Now five-years-old, Bryson Gencarella was diagnosed with stage 4 neuroblastoma in December 2022. His diagnosis provides parents with a master class in listening to your children, following your instincts and proactively seeking medical expertise when the prevailing opinion does not feel right.
The first clue to Bryson’s diagnosis occurred when he was waking up in the middle of the night and pointing to his lower right abdomen. It happened a few nights in a row, raising concerns for his mom, Tricia. After a few weeks, Tricia noticed Bryson was limping and complaining of being in pain at preschool. Before long, when he would wake up in the night, Bryson would cry out, “Mommy, I need you.” On one of these nights, Tricia felt a little bump in his stomach. The pediatrician thought he was just constipated – but the bump did not go away. Tricia took Bryson to another pediatrician for a second opinion and this physician immediately referred them to CHOC Hospital in Orange, CA. That same evening they learned that Bryson had an aggressive neuroblastoma and started a four-week stint at CHOC. This was the beginning of his cancer treatment, a 16-month-long plan with three intense phases.
Now, one year into treatment, this strong, resilient boy has completed phase 1 with no detectable cancer. The tumor that had filled more than half of his abdominal cavity is gone, as is all evidence of the disease in his bone marrow.
For phase 1, Bryson received the standard care of treatment. He underwent five rounds of chemotherapy and surgery to remove as much of the tumor as possible. He also was randomly selected to participate in a clinical trial to receive i-MIBG Therapy, a method deemed very effective for relapsed patients. That is why the trial places it at the front end of treatment with the goal of decreasing relapses and increasing overall survival.
Bryson is currently receiving phase 2 of the treatment and is undergoing two rounds of bone marrow/stem cell transplants. The hospital stays are four-six weeks at a time and are physically and emotionally debilitating because of the high doses of chemotherapy that are used.
After completing phase 2, Bryson’s survival rate will increase to 50% and the completion of phase 3 is expected to lead to a 70% survival rate.
Neuroblastoma is a rare cancer that develops in a part of the peripheral nervous system called the sympathetic nervous system. It is diagnosed in about 700 children in the United States each year. Since some of the sympathetic nervous system cells are concentrated in the adrenal glands, which sit above the kidneys, neuroblastoma often starts growing there. Doctors and scientists don’t yet know what causes this cancer but are working hard to find out.
As the family dedicates their every thought and action to his care, Tricia Gencarella offers these words of advice to parents everywhere:
“Be your child’s best advocate. Don’t ever think you are being too pushy. Get second opinions and be certain to get the answers you want – and your child needs.”