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, difficulty walking and issues with balance. He continues to face challenges with executive functioning, memory loss, and double vision.
In December of 2020, 5 years out of treatment, Ben was classified as a "survivor". While this is a tremendous milestone and one we celebrated, the long term side effects are something he will have to live with and he will face annual MRIs for years to come. It is important that we continue to focus on curing this disease while also fighting for improved therapies that will afford these children better quality of life.
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 people 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 that Ben’s story and the mission of LBF helps to generates awareness around the lack of funding for research and development of drugs and trials for children and encourages people to donate money to this incredible foundation.