!!!!!!!! New people are always welcome. Bring a friend or 2. We just got an order for 1000 GOLD RIBBONS before May 15 for a walk in Toledo Ohio across into Michigan. This man wants to pass out our GOLD RIBBONS to everyone he meets along his path. Now that is what I call spreading the word!!!!
So, if you are free on Sunday for an hour or 2 and want to feel like you are a part of something bigger than yourself, then c'mon over and give your hands and your time for our sweet Corey and the too many kids just like him out there. This is one of those times where people feel helpless and want to do something. Now is your chance to and it would make Debra and Jim very proud.
 
I did the Corey update today on his carepage for Debra and Jim. I wanted to take this opportunity to guide and direct people who feel the need to do something. Debra and Jim have everything they need at the hospital. They have their families with them all the time and plenty of help when needed. They don't need food right now or anything else. Corey is not allowed to get plants, flowers, balloons or toys for fear of any infection and also hospital rules. PRAYERS are what they need. Trust me, more than anyone else out there, I feel helpless. I am a fellow cancer mom and I cannot do anything except MAKE GOLD RIBBONS!!!!!!!!!!!!
 
Roman and Sheridan had a blast at the carnival on Saturday. I will post pics on a later day. I am doing fine as well. Alot of you have asked me about my surgery and if there is anything you can do for me. Well, PRAY as you have been. And, come help us on Sunday if you are able to and go donate BLOOD and PLATELETS. And Jamie Landheer, we'll take some of your yummy peanut free Choc Chip cookies:) I so appreciate all the love and support for me. But more importantly, the love and support you are showing the Nickells right now. God, please keep Corey safe in your hands. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) 
April 25, 2009
Today is April 25th2009.  Two years ago today, Mike and I were told Roman had a deadly cancer called Neuroblastoma Stage 4. I had a special something that I put together to mark the anniversary day. However, with the news of Corey cp:coreynickell , I really don’t feel like it now. I will save it for another day. This morning, Roman was sitting at the table. He has been writing his letters and numbers for the past 2 days. He has been wanting to write the names of members in our family. Amazing isn’t it, that of all days, today, Roman is writing! I just feel that is so significant for all he has been thru. 

When Mike and I were literally thrown into the CHILDHOOD CANCER UNDERGROUND way of life, we never knew how it was going to change our lives the way it has. We have lost some people in our lives when Roman got diagnosed. I am sure not intentionally, but we did. Some people just don’t know how to deal with such horrific news. On the other hand, we were flooded with the love of strangers, and friends who now, I would never let go of.  

I think back to that time, I had no idea that God was lining up people in our lives for a lot of different reasons.

Meeting the Nickell family, was by far the most amazing beginning to our journey. I met Jim in the parent lounge one night and we talked. Then I met Debra. We had no clue meeting that night would be the start of such an amazing bond. Through both boys’ rounds of chemo, Debra and I started to talk and connect. We really talked a lot right before Corey’s transplant. Since he was the first to go, I got to sit back and watch and learn so much from Debra. I remember being so scared for them. As Mike and I knew from all of our reading material, they were about to go down a very scary path. That very same path we would go down just 2 months later.

I remember going to see Corey after his counts started to come back up after his transplant. He had his yucky skin rash still from lovely chemo and he was a bit bloated and puffy too. He was not walking any because his legs were not being used, for he was in bed for about 2 months straight. I looked at him and was scared for Roman immediately. I did not let on to Debra that I was scared, but I truly was. Although looking back now, it was a good thing for me to see Corey like that, it prepared me for when I had to see Roman in the same way.

Since then, Debra and I have connected on a level that not too many people ever get the chance to.  We are cancer moms. We have been cancer moms for 2 years now. We will always be cancer moms. The difference now is that we will ALWAYS be cancer moms TOGETHER. When Debra and I started Rally ‘Round The Gold Ribbon last September, we had no clue that one of us was about to be thrown into the RELAPSE world. The very same world that Debra and I both feared for our boys. Since then, nothing has ever been so important than making GOLD RIBBONS. Making ribbons as we do with so many amazing people wanting to make a difference.

I find it very fitting on Roman’s anniversary day, to list some ways that you can help.

  1. If you are able, please go donate blood and or platelets. Corey has needed them a couple of times already. So many lives depend on them daily. Young lives. So if you can, please go donate and help save many lives.
  2. Join us for the Butterfly Walk on May 9th. www.butterflywalk.org You can join the Rescue Roman Team or the Courage for Corey team.
  3. You can either donate money or even better your time to help us with Rally ‘Round The Gold Ribbon. I know so many of you already come help us all the time. We truly appreciate it. You will never know ho much we do. If you can’t come help make ribbons with us, a small amount of money goes a long way for us. Our overhead is postage, envelopes, baggies, safety pins and ribbon.
  4. Sign the petition for Childhood Cancer… People Against Childhood Cancer (PAC2) is an amazing online “family” who raises awareness using it’s very own members. Founded by a father, Bob Piniewski, who lost his son Alex in January ‘08, PAC2 has over 3000 members and growing. Debra and I are very proud to be members of the PAC2. http://curechildhoodcancer.ning.com
  5. Whatever you do in the future, please do not turn away and don’t turn your back on our children with cancer. You can’t anymore. We as a society can no longer just sit back and let children die. Corey should not be where he is right now. Our children deserve so much more than they are getting. When in doubt, and if you have a question about where to put your time, your energy and possibly your money, ask me. I will point you in the proper direction.

It has been a very long two years for us. So many of you have supported us every step of the way, for that Mike and I are so blessed. I want to point out the not so obvious here for a moment. No one knows about Anne Shultz. Anne found us through the Enquirer story I sent in on Lauren being our Hometown Hero. She sent me a message on Rescue Roman.  Anne has been praying so very hard for our Roman ever since. She sends me emails to remind she is still praying. Praying for Corey now too. People like Anne are so special. A perfect stranger. Anne, we appreciate your support over the past 2 years.

Another perfect stranger who walked into my life and Debra’s life, is Kathleen Bertline. Kathleen found us on Rescue Roman’s website. She left me an email expressing interest in helping us. She came down and met us. She lives in the Kenwood area. She is a mother and a wife. When she found us and read about Roman, she immediately wanted to help in any way she could. So, she says to me back then “how could I not help” and I say back to her now “you are an amazing person and we are sooo very blessed to know you and have you in our lives.” Kathleen is helping a lot with Rally ‘Round The Gold Ribbon. She has helped me mail orders out in place of Debra. Even now with my surgery. Kathleen, we love you and thank God you came to us. We are so touched by your willingness to just dive right on in and start helping. More people in this world need to be like you. Your husband and daughter should be so very proud of you.

Another beautiful person that has touched my life and walked right in is Jamie Landheer. Jamie is not a stranger to the Neuroblastoma world. She is friends with the Monroe family who lost their beautiful daughter Marissa last June to NB. I have been blessed by Jamie in so many ways. She has a beautiful gift…she wants to make a difference in so many ways. She supports so many families like mine and Debra’s. Jamie makes dinners, amazing peanut free chocolate chip cookies and she does a lot of fundraising for NB. She offers support, knowledge and even frequent flyer miles if needed. She sends gifts to the kids and their families and all the while being a wife and a mother of two little boys who works a full time job. She has helped make ribbons so many times and has donated money to our cause. She is so full of energy and life and wants to find a cure for NB. She has seen first hand what it does to families like the Monroe family with losing their beautiful daughter Marissa. Jamie, for whatever, reason, I am so blessed by knowing you and having you in my life. I know Debra feels the same way. Thank you for ALL you have done and continue to do for families like mine. You are a blessing to so many!

These 3 amazing women Anne, Kathleen and Jamie, are what this world needs more of. If anything, maybe all of us could stand to learn something from them. It’s not about you all of the time. It’s not about your house or your cars. It’s not about who’s got what and who makes the most money. It’s about giving yourself to something that moves you. It’s about giving your time. It’s about giving your prayers unconditionally and faithfully like Anne does and has done for 2 years now. All of us should follow in their footsteps. The world would be a much better place. So inspiring all 3 of them!

My friend Anne Allen just called me. She wanted to touch base with me for today being Roman’s 2 year anniversary. She told me that she knew it would be bittersweet with the news of Corey. And bittersweet it is. She wanted to also remind me that she is so grateful that Roman is NED and what a blessing that is in itself. She is so very right. Mike and I thank God each and every day for Roman remaining NED. All of us know that with NB it strikes at any time. Without warning. It is silent. It is deadly. IT MUST BE STOPPPED!!!!!

Mike and I are very grateful for all of your support and prayers over the past 2 years.  What an amazing journey for us and one that I am honored to share with all of you with my Roman updates. I know as my partner Debra is literally fighting for her son’s life, that she would want Roman on TODAY of all days, to go out and be a “normal” little boy and celebrate his life and his journey over the past 2 years. And we are going to do just that. Roman and Sheridan are going to go to the school’s spring carnival on such a beautiful day! Debra, Jim and Corey, we love you and are thinking about you constantly. God, please keep Corey safe in your hands. Let the chemo do what it needs to do. And God, thank you for blessing our Roman over the past 2 years! Please God, don’t stop blessing our Roman as you have. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello

April 23, 2009
Hello to our family, friends and new friends!
I know by now many, if not all, of you know what is going on with our sweet Corey. And literally thousands and thousands of people across our country and across the world are praying for him. I feel like this is still not happening. It's not supposed to be this way at all. This is not God's will. God would not let this happen like it is happening. I am a very strong believer in things happening for a reason. Some how though I cannot even fathom the reason for this to be happening to Corey. I really think God is exhausted of hearing from me. I am sure he is saying to himself  "Oh no, not HER again!" I still have not lost my sense of humor. Thank God for my sense of humor. It's one of the things that keeps me going.
 
Another thing that keeps me going are the many friends I have supporting me to be strong for Debra and the Nickell family. I am strong, when I need to be. And, when I am with Debra or we talk, for the most part I am very strong with her and for her. I am hers at her beckon call. She knows that.
 
The friends that I have, Debra's friends as well, are so amazing. I am truly blessed by them. We are truly blessed by them. To my dear friends Anne Allen, Deb Powell, Kathleen Bertline, Jamie Landheer, Tracy Whitney it is because of you that I am able to be there for Debra. I know that at any given time, day or night or middle of the night, I can count on you and call you and cry with any of you.
 
Yesterday, I got the most beautiful flowers... not from one friend but 2 friends. Jamie Landheer and Tracy Whitney came by to see me and check in with me. They wanted to brighten my day. And they sure did. I took a pic of the flowers. They are gorgeous! I so appreciate all the friendships I am blessed to have. Specially, at this most difficult time. It's real nice to know that I have MANY places to fall:) To see my beautiful flowers click on the link below...
 
 
Tomorrow, sweet Corey and I both will be "sleeping" at the same time. I am pretty sure that his MIBG scan will be at 1:00. My surgery is at 1:00 for my thyroid. It kills me to know that I cannot be with Debra tomorrow for this very important scan. She knows that I would if I could in a heartbeat. Hopefully, I will be able to come home after surgery tomorrow. I know the very first thing I am going to ask when I wake up is about Corey's MIBG results. I will be worried until I know what is going on with him.
 
