30 DAYS/30 STORIES® 2021
My son, Travis, was diagnosed with an inoperable brain tumor when he was eight years old. He had no symptoms. He was a perfectly healthy, smart, athletic eight year old, who played outside every chance he got, loved riding his bike and was a skilled soccer player. School was a breeze, and he was nearly never sick. One night in 2010, full of eight year old bravado and foolishness, he rode his bike down a flight of stairs. That’s how we found his brain tumor. A trip to the ER for a suspected concussion started us on a path that I never could have imagined.
The tumor was determined to be stable, but fluid was accumulating around his brain, causing pressure. Travis needed a shunt to help his ventricles drain the fluid properly. Brain surgery was six weeks after his bike accident. During that surgery, the neurosurgeon was able to get a small piece of tumor to get pathology. The day after Travis turned nine, we got the news that his tumor was not aggressive. It is officially grade II, which I foolishly thought was good news. The truth is the brain fits perfectly within the skull. Anything in there that doesn’t belong causes trouble. The biggest difference between a high grade and a low grade brain tumor is how quickly it will kill a person if its growth is unable to be controlled. High grade tumors can take a life shockingly quickly. Low grade tumors slowly, torturously shut down mental and physical functions until the patient dies. The tumor Travis has is a diffuse infiltrating glioma. Essentially, it’s not a solid mass; it’s cells with errors, invading healthy tissue. Imagine it being more like freckles than like a mole.
Travis had two years of stable tumor, which lulled us into a false sense of security. When Travis was ten, a scan showed tumor progression as well as shunt malfunction. Brain surgery #2 was scheduled to revise the shunt and get it back in working order. The day before his eleventh birthday, Travis started chemotherapy. He was in treatment for twenty-one months. He hit some really low points during his course of treatments. He needed a feeding tube, multiple blood transfusions, multiple hospital stays and about a million hours in the car, running back and forth to Children’s Hospital of Philadelphia. His tumor is currently stable and has been stable for almost seven years. We had a scare about a year ago. The tumor was indicating it was potentially getting ready to grow; but so far, it hasn’t. This will be a lifelong thing for Travis. His tumor type has very little research. He has no odds, no prognosis. There is no amount of time that stable tumor lessens the likelihood of growth. The official word is the tumor carries significant risk of progression and/or transformation (to a more aggressive tumor).
Shortly after Travis started chemo, we found PCFLV, or more precisely, they found us. The then Executive Director reached out to me after a friend told her about Travis. Throughout the past eight years, we’ve been supported in so many ways by PCFLV and the amazing folks who make it all happen. I’ve watched PCFLV and Travis grow together. He attended the very first Camp Smile and continued to attend until he aged out. Then he became a counselor in training, then a full-fledged counselor. He absolutely loves being able to give back. Even more, though, he loves the opportunity to work with kids with cancer and be a role model for them. We have been trick-or-treating at the Iron Pigs stadium when he was younger. We have been gifted tickets to Iron Pigs games and Phantoms games. We’ve been given gas, restaurant and grocery cards. We have been treated to family meals. I have been treated to pampering for moms and painting/arts & crafts nights. We have made lifelong friends. We are grateful to PCFLV for all they do to support families like ours.
Written by Travis’ mom, Beth
Please consider donating in Travis’ honor to support PCFLV's mission.
Please also consider helping local kids with cancer by donating blood at Miller-Keystone Blood Center: