In June 2015, after episodes of headaches, double vision, imbalance and nausea we took Ben for an MRI which revealed a mass on his cerebellum - a malignant tumor categorized as Medulloblastoma. In the following months he had two brain tumor resections, a spinal tap, placement of a port in his chest for chemotherapy and more than 30 radiation treatments to his brain and spine. From September to the end of December of the same year, Ben spent more than half of each month in the hospital for a stem cell transplant and 4 rounds of high dose chemotherapy. The surgeries and treatment protocol left him with weakness and ataxia on the left side of his body, hearing loss, baldness, double vision, difficulty walking and issues with balance. He continues to face challenges with executive functioning, memory loss and speech.
In December of 2020, 5 years out of treatment, Ben was classified as a "survivor". While it is certainly a tremendous milestone and one we celebrated, the long term side effects still linger and he will face annual MRIs for years to come.
I hope that our story of Ben and his battle with this deadly disease will put a face to the statistics that people read. I hope that when they see this courageous young man they will think about children in their life who could face a life altering brain cancer diagnosis and have their life changed immediately. I hope it generates awareness around the lack of funding for research and development of drugs and trials for children and encourages people to donate money to LBF.
Age at Diagnosis:
7 years old
Age Now :
Type of Brain Cancer:
Summary of Treatment:
-2 brain tumor resections, -30+ radiation treatments -Stem cell transplant
-4 months of chemo
-Months of in-patient physical and occupational therapy
"Ben has always been a normal fun-loving happy child. He never wanted to be in the “spotlight “ but unfortunately was thrust into it. For a walk to raise funds for childhood cancer awareness, family and friends were asked for words that describe Ben to be put onto t-shirts. Some of them are: courageous, perceptive, smart, enthusiastic, curious, thoughtful. He is all of these but two that jumped out at us are brave and hero. Ben never complained about the long process to recovery. In fact one time he said: don’t worry Papa, it will be ok. Indeed he is our brave hero, not only for all he has endured, but also how he continues to handle himself." -Sal Bellavia, Ben's Grandfather
Together we can save the lives of kids like Ben.