So, I need prayers for sweet Corey tomorrow for his MIBG scan. Prayers also that my surgery goes as planned and I am able to come home right afterwards. Mom will be here with the kids. If anyone wants to check in with her here at the house, she will know what is going on with me and probably Corey too as soon as we know something.
 
Thanks again to so many of you praying for me through out all of this with my dearest friend Debra. Debra, Jim and Corey, we love you so much more than words can express. Thanks to all of you again for your messages and emails. It gives me stregnth. God, please keep Corey safe in your hands. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello  
April 21, 2009
Hello to our family, friends and new friends!
I know...there are a ton of you who are thinking how can I even be on the computer right now. Well, let me tell you that I wanted to get on here and THANK so MANY of you for your loving support for me, our family and the Nickells. I have been gone most of the day. Debra called me first thing this morning and gave me the horrific news. I immediately told her that I was hers, at her beckon call for anything. So, she asked me to come over to the house and help her clean up a bit. So, Derney came to the rescue for my kids to free me up so I could go be with Debra today. Mom, we love you and thank you!
 
I needed to see Debra and hug her and hold her tight. The kind of hug only a fellow cancer mom could give to another cancer mom. I felt helpless, just like everyone else out there with the news of the day. So, I was glad to go and do SOMETHING! Then, as the day went on, our dear friend and fellow ribbon maker Kathleen Bertline came over and brought us some Sweet Tea from McDonalds. Thanks Kathleen! She helped straighten up a bit too and played with Corey. Debra is getting sooo  much amazing support from fellow NB moms across the country who have been where she and Jim are right now. I gotta tell you, our carepage/caringbridge families are the very best medicine. I was bombarded with loving support with emails and private messages on Roman's carepage. I have read every single one of them and I love all of you and thank you so much for being there for me and Debra. It is with support like that, that I am able to be such a strong person for Debra right now. 
 
The bond we share is one that is sooooooo special. I feel very blessed and fortunate to be Debra's "wingman". But ALL of us cancer moms, have a bond that is so tight. So amazing and so full of everlasting support and understanding that goes above and beyond any other. It is a circle we are in, and each one of us completes a portion of this HUGE circle. I got to talk briefly to Valisha Houston. If all of you have been following us a long while you remember sweet ^^Victoria Love Houston^^. We met the Houston family at the Barrett Center while Roman was going in for his last few radiation treatments. Anyway, Valisha talked to Debra today and I got to talk to her too. Valisha, we look at sweet Victoria's beautiful face each and every day on our refrig. She is definitely one of the many reasons why we make GOLD RIBBONS. It was so wonderful to talk to you today and THANK YOU for being there for both Debra and I. Just soooo many moms wanting to connect with Debra. The support is awesome!
 
The rest of the week, will be very busy for the Nickells. I know everyone is praying for them....I could not thank you all enough for your prayers and support right now at the most difficut time in their journey. I will try to keep everyone posted on things as best as I can. Debra, Jim, Corey and family...you literally have THOUSANDS praying for your sweet Corey and your family. We are right behind you every step of the way. We will never stop! We love you guys! And I love all of you Roman and Corey supporters out there. God, please keep Corey safe in your hands. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello 
April 20, 2009
Hello to our family, friends and new friends!
Please please all of you Roman supporters out there, I need you to pray for the Nickells. They need prayers now more than ever. Please read the following update my closest NB mom Debra, just posted on Corey's carepage... 

I am on here pleading for more prayers. It is worse than we thought over the weekend. Corey has extensive disease throughout his skeletal system (it’s in most or all of his bones) he also has multiple lesions in his liver that are “too numerous to count”. I sobbed this morning and now I am completely empty. I feel like I can’t breathe. My legs feel like rubber and I am nauseous. I need support now more than ever. I am typing this through my tears and I don’t know how I could possibly have any tears left. The fear of losing Corey is unbearable. This demon is taking over his body and I feel helpless. I prayed over Corey for half an hour before I let the grief take over and now I am leaning on all of you for strength. I need to be strong for Corey but for the first time in this battle I feel defeated and helpless. I still have hope and faith. If anything those are the two things that remain the strongest.

Lord Jesus please hold Corey in your hands, protect him and heal him here on earth. Please do not let this demon take my baby away from me. I cannot live without him. Please guide the nurses and the physicians to get Corey’s treatment started quickly. Please allow his next treatment to be guided by your hands so that it will completely heal him. I know you have a plan for Corey and I don’t know what it is but please let him grow into a man. Let me nurture him and raise him. I know he will do great things in his life. Please give him that chance. Please let him beat this demon with your healing hands. AMEN

Debra

Please God, hear Debra's prayer.

Jody 

April 19, 2009
Hello to our family, friends and new friends!
Today for our ribbon making day, we had a different focus. It was a bit different. Different because we knew the ribbons that were being made, were for our sweet Corey. We made 1038 GOLD RIBBONS!!!! So amazing! I want to personally thank the following amazing people... Derney and Duppy, Coleen and Kathleen, Debbie and David Powell, Marsha Benjamin and Jamie Landheer. Without the support of these people and many people like them who help us all the time, we could not do what we are doing.
 
It was very hard today without Debra and Corey being here. They were here the last time for our ribbon making day just 2 weeks ago. And now I think how much has happened in just a very short time for them. I wanted the RIBBONS to be made today. Debra wanted the RIBBONS to be made today. Maybe I needed to be surrounded by people with the news of Corey. I am a people person. I wanted things to remain somewhat "Normal" with the news of Corey... and "Normal" meant to me to keep on doing what I do best...getting together a group of loving people to help us MAKE GOLD RIBBONS and keep on MAKING GOLD RIBBONS!!! Today's Ribbon Making Day had even more of a purpose...to focus our energy because of Corey and put it into spreading the awareness for CHILDHOOD CANCER. To know that Debra and I are surrounded by sooooooooooooooo many wonderful people that support our mission and our families, makes my heart so full and I know it does for Debra too. We could not be doing this without all of your help.  So, thanks to all of you again who continue to help us. To those of you who want to help us from out of state...your time will come if our mission goes the way I want it to go:)
 
It will be a rough week for the Nickell family. They will, yet again, be forced to make tough decisions without knowing what the outcome will be. Talk about scary. Treatments, side effects, where etc. All of it is just horrific and all having to be made with maintaining somewhat of a "normalcy" for Corey. Please pray the hardest you have ever prayed before for Corey, Debra and Jim. I know they want all of us to storm the gates of heaven and talk to God. Debra, we missed seeing you and Corey today. Out hearts and our minds were constantly on your family. We love you and we are here for you 24/7 endless!!!
 
With the news of Corey, I have not talked alot about Roman. Polly, our nurse coordinator, called me one day last week and told me that Roman's scan dates would have to be changed to a later date. The reason was so ridiculous I don't even feel like telling you why. They wanted to move them to the 2nd week in June. Well, OBVIOUSLY with the news of Corey, WAITING for ANY scan is out of the question for us. I am going to contact Polly and let her know that we are NOT going to wait until almost the middle of JUNE for scans. I am going to try to even get a CAT scan done in May and then if everything is ok with that scan result, I would not mind waiting for the MIBG scan to be done a couple weeks later. But NOT all of his scans waiting that long. OUT OF THE QUESTION. I will let all of you know when I know something.
 
I just want to remind all of you about a little something called REALITY! I know people's lives are hectic. I know people have financial issues, house issues, work issues, family issues, issues with kids, etc.......but whatever is going on in your lives right now....believe me when I tell you this... it is really NOT THAT BAD! It could be MUCH worse.  It will be ok for you. It may not go the way you want it, but it will be OK for you. You will prevail and move on. Your life may be somewhat inconvenienced by all of the above mentioned, but it is not life threatening. You will live thru it. You will be OK. You will move right along life's highway as you were.
 
For my dear friends, the Nickells, they don't have the comfort of knowing that things will be OK with their son. They don't get to know that everything will be OK with Corey. They don't know what road to take as far as treatment, which one will be less life threatening to Corey and with less side effects. They don't get an "off day". They don't get a "break". They are too busy deciding major life changing decisions for their son's survival and his very young life. So please do me a favor... when you think you got it bad and things aren't going according to planned in your own little world, not going your way at all, think about them. Think about sweet Corey fighting for his life. I can almost bet you will think your problems are NOT SO MAJOR and NOT SO IMPORTANT anymore.
If Corey's relapse is NOT a reality check for you, I don't know what would be or could be.
 
Thanks for letting me let out some anger. I have cried alot since Friday, Friday being the worst of it. Cried til I had no tears left to cry. Now, I am just plain MAD!!! I don't know what the next few days will bring for my dearest friend fighting for her son's life as we know it...but I can assure you one thing...God will be tired of hearing of my voice. Debra, I love you! God, please keep Corey safe in your hands. God, please keep blessing our Roman as you have. Love and thanks to all of you for your support at this most difficult time. It truly helps me and gives me strength to be there for my friend. Jody, Mike, Sheridan and Roman Fariello:)
April 17, 2009
Hello to our family, friends and new friends!
There is no easy way for this to come out. Somehow I am now all of sudden feeling BLANK. Corey had his PET scan today. The news was anything but good for the Nickells. Corey has areas in both of his legs at the tops and at the knees, in his liver and possibly skull. Dr. Wagner seems to conclude that it might be back in his bone marrow as well. Corey will have a Cat Scan  of his head, chest abdomin and pelvis and an MIBG scan early next week. Corey's counts have fallen way below into the worry zone too.
 
I spoke with Debra as I was eating dinner. I answered the phone "Debra, let me call you back afer I eat my brat"...she replied sadly "Jody, I don't think you want me to call you back"...I IMMEDIATELY knew what was wrong. She did not have to say a word to me. I started to cry and Sheridan looked at me. I quickly left the dinner table and ran out to the garage to be outside and away from the kids. I broke down on Debra...but not for long. I quickly gathered myself for her. I put on my very best act all for her. She reads my updates so she knows everything and will be reading this, maybe not tonight, but she will. We talked some more and then I told her to go be with her family and to call me later on tonight or in the middle of the night when she is awake and can't sleep. Who in the heck can sleep with this kinda news! NOT ME! I told her to call me so we can cry together, talk and I can listen to her. This is a road I am not mentally prepared to walk down with her...but I would not be anywhere else except right there by her side.
 
I am really not sure how I am feeling. Like a zombie. Like in a fog. Like this is not happening. This is not fair. This is not suppose to be happening with either of our boys. We have ALOT to do with RALLY 'ROUND THE GOLD RIBBON TOGETHER! We are suppose to be doing this TOGETHER...but no....evil NB has to make the road even more difficult. I cannot stress to all of you enough the fear I am feeling right now. Not just for Corey...but Roman and all the other NB WARRIORS out there. NB is so silent. It is so sneaky. It is like something invisible and then all of sudden, you can see way too much! I don't even know what I am saying, all I know is that my partner, my fellow NB warrior mom and closest friend Debra Nickell, just got handed the most horrific deal of their lives...and I cannot do a thing about it.
 
