Meet Tyler, he is 9-years-old and in remission from neuroblastoma.
Tyler was diagnosed with stage IV neuroblastoma when he was 5 years old. He had been feeling off for about a month with stomach pains, tiredness, and lack of appetite. However, his fraternal twin brother had the same symptoms, but not as intense, so we thought it was just a virus.
I remember one night, he couldn’t sleep due to intense recurring stomach pains, so we took him to the ER. An x-ray was first administered as we initially thought it’d only be an obstruction, but then an ultrasound was performed on his abdominal area and revealed a 13cm tumor. We were immediately ambulanced to a hospital with a pediatric oncology group and were told that Tyler had cancer. Upon receiving the biopsy results, we learned that his cancer was a stage IV high-risk neuroblastoma and that it had spread to other parts of his body as well. He started chemotherapy shortly after. Our lives were changed forever that week.
Tyler has since endured many treatments, including 8 rounds of chemotherapy, 3 surgeries, 12 sessions of radiation, stem cell harvest and rescue, and 5 rounds of immunotherapy. Once he reached remission, he even participated in a yearlong clinical trial with 7 injections of an experimental neuroblastoma vaccine. Tyler received these treatments in California and New York.
Although Tyler is doing well, he does have life-long side effects from his treatments. He has issues with hearing loss, growth, chronic GI, and is closely monitored for issues with his heart, lungs, and secondary cancers. He will most likely be infertile as well. He has routine scans and tests every few months to ensure that the neuroblastoma has not returned and for the other possible late effects. However, Tyler brushes it all off with laughter, humor, and innocence. He and all of us know that he is very lucky to have survived and is thriving. He is coming up on his 3rd year of remission!
During this journey, we have lost too many friends from cancer that didn’t respond well to treatments or harsh side-effects, so we will always continue to advocate for research funding for better, less-toxic treatments. Our motto is: awareness is funding is research is cures!