On April 25th 2007, our son Roman was diagnosed with High Risk Stage 4 Neuroblastoma. At only 18 months of age, he showed no symptoms other than a black and blue very swollen right eye. It didn’t help that about 3 to 4 weeks before we noticed his eye being swollen, he had fallen down on a wooden barn toy and hit the same eye. We thought maybe he broke a brow bone or hurt something from falling on the toy. Our pediatrician referred us to an eye doc to make sure Roman’s vision wasn’t affected when he fell on the toy. The eye doc wanted Roman to come back in a week if the swelling didn’t go down. It didn’t go down at all. We went back to the eye doc on April 24th and he scheduled a CT scan of Roman’s head for the next day at Cincinnati Children’s Hospital at 1:00.
We took Roman for his CT scan on April 25th, 2007. We got to be in the room with him because they used sedation to put him to sleep. We had absolutely no idea that the nurses who were in the other room looking at Roman’s CT on the monitor, were alarmed with what they saw. I did however notice one nurse who kept looking in my direction as I held Roman’s hand. Looking back, she was obviously sad for us with the news we were about to get.
They wheeled him to a recovery room with a nurse and then put us in another room so we could see him still. The next thing we know 4 docs came in and sat right across from us. We knew immediately that some form of bad news was coming, but had no idea that our lives were about to be turned upside down and inside out. I like to put it as “we were about to get a new pair of eyes and see everything in a completely different way”. They told us Roman had a tumor. They wanted to do more scans and blood work to find out more. Later that day, it was confirmed that Roman had High Risk STAGE 4 Neuroblastoma. After more testing, cancer was found in his bone marrow, a tumor on his right adrenal gland and a tumor above his right eye. That fear is unexplainable what my husband and I felt that day. There are no words for it.
He went into surgery 2 days after that on a Friday to remove his right adrenal gland, lymph node and the tumor itself. The tumor was about the size of a quarter. He also had a central line put in. On that following Wednesday, Roman started chemo. He completed 6 rounds of induction chemo. He also harvested his own stem cells after round 2. He had a 7th round of high dose chemo to knock out his bone marrow for a stem cell transplant he had on Oct. 17th, 2007. The chemo did shrink the tumor above his right eye, thank God. After somewhat recovering from his transplant, he had 12 rounds of local radiation to his abdomen. After that, he took only 5 rounds of oral chemo (Accutane) at half the dose, because he experienced a lot of issues from the Accutane. Among them were very high triglycerides, head pressure and headaches, rashes on his legs and severe rage. Roman didn’t get any line infections or anything out of the ordinary while on his protocol. He was on so many drugs and had numerous blood and platelet transfusions throughout his protocol treatment.
We are, as we have come to find out from many other families’ journeys, VERY blessed that Roman even survived protocol at all. Not many kids make it through to the end with little or no complications.
Roman’s health today is that of a “normal” 8 year old little boy. Looking at him you would never know what his little body has survived and been thru. He has a very slight high frequency hearing loss in his right ear. Not even enough to warrant a hearing aid. As of to date, Roman has no health issues. Roman has an annual check- up at the Cincinnati Children’s Hospital Survivor Clinic. He has a complete head to toe physical, an echocardiogram on his heart to check for chemo damage and bloodwork. I would say that Roman is a walking miracle! This journey is an ongoing journey for Roman. So far, Neuroblastoma has feared him and has left him alone. We pray daily that Roman gets to grow up and do huge and amazing things with his miracle life that God has given him.
Please pray for me and all children fighting for their lives. My family and I thank you for your prayers and support.