All I can concentrate on is what I CAN do. And what I CAN do is have a RIBBON MAKING DAY here on Sunday as planned. I cannot stop. And I won't stop. And I know Debra would not want me to stop. So I will continue on doing what I can do...SPREAD THE MESSAGE OUT THERE SO THAT NO ONE ELSE EVER HAS TO HEAR WHAT DEBRA AND JIM HAS HAD TO HEAR TODAY!!! I need your help to do this. My partner is going to be spending every single moment she can with sweet Corey. I want her to know that OUR GOLD RIBBON MISSION will be of my highest priority after both of our families. That being said...
 
I took Roman to the doc today...he has a sinus infection and is on an antibiotic. So, all of you out there with kids who usually help us with ribbons, you may still bring them if you want to but know Roman is coughing and has a clear runny nose. He is not sick and feeling yucky...just sinus stuff.
I would not even think about having people over here if Roman were the slightest bit contagious, but he is not.
 
So, I am asking people to come over for ribbon making day on this Sunday around 1:00. Please let me know if you can make it. I know many of you want to do something, anything... and feel helpless with the news of Corey...put your energy into Making Ribbons with us for Corey. For Roman. And soooooooooooo many.........tooooooooooooooooo many beautiful kids out there fighting for thier lives. I cannot type anymore. I am a bit of a MESS right now. All of you know that Debra and I are as close as two Cancer Moms can possibly be. Please just let me know if you can come on Sunday. And just pray for a miracle. 
 
God, only YOU have the control and the plan. Please, I am begging you, please give me the strength to be there for Debra. Use me for HER, as I know you will. God, please keep Corey safe in your hands and keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:(

April 17, 2009
Hello to our family, friends and new friends! Well, let me start off by saying we need A LOT of prayers for our sweet Corey. The past couple of days have been rather difficult on him physically. His platelet count has dropped way too much and he needed a transfusion yesterday. He is having a very hard time putting any weight on his right leg. He keeps telling his mommy that his leg hurts and that he has “Yuckies in his head again”. Needless to say, Debra and Jim are worried and more than worried. He also has an unexplained rash all over his body too. Have no idea what it is or where it came from. So, the plan is for today, around 2:00, Corey will have a PET Scan of his entire body from head to toe. Roman has never had a PET Scan, so I really have no detail info on what it is except that it will show any abnormality, similar to an MIBG Scan.  

My dear friend, Rally Ribbon partner and fellow Cancer Warrior Mom Debra, is just beside herself with worry and fear. That feeling of knowing that your son is in pain and YOU as his mommy cannot do ANYTHING to help him, is the worst feeling for ANY parent to have to feel. Please, if you have not done so yet, go to Corey’s carepage cp:coreynickell and leave them a message of support and love and hope that Corey remains NED with his PET Scan. They may get preliminary results today but may have to wait until Monday for results…that makes for a VERY long weekend for the Nickells. Please pray that this is not a sign of another relapse for Corey. My gut hurts with worry and stress for Debra and Jim and their families. Just pray.

I went yesterday for all of my pre-op stuff. Everything went well. My surgery is next Thursday at 1:00. And, since Tuesday, Roman has been sick with a horrible cough and runny nose and just looking awful. Mike and I feel it is a combo of being sick and some allergies as well. Poor Roman….you can just look at him and tell he’s feeling crappy. So, with Roman being sick and not knowing what is going on with Corey, I will let everyone know about Sunday’s Gold Ribbon making. It’s up in the air. If you have any doubt or questions, you can call me or email me. I really wanted to get another Sunday in to make ribbons before my surgery.

That is enough for one update. As Debra’s Rally Ribbon partner and friend, her fears are my fears. Her worries are my worries. I copied this from Mimi’s carepage…I thought it was fitting for Debra and I and our relationship and what is going on with Corey right now.

Cancer moms

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you,
With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep .
Make up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…

God, please keep Corey safe in your hands today. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello

April 12, 2009
Hello to our family, friends and new friends!
We have had a fun filled weekend!!!!!!! On Saturday, we had so much fun coloring eggs with Uncle Andy, Aunt Jenn and cousin Ian, Aunt Coleenie and cousin Kathleen "KK" and Duppy too. Derney stayed at home to get ready for the big Easter meal on Sunday at their house. Roman's hands were covered in dye...thanks to Aunt Coleenie for telling Roman to keep dipping his fingers in the cups of dye...we love you Aunt Coleenie:) Aunt Coleenie also brought the kids coloring/sticker books and yummy rice crispy treats and brownies...thank you Aunt Coleenie! And then the kids just played outside...even though it was rather chilly out. Click link to view Easter Pics! 
 
 
Then today, Sheridan got up first and started to roam the house looking for their baskets. She came into our room and wanted to look without Roman...I told her that he was still sleeping and we would have to wait on him to wake up. The next thing Mike and I hear is Roman waking up....hmmmmmmmm, wonder how he got up so fast! They both ran downstairs to look and Sheridan looked in our hall closet and found hers right away. Roman took maybe 1 minute longer and went into the dining room and found his by the aquarium on the floor. Our house is in shambles right now because we are having our kitchen floor tiled. Everything is out of place and sitting on top of our counter tops and our kitchen table and chairs is in the dining room with the dining room table and chairs...talk about chaos and being crowded.
 
By the afternoon, we were ready to head on over to Derney and Duppy's house for an Easter Egg hunt in the backyard and dinner. The kids found lots of eggs with money inside and some candy. They had a blast! Mom made a really nice Italian dinner for us and we had homemade cookies too. YUMMY! Thanks to Derney and Duppy for making home really fun and for making wonderful memories for the kids that will last a lifetime. And a thank you to Aunt Jenn for the kids' bunnies and candy. 
 
Some of the time today I kept thinking about 2 years ago... my sweet Roman's eye was getting worse and worse.  Click on link to see Roman's eye 2 years ago...Easter time.
 
More swollen and more black and blue everyday. I looked at him this morning standing by our pantry door and all I could do was stare at him. Stare at his eye. Stare at both of his eyes, making sure nothing has changed. That feeling of fear I am afraid will ALWAYS be with me. It will never leave me.
 
I want to remind all of you about the Butterfly Walk on May 9th. Please, if you have not registered yet or donated yet and want to... go to www.Butterflywalk.org and look for the Rescue Roman Team. Also, we will be having another ribbon making day here next Sunday on the 19th at 1:00. We'd love to have your help and your hands:) 
 
I hope all of you enjoyed your Easter just as much as we did. Making many memories that people sometimes take for granted. I don't take anything for granted anymore. To all of my fellow cancer parents who are dealing with treatment or relapse and those of you who are missing your angels already in heaven, I thought about you many times today as I stared at my son...my heart was heavy for all of you. My thoughts were with you today as yet another holiday goes by. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
April 7, 2009
Hello to our family, friends and new friends!
Today was a very very emotional day her at the Fariello household. Lauren "Our Angel" came to visit us one last time before leaving soon with her husband Joey. They are headed for Oklahoma. She came and surprised the kids today at the door. They of course were extremely excited and happy to see her. So was I! They played and ran around and danced. The kids just love her so much. Lauren and I had time to talk. We always think back and talk about how God put us in each other's lives for soooooo many reasons. Again, God was placing puzzle pieces right before us and putting them together for ALL of us for the perfect fit.
  
Then, it came time for Lauren to say Goodbye. Roman did just fine. He gave her a couple kisses and hugs and then it came time for Sheridan to say her goodbye...not so easy with her. She knows and understands from the last time Lauren left, she was gone a very long time. This time she is old enough to know and understand that Lauren will be gone a long time away from us again. She just climbed up into Lauren's lap, while standing, and wanted Lauren to hold her. She just balled her eyes out. She did not want her to go. It was very emotional on all of us watching Sheridan cling on so tightly to Lauren. I was not prepared for Sheridan to be that emotional with Lauren leaving. I don't think that Lauren was either! Lauren, we love you and miss you already! YOU are the very best and we are so blessed by you and having you in our lives always! Nothing but the very best to you and Joey as you begin another chapter in your lives together. We love you always! Click link to see pics of Lauren with the kids and dress ups!
 
And, while Lauren was here today, I got a call from the doc's office with a surgery date for my thyroid. It will be on Thursday, April 23 at 1:00. Mike and I will have to be at Good Sam at 11:00. The surgery is scheduled for 3 hours. It is alotted for that amount of time in case they have to remove the entire thyroid. It is outpatient surgery, however, if the doc has to leave a drainage tube in, I have to spend the night for one night. I will then have a follow up visit with the doc 2 weeks after surgery.
 
I have a pre-op physical on April 16 with our primary care doc. Also, on that day I have to have some lab work done too. So, busy times are ahead for the Fariellos. I want to remind everyone that the registration for the Butterfly Walk must be done on before April 25. So, if you want to walk with us or donate go to www.butteflywalk.org  and look for RESCUE ROMAN's Team.
 
That is it for today. That is ALOT in one day. I am emotional after seeing "Our Angel" leave yet once again. As I told Sheridan "adults have to do things at times we don't want to do or like to do... some of those things are very difficult to do and one of those times is now". Lauren will be forever embedded in our hearts and in our lives. We cannot thank GOD enough for sending such an amazing, beautiful young lady to us at the right time when we needed her. She is such a wonderful gift from above:) God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) 
April 5, 2009
Hello to our family, friends and new friends!
Today we had a nice gathering of amazing wonderful people to help make GOLD RIBBONS. I want to personally thank these amazing supporters...Derney, Duppy, Uncle Steve, Aunt Coleenie and my niece Kathleen, Debbie and David Powell, Marsha Benjamin and Kathleen and Haley Bertline. And I could never forget my partner Debra Nickell and sweet Corey for being here, Corey we love you! I know I speak for Debra too when I say we have the most wonderful team of supporters for both of our boys. We could NOT do these ribbons by ourselves. It is because of all of you that support us when we have these Ribbon Making Days, that we are able to make a difference for Childhood Cancer. For that, our hearts are filled with your support and we could not thank you enough.
 
We made over 1500 ribbons today...HOORAY!!!!!! These ribbons will be made for the convention in Atlanta in mid May. The same convention that Roman's video will be shown to over 5000 people titled "SAVING ROMAN". So, those of you who could not make it today...mark your calenders for Sunday April 19th at 1:00. That will be our next RIBBON MAKING DAY here at our house. We have such a good time with everyone here. The kids always have a blast playing in our "messy" and "chaotic" basement. And Derney always brings yummy treats! Thanks Derney, we love you!
 
On the homefront here, Sheridan is on spring break this week. Roman will be glad and I am sure they will fight all the time she is off school:) And, Roman will pick Speech Therapy back up, once a month, starting next week with Miss Tina. The kids miss you Miss Tina!!!
 
Nothing else really going on right now. I am still waiting for a surgery date on my thyroid. Hopefully, I will know a date by the middle of the week. Thanks again to all of you who helped today:) God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
April 3, 2009
Hello to our family, friends and new friends! I want to start off by thanking so many of you for your comments on my last update. The comments on Roman’s carepage and in my emails touched my heart and brought tears to my eyes with each one that I read. I cannot stress enough to you how I appreciate each and every one of you. Our friends, our families and our wonderful neighbors are the very best. I love our carepage and caring bridge families as our own. The support we get from all of you is priceless!

I want to also remind all of you that registration for the Butterfly Walk ends on April25. You must register online before that day if you want to walk or donate to the Rescue Roman Team. The walk is at 10:00am on May 9th. Walkers must be there at 9:00 am.  For more info go to www.Butterflywalk.org  We thank you in advance for the donations that have already came in for Roman’s team. The money raised goes DIRECTLY to Neuroblastoma research at Cincinnati Children’s Hospital Medical Center .

