By Cindy Campbell
My husband and I were introduced to the world of pediatric brain tumors when our perfect, beautiful little boy, Ty, was diagnosed with a rhabdoid tumor on the brainstem at 2 years and 10 months old. He died 13 days after his fifth birthday in October 2012 and we are left to pick up the pieces of our broken lives.
Throughout Ty’s journey, and ever since his loss, Lou and I have been actively involved in getting to know other families like ours, and getting to know the doctors who are committed to helping these children through much needed, grossly underfunded research and clinical trials. We are in constant awe of the men and women who have devoted their lives to pediatric neuro-oncology and pediatric neurosurgery. Doctors like Jeff Greenfield and Mark Souweidane.
Of course, there are thousands of scholars, researchers, and doctors who selflessly devote their time to helping others. Searching for a cure. But let me tell you why a career in pediatric neuro-oncology is so very remarkable to us both.
First and most obviously, because we are talking about children. Little babies who don’t understand why magic kisses can’t make their boo-boos go away. Many of these veterans (including Jeff and Mark) have small children of their own, and instead of being turned off by how difficult it is to imagine their own children as patients, they are inspired to make sure these children are getting the best possible care and hope for a future. It takes a very special heart to be so devoted to a cause that may frighten others.
Then there is the reality of pediatric brain tumors. When a brain or spinal tumor is involved, the detrimental effects are that much more severe. The sad reality of pediatric brain tumors is that they steal so much from the child. The ability to speak, eat, walk, play, and more can all be seen slowly slipping away as tumors progress. Brain and spinal cord tumors are the second most common of all cancers among children, and brain tumors include the deadliest of all types of childhood cancers (with survival rates of 0% in many cases).
When a child is diagnosed with a brain tumor, the deterioration is like nothing you could imagine or prepare for. My son, for example, was 100% healthy before the dreaded diagnosis. He met all of his developmental milestones and at 2½ years old was enjoying the use of his improving vocabulary. His sense of humor was evolving and knock-knock jokes were becoming a new favorite (although I don’t think he truly understood the punchlines—at least not as much as his larger-than-life laughter would express). He loved discovering new foods to snack on and the playground was a daily triumph where he overcame fears and learned new tricks. The “high slide” was his latest feat and his adorable smile was bursting with pride as he climbed that ladder over and over again.
His cancer story starts like everyone else’s. At night, he seemed uncomfortable. He didn’t sleep well. Finally, it was time to do more than talk to the pediatrician, so we insisted on an MRI. Thus, it began. Slowly, over the course of two and a half years in treatment, we watched as he was robbed of all the childhood joys. From the time of his very first surgery he never walked independently again; he spent more than 250 nights in the hospital; his speech became compromised; he was often unable to swallow or clear his own throat; he was in pain more often than not; and he never had the chance to enjoy another day on the playground.
As his parents, we needed to do more than just watch. We searched high and low for new treatment options, we educated ourselves on the research landscape, and we exhausted all resources. We could not save our son, nor could his doctors… but we do believe that someday there will be another boy just like him who enjoys a beautiful future thanks to the dedicated work of the doctors and researchers at The Children’s Brain Tumor Project. For that tremendous gift of hope, we are forever grateful.