Weathering the Storm Following A Neuroblastoma Diagnosis and Bone Marrow Transplant
When Roman was diagnosed with neuroblastoma at 18 months old, we were solely focused on his survival. Receiving a diagnosis like this felt like a typhoon and a tornado hitting us at the same time. Complete devastation and total helplessness.
Thinking about the future and the effects of his treatment were too far down the road and honestly, we didn’t know if we would get there. I knew the statistics; only about 33% of kids with this type of cancer survive. Neuroblastoma is a solid, malignant tumor that forms outside of the cranium and can affect the sympathetic nervous system.
We feel fortunate that he received treatment at a Cancer and Blood Diseases Institute where they consider not only the current treatment, but how that treatment might affect him in the future. Because at the time, we couldn’t think about the future. We could only take it day by day.
How It Began
In April of 2007, Roman hit his head on a toy wooden barn. We took him to the pediatrician because the bump on his right brow bone didn’t go away. They referred him to an ophthalmologist and they said if it doesn’t get better, they’re going to recommend a CT scan. He had a CT scan on April 25 and the storm collided into us. Stage 4 high-risk neuroblastoma.
What Treatment Entailed
He endured over a year of treatment, including six rounds of chemo and one round of high dose chemo to prepare for a bone marrow transplant. He had a bone marrow transplant that following October. Then another 12 rounds of local radiation to his abdomen and five subsequent months of oral chemo at home. He’s also had many surgeries and blood and platelet transfusions.
Approaching His “Second Birthday”
This October will mark 12 years since he had his bone marrow transplant, a milestone in which many consider a second birthday. It’s a second chance at life, and he’s making the most of it. Sure, he faces some challenges, but they pale in comparison to the first storm we weathered.
Due to the age he was diagnosed and the many treatments he sustained, he has:
- High frequency hearing loss in both ears
- Small permanent teeth
- Blood in his urine
- Minor scoliosis of the lower spine
- Minor heart rhythm problems
- Slower quick-recall memory
It may seem like a lot, but given what he’s been through, we consider ourselves incredibly fortunate. Following any storm there’s rebuilding and rebuilding we have done. He visits the Cancer Survivorship Center annually to get a full work-up and to make sure that the cancer doesn’t return. They help coordinate care for any subsequent specialists we need to see, like ENT, dentistry, cardiology and orthopedics, because his health problems might look different in him from other kids who haven’t had cancer. They also talk to him about further things he can do to maintain a healthy lifestyle.
The rebuilding has been slow and steady. Roman is now 13 and in the 8th grade. Because he was so young when he was diagnosed, he doesn’t remember much. In fact, he’s doing so well now that he doesn’t think about cancer at all. He’s focused on school, his friends, and the weather.
Roman loves meteorology and wants to become a meteorologist one day. He’s obsessed with the data, analysis, and creating time lapses. Given the storms he’s weathered since he was 18 months old, I think it’s the perfect fit for him.