I am also having a Ribbon Making Day at my house on this coming Sunday at 1:00. We usually make ribbons for about 2 or 3 hours. We could ALWAYS use more hands!!!! If you have never helped us and you want to come this time, please email me at Shivers@insightbb.com for directions etc. Bring a friend or 2 as well. Trust me, your heart will be full knowing you are helping bring the much needed awareness that Childhood Cancer deserves. Our Rally ‘Round The Gold Ribbon mission is doing very well. We have received A LOT of wonderful donations from A LOT of WONDERFUL amazing people across the country who want to make a difference for our children fighting for their lives. So… c’mon and join us on Sunday. We need your hands!!!  We have several events coming up and we need GOLD RIBBONS!!!!!!!

We have scan dates for Roman…May 19, 20, and 21. I am already psyching myself up and starting to get mentally prepared. I will hopefully by then have had my thyroid surgery…so I can fully concentrate on Roman at that time.

That seems to be about it at this time. PLEASE continue to pray for our carepage/caring bridge families. So many of them are going thru transplants now, a lot of kids relapsing, a lot of kids with chemo treatments etc., and a lot of worried sick parents. And let us not forget my fellow cancer parents who long to hold their angels who are already in heaven. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)

April 1, 2009
Hello to our family, friends and new friends! OK…I have not had a “windy” update in a very long while. I need to now. Just something in me that I need to let out now. Maybe it’s the fact that today is April 1 2009, and it is the first day of the month that our NB journey began with Roman almost 2 years ago, and we didn't even know it was beginning. This time in April of ‘07, Roman’s eye was getting bigger and bigger and more black and blue. I remember looking at him many times thinking, I need to get him to the pediatrician and get his eye looked at. I was thinking he broke his brow bone when he fell on the wooden barn that Derney bought the kids for Christmas. Little did we know that our son had a beast growing inside of him; a very deadly beast at that.

I can remember Roman’s visit with Dr. Michaels. He touched Roman’s eye and pushed on it and felt it and made the referral to Dr. Motley, the eye doc. I can remember the first visit with Dr. Motley like it was just today. I can remember hearing Dr. Motley say “if that swelling does not go down in 1 week, I am sending you for a Cat Scan”. We then had a visit with Dr. Motley on the 24th (a week later), and he wanted to send Roman that afternoon, but Roman had already eaten and we had to wait for the next day, the 25th, to do his Cat Scan.

That night, I remember Mike and I were lying in bed, staring up at the ceiling, talking about what we thought they were going to do with Roman’s eye. We both thought maybe a surgery to fix his broken brow, since we were both convinced that he broke his brow bone. Little did we know that night would be the last peaceful night of our lives. The last night of  “normalcy” in our lives and the last night of being safe. Our lives were going to be taken in a complete opposite direction and be turned upside down. We had no clue, no idea of what was about to land on us and crush us into tiny pieces.

April 25th, 2007. That’s just an ordinary day to all of you…a day that probably does not ring a bell with you for any particular reason. April 25 2007, will go down for the Fariello family, as the absolute worst day of our lives. If  I ever questioned any faith that I ever had in my life, it was on that day. I had no faith at all when 4 doctors sat down across from us, looking at us and telling us “Your son has cancer”. Where was God at in that moment! Mike and I squeezed each other’s hands, while I sat looking at Mike with tears running down his cheeks. That moment is so very real. That moment is a moment that I wish I could forget, but it is embedded in my brain forever. That moment replays in my head all the time. It’s a scary moment. It’s a life changing moment. I cannot even explain the moment to you. The words are just not adequate enough to capture the hell we felt that was being forced upon us.

As I sit here today, almost 2 years later, I can honestly share some good things with you. My own personal faith has never been stronger. Looking back, that when I felt God was abandoning us, he was actually pouring himself all over us. God was setting up people, events, etc. to be placed in our lives as pieces of a puzzle. He was strategically placing Mike and I in a role that not too many parents are “chosen” to be in. God set up Mike with a new job, better benefits etc. God set us up in a wonderful new house with wonderful new neighbors. He timed everything just right for us too. Mike’s new insurance started on April 1, 2007. Mom (Derney) just retired and was feeling like she needed to do something to keep her busy. Boy, God sure was busy planning for us and we didn’t even realize it yet.

 I think back to all the times where I thought God disappeared. Only yet, now I know he was right there all along for us. I remember getting very angry with God, angry with the “why us” and “why Roman” syndrome. Well, I am here to tell you that almost 2 years later, why NOT us. The strength that Roman and Sheridan have both given to us from that first day of diagnosis, is nothing short of amazing and impressive. The people that poured their love and support on us with food, cards, money, physical support, prayers, even cleaning our house will never leave our hearts. Mike and I are forever changed going thru this with our son. Roman has changed so many lives and inspired so many to CHANGE the way they live their lives, all at the ripe old age of 3.

I have many people still send me emails and messages and comment on how strong I am and how I inspire them with what I write in my updates. They tell me that they love a little more now because of Roman. They put their priorities in order because of Roman. They don’t take things for granted because of Roman. They don’t take the people they love for granted anymore. They don’t worry about the small stupid stuff anymore. All of this from one little boy’s cancer diagnosis.

I am truly in awe of my life now. It is not the life that I thought Mike and I were going to have with the kids. It’s so much MORE than I ever thought or could imagine it would be. Roman’s cancer happened to us for a reason. Roman’s cancer happened to him for a reason. Looking back since then, we have been blessed with so much. Who would have thought that such a deadly horrific childhood cancer could bring so much GOOD to us and into our lives.

Yes, it took me a very long time to realize that bad things happen to good people. Bad things happen and it forces us to make good out of bad. Which is what we did and continue to do. With our RALLY ‘ROUND THE GOLD RIBBON mission, it allows me to “give back” in a way that I know will make a difference for childhood cancer. It gives me that feeling of self worth and what I am doing matters. It is such a good feeling to know that there are people out there who want to help make a difference and they have while helping Debra and I with our mission. Again, all of this stemming from Roman’s diagnosis. I really feel strongly that I was chosen for this role of getting the message out there. God wanted to utilize me because he knows me and my personality. He knows that I would do whatever it takes to make an impact for all children with cancer. I am honored.

So, as we near Roman’s diagnosis anniversary this month, please allow me to “remember” things in my updates. It’s all part of the journey and it allows me to let you “in”. I will probably do something special like last year, as a dedication and “remembrance” of the journey for Roman and Sheridan. So that they will be able to see clearly how something so horrific can bring such an over abundance of greatness.

We are fortunate and blessed that Roman remains NED. God only knows that Mike and I would walk thru fire and hell to save him and cure him if we could. Roman’s future is still a huge question mark even though we are at 2 years later. He is not out of the woods as I am reminded each time we go for scans every 3 months. That in itself is a constant reminder to us that we live each day to the fullest. We live each day as if it could change in a second as it did on April 25, 2007 for us. We can’t and will never go back to the life we had before the news of that day. Even though I wish Roman’s cancer never happened to him or to any other child, I have welcomed our “new” life with abundant strength, faith, optimism, and a new found hope that a cure has got to be out there somewhere within our reach.

Thanks to all you for supporting us for almost 2 full years now. I cannot believe that we have been at this for that length of time. The support we have gotten from all of you is a gift from God. One of the many gifts we hold close in our hearts.

Thanks for letting me “let it out” with all of you. God Bless! Jody …Very Proud Cancer Mom of Cancer Warrior Roman:)

March 28, 2009
Hello to our family, friends and new friends!
Yesterday, I went for my appt. with Dr. Nurre to discuss surgery and ask questions. Mike went with me. He is going to remove the right side of my thyroid. Surgery will be done at Good Sam hospital. It will be outpatient, but if he needs to leave a drain tube in for some reason, I will have to spend the night. The reason for leaving the left side of my thyroid alone is because people can go on without ever needing any medication only having half a thyroid. He said leaving behind half is better than taking all. However, he did say, since thyroid issues run in the family, down the road, my remaining left side could burn out and I would need medication everyday anyway.
We discussed the what if's about why he would go ahead and remove the left side...he said while I am under, they will do some quick pathology on the nodule and the thyroid itself to check for cancer etc... If God forbid there is anything questionable, he will then remove the left side as well. He did say most women have alot of nodules that are mostly non cancerous. Men having thyroid nodules, there seems to be more cancer with men then women. He said he will do a TSH level and a T4 level at 6 weeks after surgery. He said it usually takes that long to level out. So, we are looking to do surgery at the end of April or early May. Dr. Nurre's surgery scheduler will be in contact with me next week sometime and then I will have an actual date.
 
Now, onto some Ribbon News...we have about 2000 ribbons already made for the Butterfly Walk on May 9th. So we are good there. However, we now need about 3000 ribbons for this convention that Roman's video footage is being used for. This convention is May 18 thru the 21. 
 
So...CALLING ALL RIBBON MAKERS!!!!!!!!!!! Here are the dates we can get together and make ribbons...Next Sunday, April  5th.......Sunday, April 19th.............and possibly Sunday,  May 3rd. I'd like to get 3 dates of Ribbon Making before the convention. All 3 days will be around 1:00 at my house. Please let me know if you can come. Kids are welcome as long as they are healthy. We usually make ribbons for about 2 to 3 hours. We can usually crank out about 2500 or so ribbons with about 10 people. So, let me know if you can come. We welcome new people too.
 
Also, just a reminder to register for the Butterfly Walk on May 9th if you want to walk with us or just to donate to Roman's Team. Go To www.Butterflywalk.org for more details. Thanks to the people who have joined so far and who have donated. It is so important that we fund research to find a cure. Our cancer warriors deserve only the very best, and right now, the very best is NOT ENOUGH!!!!
 
I guess that is it for now. God, please keep blessing our Roman as you have. Have a good weekend and God Bless! Jody, Mike, Sheridan and Roman Fariello:)                
March 24, 2009
Hello to our family, friends and new friends! It has been a very SICK weekend for me with a fever, sinus infection/upper respiratory issues, nasal congestion, spring allergies, anitibiotic, etc. I felt my worst on Saturday. Sunday, we managed to go to Derney and Duppy's house for the afternoon for dinner. The kids got to play with their cousin Ian and had alot of fun as they always do over there. Then, yesterday morning, I woke up with a horrible migraine. March is just not my month to be healthy. Anyway, it would not be so bad except that we had MAJOR plans yesterday afternoon from 4:00 until 7:30. It's so exciting to finally get to tell all of you about it....

About 3 weeks ago, I received an email on Rescue Roman about a company looking for a child with Neuroblastoma to be their feature child for a client convention they have in May. So, I of course answered the email and told them I was interested in learning more.

Emily Deckelman, from WhiteCoat Strategies contacted me. She read up on Roman and his history and thought he would be the perfect child to portray as their NB feature child. She discovered us from doing Malaak's Angel Of The Month interview on her website www.angelrockproject.com. Thanks to Malaak and to Robyn O'brien with www.Allergykids.com, we got to share our story yesterday on camera. Our story will be told briefly for a convention held in May in Atlanta . This convention will be for about 5000 or so investors/scientist etc. The video they will show at the convention will be called "SAVING ROMAN". Yes, Roman is a little star:) It will be actual never before seen footage of Roman during the worst part of our journey, the transplant process. Mike and I both took footage of Roman during that time. I took it as a journal for him and Sheridan both to have forever. Little did I know that it would actually be used to push for research for childhood cancer, more specifically Neuroblastoma.

