Bennett’s Story

by Beth Benker

On April 16th, 2019, our family said goodbye to my beautiful, beloved nephew, Bennett; he was 23 months old.

Bennett was diagnosed with an Optic Glioma, a brain tumor that grows near the eye's optic nerve, the nerve that connects your eye to your brain, on August 6th, 2018. For the next 9 months, Bennett and his parents would call Boston Children's Hospital home. While hospitalized, the shunts to control his hydrocephalus, or water on the brain, would fail repeatedly, requiring countless procedures, surgeries, and MRIs. He would have seizures and strokes, leaving him with paralysis on his right side. Eventually, Bennett would lose his eyesight. Throughout all of this, he never lost his sweet, silly sense of humor and his crooked smile was a source of joy to all who loved and cared for him.

On a sunny Thursday afternoon in early April, I answered a call from my sister. There was nothing more that the doctors could do for Bennett. His shunt had failed again and another surgery was too risky. Rachel and Phil made the unbearable decision to put Bennett on hospice. Five days later he passed away peacefully surrounded by his family.

On March 5th, our family will host our 2nd annual Polar Plunge to raise money for the PLGA Foundation, A Kids' Brain Tumor Cure Foundation, which funds research and also provides information for parents, patients, families, clinicians, researchers, specialists, and other non-profit institutions seeking information about the most common forms of pediatric brain tumors. If you would like to help us find a cure, please consider donating to Bennett's page by clicking here.