Neuroblastoma is a type of cancer that mainly affects young children. Approximately 600 children in the United States are diagnosed with neuroblastoma each year.

Most neuroblastomas start in the abdomen. Roman's cancer originated in his abdomen and spread to his head and bone marrow. It can also begin in the adrenal glands, neck, chest or pelvis. The cause of neuroblastoma is unknown.

The treatment of neuroblastoma and cure rate varies for each child. Children with tumors that have spread to the bone and bone marrow may need chemotherapy, radiation and stem cell transplants.

The Hard Cold Facts

*Neuroblastoma is the most common cancer in infants with an incidence rate of almost double that of leukemia, yet most have never heard of it.
*Neuroblastoma is predominantly a cancer of early childhood, with two thirds of the cases presenting in children younger than 5. The average age at diagnosis is 2 years old.
*Neuroblastoma is a solid tumor cancer that originates in the nerve tissue of the neck, chest, abdomen or pelvis, but most commonly in the adrenal gland.
*It is a very aggressive cancer with almost 70% of children having mestastatic disease (spread to other parts of the body) at diagnosis.
*Neuroblastoma is the third most common cancer in children under 18.
*Neuroblastoma has one of the lowest survival rates of all pediatric cancers.
*The survival rates of high risk children is 30% at best.
*There is no known cause or cure.

We must do better!
* In the past 20 years only one new cancer drug has been approved for pediatric use.
* Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.
* September is Pediatric Cancer Awareness month, which nationally goes largely unrecognized.
* 14,000 children will be diagnosed this year with cancer. That is the size of 2 average classrooms every single day, year after year.
* Currently there is between 30-40,000 children being treated for cancer in the US .
* Pharmaceutical companies fund over 50% of adult cancer research, but virtually nothing for kids.
* Pediatric cancer research does not receive nearly as much funding as adult cancer research projects. Neuroblastoma research dollars are scarce as most money is diverted to well-publicized adult forms of cancer.
* Historically, advances in pediatric research have yielded treatment models and genetic information that greatly benefit adult cancer patients. (This is well documented by professional research cooperatives like the Children's Oncology Group); the reverse is not always true.

Hello to our family, friends and new friends! This is from AJ's dad, Bob, who does the absolute most amazing research for all children battling childhood cancer. Bob lost his son AJ earlier this year. He is one amazing cancer parent and one person who I personally have grown to admire with each post he does for his son on their carepage and the PAC2(People Against Childhood Cancer). His research is incrediable and shoule be made aware to the general public across our country. Please read this all the way to the very end... Thanks! Jody


 We have all been lead to believe that childhood cancer is rare.   And, when you look at the number of cases, it is.   But, is the number of cases the only number we should be looking at when comparing it to other cancers?   I don't think it is.   I think we should also look at the total number of years of life lost (Person Years Life Lost or PYLL) for each cancer.    How much potential life is stolen by each cancer. And then compare funding based on the number of years of life lost for each cancer.   The funding dollars per life year lost. Basically, a method to "level the playing field" and compare apples to apples.  

For example, the average age for a new case of prostate cancer is 68 years old, and the 5 year survival rate is 99%. That means that 1% of those new cases will die within 5 years, at or before age 73.  The average age of death from all causes in the US is 77.   So, on average, each case of prostate cancer results in a loss of 4 years of life (PYLL). 

So then we calculate the total number of years of life lost (PYLL) for prostate cancer.   In 2007 there were 186,320 new cases.  The latest 5 year survival is 99%.  So, of those new cases, there will be 1,863 deaths from prostate cancer within 5 years.   As we said above, each case represents 4 years of life lost.   So, 1,863 deaths x 4 years of life lost = 7,453 total years of life lost (PYLL). 

Then we look at funding.   Prostate cancer received $15 million in 2007 from the American Cancer Society.   So, $15 million divided by 7,453 years of life lost = $2,013 per year of life lost.  

Is that good or bad?   Well, you have to do the calculations for each cancer and compare the answers. 

First, lets look at the number of life years lost for the 10 most prevalent adult cancers and include childhood cancer.

Childhood cancer results in the fifth highest number of life-years lost to any type of cancer. This FACT alone should eliminate any discussion of the "rareness" of cancer in children. A total of 178,750 potential life-years are lost to childhood cancer.

These are life's that NEVER get a chance to VOTE or ADVOCATE for more funding! Life's that NEVER get to DEMONSTRATE and PROTEST in front of the White House on September 13th!

Ok, so now to be fair to everyone with cancer, let's make sure the funding for each potential life year lost is equal.


Surprise, surprise, it's NOT! And guess who's at the bottom of the list? So, after "leveling the playing field" we can see that funding is simply NOT fair and equitable for all types of cancer! And childhood cancers get the lowest amount of funding per year of life lost when compared to the 10 most prevalent adult cancers. Guess who votes? Guess who advocates?

So, don't ever be swayed by the "rareness" of childhood cancer.  And don't ever let them tell you the funding is based on the number of cases.   That's the lie.

I mean if you compare the number of rifle and machine gun bullets expended in World War II, the number of atomic bombs dropped was "rare". But the effect was just the same.....

All data is directly from the following sources:

Because AJ and these kids never get a day off.........

AJs Dad

love you buddy......