Yesterday, Emily and her crew came to our home from Washington DC  to get footage of Roman and our family, and to interview Mike and I. The footage of the kids was the easy part. The actaul interview, reliving the day Roman was diagnosed, was harder than expected on  Mike and I. But, it turned out to be the raw emotional footage they needed and wanted for everyone to see. No matter how many times we have talked about that day, the tears just somehow seem to completely fall out of our eyes so easily. We made it thru and it felt good to answer the not so easy questions during the interview. Click on link to see Emily, and crew with us:)

http://picasaweb.google.com/jody.fariello/RomanAndTheCameraCrew?authkey=Gv1sRgCPemmPPL9eyT9QE&feat=directlink

Emily wants to push for this footage to go other places besides the convention. She told me she has some connections. I told her we were on board for whatever may come our way:) We are more than ready to spread the word about how ugly the childhood cancer truth really is. The fact that Roman's protocol is over 30 years old, proves that NB specifically is UNDER RESEARCHED and UNDER FUNDED...this convention along with Roman's story, will hopefully generate new funding and supporters to get going on something new for our children with NB. I told Emily, we will do ANYTHING to get Roman's story out there to the general public if it will generate awareness and research funding. 

Emily and her crew brought the kids bubbles, Roman a truck and Sheridan a Hello Kitty diary and pen. And for Mike and I, we got a beautiful card and a 7 in. digital picture frame. How nice are they! We want to thank Emily Deckelman (Project Manager), David Welch (Chief Executive Officer) and Chip Kuhn (Director of photography) for coming and bringing presents for the family. We mostly want to THANK all of them for their hard work yesterday and for allowing us to be a part of something that is close to our hearts, and for allowing us to share our story. They did an amazing job with the footage etc. We cannot wait to see the final 7 minute video for the convention. If I get a link, I will of course share it with all of you.

Other known people people getting to be a brief part of this video is president and founder of The Children's Neuroblastoma Cancer Foundation www.nbhope.org Patricia Tallungan. She will have an interview as well as Ohio Congress woman Caroline Pryce Walker. Both women lost their children to Neuroblastoma and continue the fight and push for funding for NB. The video will be a great one indeed. It's very exciting to know that Roman's cute little face will be a part of something that could make a difference and that the everyday person will melt when they see his little face.

Roman and Sheridan are both doing fine. Sheridan still has a cough but doing well. Roman, thank God, never got sick and I hope he does not either. We have it kind of easy for the week. I have my appt with Dr. Nurre on Friday at 4:30. I will discuss with him surgery, meds, after surgery etc. and Mike will be with me too. I will update then to let you know what the plan is. Just a reminder of the www.Butterflywalk.org  People who need to register, you should really think about it soon here. Also, people who want to donate any amount for Roman's team, can do so...look for Rescue Roman. We thank you:)

I guess that is it for now. God, thank you so much for putting people in our lives like Robyn and Malaak...it is because of them, we got to share our story. Thanks for sending Emily Deckelman in our lives. God, please keep blessing our Roman as you have. God Bless all of you! Jody, Mike, Sheridan and Roman Fariello:)

March 18, 2009
Hello to our family, friends and new friends!
Well, my results are in. The doc called earlier this afternoon. He said the scan really did not prove much to him other than my thyroid is underactive. Which I had a pretty good clue to that already with my symptoms. He also confused me because he said he found that to be "strange" to him since my TSH was proving that I was over active and not under....hmmmmmmm. My TSH was a .33   I have no idea what that means if anything....so people out there with knowledge of this, please help the confusion for me. Email me or call me. I sure appreciate your knowledge and insight to this TSH confusion. Thanks!  
 
Anyway, he told me I also have a couple tiny cysts on the right side of my thyroid as well as this nodule in the back.  The scan did not show any hot or cold spots....why.....because MY nodule has to be difficult and hide behind the thyroid, so it did not even show up on the scan at all. With that being said, he wants to remove the right side of my thyroid...for fear the cysts will get bigger, the nodule will get bigger or God forbid start growing into something else. He wants me to think about things and meet with him next Friday for an afternoon appointment to discuss surgery, what he will do etc. So, I obviously don't have to think about anything, it only makes perfect sense to remove it...but my question will be to him then...why not remove the whole gland so I do not have the same thing happen on the left side. Anyway, there it is. I will know more next week when I meet with him.
 
I also emailed our nurse coordinator for Roman to ask her to get me dates for Roman's scans in  May so I can schedule my surgery around his scans. Either before or after. I know, just one more thing to add to the Fariellos' house of chaos:) So, hopefully she will get them scheduled ASAP for me.
 
I wanted to also remind everyone about the Butterfly Walk on May 9th. If you join our team, Rescue Roman, or if you donate to Roman's team, please know this is a very special walk. It hits close to home for us because it is in memory of Hannah Paribello. Her young life was taken away by stage 4 Neuroblastoma. ALL MONEY RAISED goes directly to Cincinnati Childrens Hospital for RESEARCH on NEUROBLASTOMA. So, go to www.butterflywalk.org and find Roman's Team to make a donation if you can. We all know NB is in desperate need of new research. Roman's protocol he completed was over 30 years old.
 
I guess that is it for now. I am sick now with what Sheridan had. I just hope Roman and Mike don't get it now. Thanks for the prayers for Roman for me and for our family. We have the absolute best support system out there. God Bless! Jody, Mike, Sheridan and Roman Fariello
March 16, 2009
Hello to our family, friends and new friends!
What a great weekend for us...well, besides Sheridan being sick. On Saturday, we went to Corey's Make A Wish party. It was just amazing seeing him so happy as he should be. Corey, we love you sweetie! He has the best playroom ever now thanks to the Make A Wish organization and to the construction guys who did their basement. Corey has his very own Fire Truck, literally, built just for him! To have many many hours of fun with happy memories to be made along the way! Please go to cp:coreynickell and check out Debra's latest video montage of the party. Roman had a blast! Sheridan of course stayed with Derney and Duppy because she was sick. We are so blessed and fortunate to have Corey and Roman both be NED together again!!!!!!!
 
Click on link to see pics from Corey's Party...
 
 
Today, Debra and I met with Ellen Flannery, founder and president of Cancer Free Kids  www.cancerfreekids.org . We talked about our kids, experiences and how both of our organizations could benefit each other in the future. We brainstormed new ideas and discussed how to possibly excute those ideas into reality. I will keep you posted on future events that we do together for Childhood Cancer Awareness and Research. It will be great to work with Ellen and her team at Cancer Free Kids. It's very exciting to venture into new things. Debra and I are just two cancer moms on a serious mission to make a difference for children with a childhood cancer. Wherever that mission may lead us, we are ready and willing to give it our all.
 
Sheridan is still coughing her head off. I hope she is better soon. And I hope Roman does not get this. He surely does not need it. None of us do. Spring, hurry up and get here!!! I have not heard from the doc yet. I will maybe try to call the office tomorrow afternoon if I don't hear anything before then to get my results. Until then, nothing else to report. 
 
God, please keep blessing our Roman as you have. Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello
March 13, 2009
Hello to our family, friends and new friends!
OK...lets see...to answer some of your replies to my funny last night....NO I DID NOT GLOW in the bathroom with the lights off:)
 
OK...Sheridan stayed home from school today because she was running a low fever, coughing and complained that her throat hurt her. So, I made her an appt. with the doc for 2:00 today. She does not have strep thank goodness. Just something viral that will have to run its course.
 
And, I went this morning for my scanning and testing. Very interesting...our thyroids are suppose to look like a butterfly shape...mine today....looking on the scan looked like a butterfly but with missing the top portion of its wing!!! Now, I am obviously not a tech, radiologist or the doc but it did not look like a "normal" shaped thyroid. We will see next week, probably by Wed I am guessing, when we will have results. When I was lying on this table today, being really still for 8 minutes at a time for each pic, I thought about Roman alot. How much he has been thru...all the scans, injections etc. I could not stop thinking about him. And then I thought, how amazingly strong he is and will be for everything he still has to go through. I am so proud of you Roman! YOU my little man have taught me so very much.
 
Which leads me to news on my "adopted" son Corey...NED......NED.......NED....if you have ever doubted that God listens to prayers....then here is your answer! Debra got word this afternoon that Corey is literally a walking miracle:) We are so very proud of you Corey, you are such a tough fighter and a cutie! NED ALWAYS for both ROMAN AND COREY!!! Thank you God!
Also, Destiny Ross got word that her MIBG came back NED!!! HOORAY DESTINY!
 
So, wonderful news to share all the way around. We hope you have a wonderful weekend. Corey gets his MAKE A WISH tomorrow...I will fill everyone in on it over the weekend. Until then! God, please help Sheridan feel better. THANK YOU God for keeping both Roman and Corey safe in your hands. God Bless! Jody, Mike, Sheridan and Roman Fariello:) 
March 11, 2009
Hello to our family, friends and new friends!
Just an update to ask for a few prayers please...our sweet Corey cp:coreynickell is having his MIBG scan tomorrow. This is a vey important scan for him to see if the chemo and the radiation did their jobs with the spot on his upper femur. I feel like Corey is my "adopted son". The Nickells and the Fariellos are two families that God definitely wanted connected and definitely wanted their paths to cross. I feel that Mike and I were blessed to have the Nickells in our lives when Roman was diagnosed. And feel even more blessed now to know that we have been thru each others ups and downs with both of our boys' journeys. So, please, tomorrow around 9:30, say a special prayer for sweet Corey that his MIBG scan shows nothing new.
 
Also, while Corey is having his scan done, I will be going for my very own first part of my 2 day scan on my thyroid. I will not have results until sometime next week. But I will update to let everyone know about Corey and myself as soon I know something.
 
There are alot of kids having scans this week and next...both Chloe Hightower and Destiny Ross are two beautiful girls that have been NED just like Roman. We are praying hard to hear the all clear for them and to see those 3 little letters...NED!!!
Just prayers please for all the kids. Scan time is so difficult not only on the kids and the parents, but the family as a whole. I know it takes a toll on our family during scan time. And the waiting as we know is the hardest thing to do for those results.
 
A reminder about the BUTTERFLY WALK...you can register anytime. Just go to www.butterflywalk.org find RESCUE ROMAN and either click on JOIN or DONATE. If you want to join, please do so and have fun with us on the walk. If you just want to donate, Roman thanks you so much for helping him raise money for our team!
 
OK I guess that is it for now. I will update as soon as I hear about Corey and let you know how my scan goes. Thanks to all of you who continue to lift up Roman, our family and our friends in your prayers. The support we continue to get is amazing and it touches our hearts more than you know. God, please keep blessing our Roman as you have. God Bless! Jody, Mike, Sheridan and Roman Fariello:)

March 8, 2009
Hello to our family, friends and new friends! WOW!!!!!!!!! A lot to talk about so here it goes…

From my last update, I talked about good news to share…well….Lauren “OUR ANGEL” is back home from South Korea and we could not be happier. She came over here Friday evening and spent the next 5 hours with us. The kids literally did not leave her be at allJ She immediately started chasing the kids around and it felt as though she never left us. Lauren’s husband Joey, will join her here at home in a week or so and they will be here with us until April 13th. Joey has to report back to base in Oklahoma by then. So, we are so happy she is back home in the states with us. Click on link to see pics of Lauren and Ribbon Making today.......

 http://picasaweb.google.com/jody.fariello/RibbonDayLauren?authkey=Gv1sRgCMSV2I7oku3S_gE&feat=directlink

 To our new followers, a lot of you are not aware of Lauren “Our Angel”. Allow me to fill you in on why we call her that. Lauren started babysitting our kids when Roman was around 6 months old. We paid her $5.00 an hour for both kids. The kids loved her and we used her a lot. Then, when we moved out here from Bright Indiana, Lauren still watched the kids for us because she was starting college at NKU. When Roman was diagnosed in April ’07, Lauren came to us at the hospital and told us “I am yours all summer long for FREE to take care of Sheridan so she would have some stability in her life” while Mike and I were at the hospital with Roman for treatment. So, after her finals at college, she moved in here for the summer to take care of Sheridan for FREE.

You see, looking back at things now, we could not have made it without her. What young girl at her age would sacrifice her time, her summer etc. to help out a family for FREE. She helped us out in more ways than I can count and she knows that. Lauren is every bit of “OUR ANGEL” and she always will be. We will always be family in every way with Lauren. So, when she left us last year to be with her husband overseas, we missed her horribly. The kids missed her. And here we are, one year later already and we got to visit with her and spend time with her. Lauren, we love you so much. We are glad you are home safe and sound.

So, onto RIBBON NEWS….we corrected and tagged over 2000 RIBBONS TODAY!!!!!!! HOORAY!!!!!!!!!!!!!!!!!! We have the ribbons ready for the Butterfly Walk in May now. Thanks to some very special people who make these ribbons happen for the awareness that is needed for Childhood Cancer. When I go calling for help, it is ALWAYS there… I want to say a personal THANK YOU to the following amazing ribbon makers: Mom, Aunt Coleenie, Lauren, Debbie and David Powell, Jamie, Marsha, Stacey, Tracy, Stephanie and my husband Mike. We did so amazingly well today. We could not do this without your help and the sacrifice of your time. And, to the people that could not make it today…never fear….we will be having another Ribbon Day really soon here.

Yesterday was Mike’s 36th Birthday! Happy Birthday Honey! My niece Kathleen babysat for us so we could go to dinner with our friends Debbie and David Powell. It was a wonderful busy weekend. I love Ribbon Days and look forward to seeing my friends and just working all together to feel a part of something that is so needed and so important for the kids fighting for their lives. It feels so good knowing we are working together to make this happen.

OK…I think I gabbed long enough now. I will update soon again before my scan on Thursday and Friday. God, THANK YOU for putting such amazing people in my life and surrounding us with love. God, please keep blessing our Roman as you have. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)  

March 6, 2009
Hello to our family, friends and new friends!

Well, it has been rather “normal” here at the Fariello household lately. Mike and I both welcome that with open armsJ Roman is his little cute self and Sheridan is her little cute self.  So, nothing to report about them…no news is good news:) However…..I do have fantastic and wonderful news to share but will do it after our Ribbon Making on Sunday…..

The RESCUE ROMAN team for the Butterfly Walk is getting some donations. We truly thank you for helping Roman and the kids in the fight of their lives. If you have not checked out the website it is www.butterflywalk.org   You can look for the team name or my name and you can either join us for the walk on May 9th, or you can just donate to Roman’s Team and help us reach our goal of $500.00. We hope to certainly pass that amount up. Please, let me know if you have any questions that I can help you with. Roman thanks you so much for helping him and the kids just like him.

This coming Sunday, March 8th, I am having people here to make GOLD RIBBONS. I wanted to remind all of you …do not forget that it is the time change for Daylight Savings. We SPRING forward 1 hour. So, that is just my friendly reminder to change your clocks etc. and be here by 1:00 if you can. There will be a lot of people here…mostly adults. Kids are more than welcome here too as long as they are healthy. And, by all means, if you want to bring a friend or two, please do so. We need handsJ

Next week, many of our care page and caring bridge families have their scans… please keep them in your prayers as always. And, it would not hurt if you said a little prayer for me too that they can fix me and I can start to feel better soon…my thyroid scan is Thursday and Friday next week.

I think that is it for now. God, please keep blessing our Roman as you have. Thanks to all of you for your ongoing support for Roman and our family. God Bless! Jody, Mike, Sheridan and Roman FarielloJ

March 2, 2009
Hello to our family, friends and new friends!
Well, it sure was a fun filled weekend for me! Saturday morning, I had breakfast with my dear friends Marge, Sis and Kari at IHOP. We are definitely glad the hostess put us in the corner! We talk about anything and everything when we are together. It is such a really good time with them. They had to to practically kick us out! I love the 3 of you ladies so much and thank you so much for your friendship and for bringing smiles and laughter into my life.
 
Then, on Saturday night I met up with more of my dear friends Debbie, Debra, Kathleen and Nora for dinner at the Olive Garden. Dinner was great and I carried my laughter over from the morning into the night. We had such a fun night. After dinner we headed to another dear friends' house, Rachel Re, for a bit of an "all girls party only". My night ended around 11:00 or so. And it felt soooooo good to be with my girlfreinds all morning and all evening. I needed the break and I needed to be with all of them. I laughed so hard, my cheeks hurt:)
 
Over the weekend, I also talked to the event coordinator for the Butterfly Walk. Her name is Amy and she is the mom to ^angel^ Hanna. Hanna lost her battle with Stage 4 Neuroblastoma at the age of 3. She fought for 7 months until NB took her extremely young life. She is the reason for the Butterfly Walk. Her parents wanted to do something in her memory. I felt honored to talk with Amy on the phone. Parents like her inspire me beyond words. God is still putting people like Amy in my life thru out Roman's journey all the time. I feel so blessed.
 
I asked Amy if it would be ok for Debra and I to pass out our GOLD RIBBONS to everyone for the walk on May 9th. She of course was immediately on board with the idea. Anything to get the awareness out there for Childhood Cancer. I thanked her for allowing Debra and I to be a part of something that truly hits close to home with them losing their beautiful daughter to NB. It will be a great day for all of us. And Roman's team already had some donations that came in over the weekend and we thank you from our hearts for supporting our son and all kids with Childhood Cancer.
 
Please, if you can't make the walk with us, go to www.BUTTERFLYWALK.org to make a donation for Roman's team called RESCUE ROMAN. It does not have to be anything huge. I know I can't tell people how much to give or to even give at all. And I know the economy is rough now for alot of people... but children battling cancer... trust me, it does not get any worse than that. They fight for their lives each and every day. NON STOP 24/7! No BREAKS! The kids of this country deserve research for their cancer, their fight, their battle, their hope for a cure. That can happen with your support and help. Tell people about the walk if you can't financially help out. That will be your way of helping spread the word for Roman's team.         
 
So, RIBBON MAKERS....we need to make sure we make 2000 RIBBONS for the walk on May 9th. Last year they had over 700 walkers, not including volunteers. Which leads me right into another open invite to anyone who can come to the house this coming Sunday, March 8th, to help make GOLD RIBBONS, cut ribbon, open safety pins, cut tags, or attach tags to the pins....by all means come on down and we will put your hands to work.
 
I guess that is it for now. Please continue to pray for all of our carepage families and caringbridge families. God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)        
February 24, 2009
Hello to our family, friends and new friends!
Well, I finally got results of my ultrasound. Not sure if they mean anything or not, because we still do not know what we are really dealing with. I still have a nodule in the back of or behind my thyroid. The reason the tech asked me if I have ever had my calcium level checked is because she was not sure exactly where this nodule was sitting...either on my throid or my parathyroid. 
 
I finally scheduled my Nuclear Scan on my thyroid this morning. It will be a 2 day test kinda like Roman's MIBG Scan. I will go in on Thursday March 12, at 10:45 for some sort of injection or swallowing of some pills or whatever. Just not sure. Then, they will tell me what time to arrive for my actual scan on the next day, Friday 13. So, there we have it. And we all know how results are with waiting for them. Since this will be happening on a Friday, I probably will not hear from Dr. Nurre until maybe Wed or Thursday the next week with results. From there, he said we will decide on the course of action that needs to be taken.
 
So, prayers needed that this can be resolved for me in a timely manner. I do not want this still going on with me come May for Roman's next round of 3 month scans. That is my biggest fear right now. I hope whatever needs to happen to me, happens before the end of April.
 
Also, we need some prayers for some of our carepage and caring bridge families. Zebbie Dodge is having scans this week. He is and has remained NED...we hope and pray he continues on this same path. Also, please pray for Serena Lambert. She is recovering from transplant, and her mommy is struggling with all the of the most difficult decisions that come with NB studies. And, please pray for Nolan Kenter. He also is recovering from transplant and has TMA like Roman did after his transplant. Only Nolan's is really really bad. And, please pray for a family who would like to remain unknown. They just had scans done last week, and they discovered a spot that was still glowing in the belly area where the original tumor site was. They do not have a carepage or caring bridge. But I ask you to please pray for this family. He has been NED for 3 years now. And, just pray for all of our friends at this time. Either with scans, tests, transplants etc. or with all of our fellow cancer families missing their sweet angels in heaven already. Way too many kids.
 
I also want to ask my Ribbon Makers to get ready...I NEED ALOT of people for tagging more ribbons. I was thinking about doing Sunday MARCH 8th. So, please send me an email or message on the carepage if you can make it or not. Even if you can just come for an hour. Even if you have never helped us yet, we welcome new people! We need your hands. So, let me know if you can come. That's it for now! God, please keep blessing our Roman as you have. Love to all of you and thank you so much for praying for Roman, myself and all of our friends. God Bless! Jody, Mike, Sheridan and Roman:) 
February 20, 2009
Hello to our family, friends and new friends!
Well, sorry to keep you waiting to hear about my appt today with the ENT doc. But, the reality is, I still don't know anything yet. Unfortunately, Dr. Nurre did not get my results back yet from my ultrasound on Wed. He also said, that it really didn't matter anyway not getting the results because the ultrasound would probably not be "everything" he needs to make a decision on my thyroid. UUUUUUUUUUUGH!!!!!! 
So, what we do know are these facts: He wants me to have a Nuclear Scan at Good Sam Hospital on my thyroid...it will show "hot spots" and just what exactly is going on behind my thyroid. This is what he needs to decide on possible surgery, where and what will be taken out etc. I cannot call to schedule this until Tuesday sometime to give them time on Monday to send the paperwork to the hospital. I want to have this scan as soon as possible...with my symptoms, I feel like I am a walking time bomb, and PMS on top of that!!!
Dr. Nurre called my thyroid "abnormal" because of my TSH level reading at .33.......he said that it was not functioning or barley functioning. He said that from my last needle biopsy on the nodule from 2 years ago, they really were not sure if they were dealing with a thyroid nodule or a parathyroid nodule, because of where it was located, behind the thyroid, right where the parathyroid is located too. But he confirmed today that the cystology came back as a thyroid nodule. He told me all of my symptoms are "normal" symptoms to have with a barely functioning or "abnormal" thyroid. He also told me that most people who have this type of a thyroid issue like me, 80% of them end up having surgery to fix the problem. So, it appears to me, that somewhere in the near future, I am probably going to be having a thyroid surgery done of somekind.
 
I have learned with Roman's journey, to always expect the unexpected and that plans are ALWAYS changing. When we want results, we cannot always have them at our command. So, right now, I really do not know anything until I have this scan done. Then we will go from there.
 
Today, Sheridan woke up puking...yea that's right! Another sick pukey child in the Fariello household. I was really bummed too because we had dinner plans tomorrow night with our friends The Powells, for my birthday. My birthday is Sunday and what a great start to my birthday weekend...no results yet and another sick pukey child...UUUUUUUUGH!!!!!!!!! HAPPY BIRTHDAY TO ME! Oh well, we are definitely going to reschedule my birthday dinner. You only turn the big 39 once! So, please pray for our SheridanBug now to get better soon. She is terribly sick. She seems to be even puking more than Roman did earlier this week. Roman is back to himself finally after being sick from Saturday to Wed. This little "bug" is taking a toll on our kids and I don't like it one bit! BE GONE bug!
 
Ok, I think that is it for now. I am sooooo wiped out, if I forgot anything, I will do another update over the weekend. Thanks for the prayers and support for ALL of us in the Fariello household. God, please keep blessing our Roman as you have. God, please allow Sheridan to start to feel better real soon. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)    
February 18, 2009
Hello to our family, friends and new friends!
Well, since I last updated, poor Roman has been so sick with the pukies and the poopies both. Today, he has started to feel better and so far so good with no puking or poopies. I hope it stays that way for him. Poor baby! I do not like it when he gets "normal" sick like this...you would think I would welcome "normal" sickies, but nothing will never ever be "normal" again for us here at the Fariello household.
 
Ok, let's see...today I had my ultrasound done on my thyroid. It took about 45 minutes from beginning to end. That's a long time to lay down with my head kinda tilted upward(all the blood was rushing to my head) so she could get to my thyroid with her device. And, about half way through it, she asked me a question. The question she asked me was "have you ever had your calcium level checked"?  I immediately thought "red flag" and why would she be asking me that....hmmmmmmmm! I told her "No" and I then asked her " is the calcium level affected by the thyroid or the parathryroid?" She answered the parathyroid. And, that was that. I know I cannot ask her anything, she is just the tech and she would not tell me anything anyway. Sooooooooo, needless to say, for the past 2 years since I let this go by the way side, I can only imagine what havoc my thyroid and my parathyroid are having on my body in general. I have MANY symptoms. I have my appt. on Friday afternoon with Dr. Nurre (ENT) and will find out then what was discovered from the ultrasound today. I just want to FEEL better, and whatever it takes to get there, so be it. I will let all of you know what happens on Friday.
 
We still have alot of prayers needed for our fellow carepage and caringbridge families with scans, chemo, radiation, etc. Corey Nickell, Nicholas Defilice, Destiny Ross, Chloe Hightower, Joe Melville, and Zebbie Dodge...probably many more to add to this I am sure. And we have a couple of our families still in transplant with issues like Serena Lambert and Nolan Kenter. Please just pray for all of them for us. We know prayers are answered and they work. Please also keep my friend Rachel Re in your thoughts as she awaits results from her breast biopsies the other day.
 
We thank you for you support as always. Roman and our family have got to be the luckiest family because we get to see things from a wonderful view on this side, of being loved and supported by sooooooooo many amazing people like all of you:) God, please keep blessing our Roman. God please help me to feel better so I can be there 100% for both Roman and Sheridan. God, we thank you for sending us the most amazing people in our lives. God Bless! Jody, Mike, Sheridan and Roman Fariello:)            
February 16, 2009
Hello to our family, friends and new friends!
Well, Roman has a "bug" of some kind...Saturday evening, I went to the grocery, and when I got back he made this very loud burp and Mike and I both looked at him and each other, and before we knew it, Roman was puking all over the floor. Thank goodness it was on the kitchen floor. After he puked, he seemed to feel better. Went to bed, woke up the next morning, and he was still not being his normal self. He wanted to keep lying down, which is NOT Roman at all. And we had plans to go to chruch with Derney and Duppy for 'Bring your grandkids to church day'. We debated on going and we decided to go anyway. Roman laid his head on my lap and on Mike's lap throughout mass. We also had plans to go to Big Boy after church. So, with Roman still not feeling to good, Mike took Roman back to Mom and Dad's house while the rest of us went to eat. When we got home yesterday, Roman seemed to be getting more energy and feeling a bit better.
 
Today, however, Roman had explosive poops. So, whatever he is fighting, is still very much going on in his little body. I just pray Sheridan doesn't get it now. And for that matter, Mike and I as well.
Roman and Sheridan are playing well together today...she is off from school for President's Day.
 
A little update on me for a change..... 
right before Roman got diagnosed, I went to an ENT doc for my thyroid. I actually felt something on my neck and it hurt to swallow sometimes too. He ordered an ultrasound and sure enough they found 2 nodules, one on each side. From that ultrasound, I had a biopsy done on the larger nodule on the right. For the life of me I cannot recall the exact outcome, except that I remember the doc telling me "eventually, down the road, you may be looking for your thyroid to be taken out".
 
Well, unfortunately, that's when Roman got sick and the rest is history. I never went back. Roman took priority of course. For the past 2 years, I have experienced many side effects like hair loss, irritability, nervousness, racing heart, being freezing cold even when I should not be with my hands and from my knees on down to my feet, being very sleepy, low energy, just on edge and short fused, and a feeling of something not being quite right with myself. Not to mention when I touch my thyroid area, it feels swollen or puffy and just feels "different".
 
I went to the gyno last Monday before Roman's scans last week for my annual, and told her about my symptoms, and she sent me for a blood test to check my thyroid levels (TSH) and also wrote me a script to have an ultrasound of my thyroid done again to see where we are. I got my results today from my blood test and it is a .33...............a normal thyroid range is about 4.0 to 5.0. So, as you can see, I am lower than I should be. I am having an ultrasound done this coming Wednesday morning. I also have an appt. with the same ENT doc from 2 years ago on this Friday afternoon to discuss results of thyroid levels and the ultrasound. I will keep all of you posted. It would not surprise me if I need to take medication for this or even have surgery to remove my thyroid because my Mom had thyroid issues and took a pill everyday of her life to help her thyroid problems. Just pray it is nothing serious for me. I just want to actually feel better for a change and feel like I am supposed to feel. I won't know how to act feeling "normal".
 
I also have some more prayer requests...Our sweet Corey (cp:coreynickell) is having a slow time of his platelets recovering from the last round of chemo. Please pray that they recover this week or his chemo for the next round will be adjusted at a lower dose. 
Also, our dear friends, the Melvilles, their son Joe has scans all this week and will not get results until Friday. Joe has scans every 6 months now. Melissa, we love you and are sending strength and prayers for this week and for Joe to remain NED! We also have a couple of our carepage families getting ready for scan week soon like Zebbie Dodge and Destiny Ross. So, prayers definitely needed for our dear friends as they go thru the most stressful of times for scans.
 
I also have one more prayer request...my dear friend and fellow ribbon maker, Rachel Re, had a biopsy done this morning on both of her breasts. 2 weeks ago, she went in for a routine gyno check up, and the doc found a lump in one breast. Then, she went to the specialist and that doc discovered another lump in her other breast. So, please pray for Rachel and her family now for good results. Rachel used to work with me at US Financial and she is mommy to Leann (4) and David (20 months). She has helped us many times with making our Gold Ribbons. Rachel, we are sending positive thoughts and hope for you right now.
 
OK...I think that is it. I hope all is well for everyone. I will keep you posted on Roman, myself and everyone else I asked you to pray for now. Prayers go a very long way and we appreciate them more than you will ever know. God, please keep blessing our Roman as you have. God, please give strength to all of the families in scan week or coming up for scans. God bless all of you! Jody, Mike, Sheridan and Roman Fariello
February 12, 2009
Hello to our family, friends and new friends!
PRAYERS ARE ANSWERED ONCE AGAIN FOR ROMAN...........NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! NO EVIDENCE OF DISEASE!!!!!!!!!!!!!!!!!!!!!
I could not take one more minute longer waiting today while in the room at clinic, waiting for Dr. Wagner to come in and give us the results. Polly, our nurse coordinator, walked by just as Mike took Roman to the potty, and I just let loose with tears. She gave me the OK sign and she held me as I was hyperventilating and crying really hard. She then of course went to get Dr. Wagner to come in right away and talk to us.
 
I told Dr. Wagner this round of scans seemed to bother me more than usual...but then as I got to thinking...as time goes by and the further we are out, the scans are definitely getting worse and much harder on me than all of the other scans previously. One of the many reasons for my feeling this way is that we are not ACTIVELY fighting this EVIL BEAST NB. We are just letting time go by us. Very scary. Another reason was the spot on Roman's liver they found on his last CT. Well, it got smaller in size this time from an 8mm to a 5 mm spot. Dr. Wagner ruled out NB due to the fact of the length of time in between scans and it did not get larger. So, that makes us feel ALOT better about the spot. Roman's labs were drawn yesterday and the results of his labs are just fine too. Today, Roman pee peed in the cup for the first time ever. He is such a big boy and has grown up so much! So, everything is good with Roman:) Thank You GOD for another 3 months:) 
 
As time keeps on going by, I am quite sure scan time will be even more stressful on us, if that is possible. I have not slept good in a week. I have been on the potty more times than I can count in the past 4 days. My eating habits and my WW points system got tossed out the window the past week. I have blood shot eyes. Our household has been on edge. Mike and I have had NO patience what so ever with the kids. I could go on and on but you get the point. Scan time makes for unpleasant times at the Fariello Household. I am glad we can breathe again for another 3 months.
 
There are alot of prayers that still need to be said for our fellow care page families and caring bridge families. Scan time for some of them still is coming. Some of them just got bad news. We will pray for them just as they have stood by us and prayed for Roman. It's what we do best all of us cancer families. We are there for each other even though we have never met. One thing is for sure...prayers go a very long way...this we know for sure today. God has blessed us with another 3 months. We are so very lucky to have the most precious gift with Roman...time:)
 
Thanks to all of you and your support for getting us thru another scan time. We could not make it without all of you and your emails, prayers and your encouraging words. It means the world to us.  I will update soon over the weekend. Right now, I am going to RELAX and finally breathe "NORMAL" again...whatever "NORMAL" is for us.
 
Go To www.Angelrockproject.com  to read my Angel of the Month interview with Malaak Compton-Rock if you have not done so already....and to all of our ribbon makers...get ready, I will be planning a Ribbon Day here at the house real soon!
 
God, THANK YOU for giving us 3 more months with our son. For we know there are many fellow cancer parents who do not have that most precious gift of time with their child. God, thank you for giving me the BEST mom- in- law ever. Thank you for allowing her to be here for us in our time of need as always. God, thank you for keeping our Roman safe in your hands as you have. Thanks to all of you and love to you! Jody, Mike, Sheridan and Roman Fariello:)  
February 10, 2009
Hello to our family, friends and new friends!
Well, we made it thru day 1 of STRESS! Roman attempted to do his Cat scan without "sleepy" meds but...he only made it thru a couple of pics and then started to cry. Thank goodness we already had the IV in his hand and they immediately put him to sleep. At least we tried and we know that Roman is NOT ready for scans without his "sleepy" meds. They missed the first time putting his IV in his right hand, then went on and got it in the left hand on the second try. He is so strong. Not one single move the whole time they were working on both hands. He is simply AMAZING! After his scan, we had to stick around and wait for 3 hours for his MIBG injection. So, we headed to the cafeteria and ate lunch and then hung out on the 5th floor lobby and watched some tv etc. Anything to kill time. Roman was really good though. Finally, at 1:30 we went to Nuclear Med and they injected him and he drank his thyroid protector stuff right down and then we left for home. VERY LONG DAY! All of us are exhausted. No results yet. Probably will not get them until our clinic visit on Thursday morning with Dr. Wagner. But, if I get some news, I will update as soon as I do.
Tomorrow, we have to be there at 8:30 for his MIBG scan. After he wakes up, we can come on home. Although, tomorrow, we will NOT be the only Fariello family at the hospital...our nephew Ian (Andy and Jenn's son), is having his tonsils and adenoids removed. He will be spending the night there for one night due to his age and to make sure he is drinking etc. So, prayers all around for both Fariello Families at Childrens tomorrow. Ian, we love you sweetie! You will be just fine. Just tell them that Roman is your cousin:)
 
The waiting for the results is needless to say EXTREMELY overwhelming. But, I gotta tell all of you, reading your comforting words and prayers in emails and on Roman's carepage, reminds me of the many blessings that keep us going, thru scan time especially. I really mean that. Without your support, this would be extremely more difficult than it already is. It is nice knowing we have so many amazing people out there for just us:) THANK YOU ALL from our hearts to yours. I am so exhausted right now, but I had to read all of them as they touched my heart. Mike and I and our family are truly blessed by all of you:) 
 
If you have not checked out my interview with Malaak Compton-Rock  (comedian Chris Rock's wife) PLEASE go to www.Angelrockproject.com and scroll down a bit on the right side till you see Angel Of The Month and click on my name and read the interview. It is amazing!
 
I hope I covered everything I needed to cover for now. Please continue the prayers for Roman and add Ian to your prayer list too. I will update again tomorrow sometime. God, please give me the strength to calm myslef down so I can get some sleep tonight. Scan week calls for very long nights of being awake and me being physically ill. I get sick thinking about the results and waiting for that phone call. God, please keep blessing our Roman and keep him safe in your hands as you have. We lift everything up to you.
God Bless! Jody, Mike, Sheridan and Roman Fariello:)
 
February 9, 2009
Hello to our family, friends and new friends!
I have great news to share...I know a while back, I told everyone about comedian Chris Rock's wife, Malaak Compton-Rock, who sent Roman an amazing donation towards his medical expenses. Since then, she has been an amazing supporter of our family and our journey. Malaak has a very successful website and mission called   www.Angelrockproject.com . It is with abundant gratitude and admiration that I can say I am honored that Malaak has chosen me for her ANGEL OF THE MONTH on her website. Malaak, THANK YOU again for putting the spotlight on Childhood Cancer. You are a very special person and will forever be in our hearts at the Fariello household.
 
I would love for everyone to go and check out my interview on her website. It is on the home page and if you scroll down a bit on the right side, you will see ANGEL OF THE MONTH. You will see my name and click on it. You will see pics of Roman, Sheridan, Mike and I. Along with my partner and co-founder of Rally 'Round The Gold Ribbon, Debra Nickell. Malaak reaches ALOT of people who want to make a change or a difference in our country and in our world with her mission. Again, we cannot thank Malaak enough for giving us this opportunity to get the word out there about our website and our mission for Childhood Cancer. It's a wonderful interview, please go and read it.
 

Well, tomorrow starts our scans. We have to be at the hospital by 7:00am for a Cat Scan. The scan will probably be around 9:00. Roman has to drink the contrast and then wait for an hour until they can scan him. It will be of his head, chest, abdomin and pelvis. Then, we will head to the cafeteria to eat lunch and then get his MIBG injection at 2:30. I am hoping that the injection will be a bit earlier than that. They will probably draw his labs on Tuesday for his MIBG scan at 9:00am. Mom will be here to help us all week with Sheridan.

The fear is driving me insane about these scans. The waiting is the worst part. I just want them over and done with. I am a nervous wreck and Mike and I are definitely on edge. I HATE what NB does to families like ours. There are all these different levels of fear and anger and sadness and every emotion humanly possible that happens to us. It causes me to stay awake in the middle of the night. It causes me to think about horrible things. It causes me to have these unfortunate conversations that keep replaying in my head about relapse. It causes me to be physically ill. I don’t like feeling that way, but I do and I cannot help it.

This rollercoaster ride we are on every 3 months SUCKS! And the worst part of it is that I feel guilty sometimes saying that because we are still so blessed to have Roman. He is breathing, sleeping, eating, growing, running, playing, talking, peeing and pooping on the potty, going to the dentist for the first time, going out to eat with us, going shopping with us, doing puzzles with us, making us laugh, making us raise our voices, and I could go on and on. And some of my fellow cancer parents are not so blessed. When I put our crappy 3 month rollercoaster ride up next to that, well…there is NO COMPARISON. When I think of my fellow cancer parents who have lost their children, I force myself to go there. It’s a dark scary place and I don’t like going there. But I have no choice…reality unfortunately rears its ugly head right in my face and I am forced once again to think about Roman and our own family. It’s very hard not to internalize their stories about death and how it happens with their kids. How could I not think about Roman when dark reality proves to me all the time that he could be taken away from us in a split second. And then I start immediately thinking about Sheridan and how it would change her or affect her.

I know, I can already hear people saying “c’mon Jody, be positive, Roman’s gonnna be just fine”…well…….if I let myself be that positive, I would be setting myself up for a huge fall if God forbid Roman were to relapse. I know and Mike knows NB is EVIL. We know the odds. We know the numbers. We know that dark world all too well.

But we also know the power of prayer. We know the power of faith. We know there are soooooo many amazing people who support Roman and our family each and every single day. We know that without all of that, we would not and could not have the strength to keep on going as we have. Just please take a moment and pray for Roman the next 2 days. Whatever happens is out of our hands and not in our control. It is a very hard place to be, being cancer parents during scan time...we want good results, but we also know our reality for Roman and the reality of NB.

 I will update as soon as I get a phone call from Dr. Wagner with CT results. God, thank you for blessing us with wonderful people in our lives like Malaak Compton-Rock. God, please give Mike and I the strength to be strong for Roman thru scans this week. God please give Sheridan the peace of knowing that even though this is not a "normal" week for us and the household, things will be as close as "normal" for her as possible. Please give us the patience we need for each day. God, please keep blessing our Roman as you have.  God Bless all of you! Jody, Mike, Sheridan and Roman Fariello:)        
February 6, 2009
Hello to our family, friends and new friends!
It is with a sad heart that I report heaven just got a bit more crowded today with the passing of Jessica Rose. I just told you all to pray for her in my last update. I am extremely sad as Jessica was the second child I started to follow right after Roman was diagnosed in April '07. She was such a beautiful child and such an amazing family she had. Her mom Maureen is a fighter and a wonderful mom. She also leaves behind older brothers. I cannot believe that NB has struck again. I cannot believe that she is gone. Jessica was in every sense the little PERFECT PRINCESS. That is how I can best describe her to you. Just an absolute beautiful child. I am sick with grief for Maureen and their family. Please, please go to their website and leave them a message of support. Tell them how you know Roman and me. It would mean alot to me if you did this. Maureen needs all the support and prayers and strength right now that can possibly have. Jessica's website is www.care4jessicarose.org  Again, please go to their website and leave them a supportive message. 
 
Roman and Sheridan went to the dentist yesterday...Derney had to take them because I had a migraine from h%$# yesterday. Anyway, Sheridan is fine...no cavities, no problems. Roman however, has some problems. He has damage from the chemo and all of the drugs he was taking on his four front top teeth. Maybe some areas of concern on the bottom too. The plan is to put him on a stronger perscription toothpaste for a couple of months. See the doc in 3 months from now. Evaluate him again and decide when to put some caps on the teeth that are damaged. He will have to be put to sleep for this. He cannot do the "cheaper" route like sealants that most kids get, because there is something in them NUT related so... with Roman having a peanut allergy, that obviously rules him out of that option. Our nurse coordinator Polly is going to try to coordiate this dental work while Roman is under for a set of scans in the next 6 months. Hopefully, that will be the case. I will keep you posted on things of course.
 
I have much more to talk about with everyone, but with the news of Jessica Rose today, I am just not in the best of moods right now. My heart aches as another child is taken away from her mommy and her family. And with Roman's scans next week, all of you can imagine how I feel right now. God, please give Maureen and family the strength they will need from now on each and every day without Jessica. God, please keep blessing our Roman as you have. God Bless! Jody, Mike, Sheridan and Roman Fariello       
February 1, 2009
Hello to our family, friends and new friends!
I cannot believe it is February already! Happy Birthday to my nephew Noah today he is 12! And, I am so not a sports person but I think I am going to cheer for the underdog for the Superbowl and not the Steelers!
 
Ok, now down to serious business...I have a few prayer requests...
One of the little guys I have been following for a long time relapsed (Neuroblastoma) and it is far worse than the original diagnosis. His name is Hayden Wion. Please say some prayers of strength for his family now.
 
Also, another Neuroblastoma Warrior needs some prayers. Jessica Rose is hanging on, literally, after receiving contaminated Platelets from a transfusion. The platelets were given to Jessica like they always are, but this time she got deathly ill. The chance of this happening is very rare and unfortunately it happened to sweet Jessica. Please pray for her to recover without any dammage done to her heart or any further complications. A machine called an echmo is pumping her blood for her. Maureen, we are praying for your sweet Jessica and your family. Sending nothing but strength for you and your family and of course for Jessica. Jessica Rose is the second child I started to follow after Roman got diagnosed. So, very close to my heart.
 
And, more bad news to share with all of you..."Our Angel"  Lauren, just lost her grandma (her Dad's mom) the other day to cancer and complications. I know Lauren was very close to her and will miss her deeply. And it's even worse because all of you know that Lauren and Joey are stationed overseas and cannot be here for the services. So, please say some prayers for Lauren and her entire family. Lauren, we love you and miss you and are praying for you all!
 
OK...I think I am done with bad news hopefully. We need even more prayers for all of our friends who have up-coming scans along with Roman...Bradley Jude cp:bradleyjude and Zebbie Dodge cp:ZEBSpage and Chloe Hightower cp:chloehightower   It will be a busy time for prayers. All of the above kids, along with Roman are NED and have remained NED just like Roman. All of us parents feel the exact same way around scan time. The fear is completely unbearable.
 
I am quite sure I forgot some kids but I will add them. I follow so many kids (unfortunately too many) so my mind goes a bit haywire around scan time to try to remember all of the kids.
 
I will leave you with some fun pics. Enjoy them!
 
 
God, please keep blessing our Roman as you have. Every moment of every day is so important and priceless. God Bless! Jody, Mike, Sheridan and Roman Fariello