A pediatric brain tumor diagnosis is a devastating disruption to a family’s life. In an instant, the normalcy of childhood is replaced by hospital rooms, medical terminology, and an agonizing waiting game. For Wayne and his teenage son, Finn, the journey began suddenly during what should have been a carefree summer.
Their story is a powerful testament to the resilience of families facing this disease. Through expert guidance, personalized support, and the courage to finally speak up, they found a path forward. We hope their experience offers comfort and direction to other families navigating similar challenges, proving that no one has to face this journey alone.
The timeline of Finn’s diagnosis moved with terrifying speed. On June 27th, doctors discovered a tumor. By the very next day, Finn was undergoing emergency surgery to relieve the dangerous buildup of cerebral spinal fluid that had been causing severe nausea and headaches.
While the surgery addressed the immediate crisis, the family was thrust directly into the hardest part of the early journey: the wait. A biopsy was taken, but it took two and a half grueling weeks for a formal diagnosis to return.
During those agonizing weeks of uncertainty, Wayne realized he needed help. He began searching for people who understood what his family was enduring. He reached out across different platforms, filling out forms and searching for a lifeline. That lifeline arrived in the form of the Pediatric Brain Tumor Foundation.
About a month into their journey, Wayne connected with Eileen, a Family Navigator with the Pediatric Brain Tumor Foundation. With more than 30 years of experience in pediatric oncology, Eileen brought a wealth of knowledge to Wayne’s overwhelming situation.
For Wayne, the support Eileen provided was transformative. Unlike the highly clinical and formal relationships he had to maintain with Finn’s medical team, his conversations with Eileen were refreshingly real. She offered a safe space to speak freely about his fears, research, and options.
“She has a calming demeanor about her that doesn’t cause anxiety,” Wayne shared. “It was more than just hearing me out and listening. It was also this really helpful feedback that then I was able to take… and go back and have a better conversation with Finn’s doctors.”
Eileen didn’t just listen; she empowered Wayne. She validated the intensive research he was doing, provided perspective on treatment options, and helped ground his nervous system during the most raw stages of Finn’s treatment. Because of the generosity of our supporters, families like Finn’s have access to this vital, expert guidance right when they need it most.
For teenagers, a cancer diagnosis brings a unique set of emotional hurdles. Adolescents are in a stage of life focused on fitting in, building friendships, and finding independence. A brain tumor shatters that delicate normalcy.
Initially, Finn wanted to keep his diagnosis a secret. When well-meaning friends asked why he was in the hospital over the summer, the influx of messages felt like a heavy burden.
“I did not want anybody to know,” Finn admitted. “I just didn’t want more input than I was already facing. It was just an overload of information.”
Finn tried to maintain a sense of control by minimizing the situation in his own mind. He told himself, “I don’t have cancer, I just have a tumor.” If he kept it out of his mind, he reasoned, it didn’t exist. He just wanted his past life back.
However, Finn soon realized that holding everything inside was taking a massive toll. The scattered thoughts and racing fears were keeping him awake at night. Eventually, he agreed to join a teen support group. In fact, he was the founding member of a local group, showing up even when he was the only teen in the room. Over time, as other teens joined, Finn found that opening up and leaning into the uncomfortable conversations actually brought him peace.
Both father and son learned a critical lesson during this journey: keeping your fears locked inside only gives them power over you.
Wayne learned this the hard way. Early on, he decided he was going to carry the entire burden for his family. He refused to smile until his son could smile. But this intense internal pressure eventually caught up with him physically, resulting in a terrifying spike in his blood pressure that sent him to the emergency room.
That health scare was a wake-up call. Wayne realized that to properly advocate for his son, he had to take care of his own mental, emotional, and physical health. He leaned into support systems, talked through his fears, and found his footing.
Finn experienced a similar breakthrough. “Just having a place to put your thoughts and whatever you’re thinking… helps tremendously,” Finn shared. “It just helps me take my scattered thoughts and align them more so that I can just see them instead of just racing around my brain.”
Speaking up strips the fear of its power. Whether you are a patient or a caregiver, finding a trusted person to listen can change the entire trajectory of your mental health during treatment.
Every child diagnosed with a pediatric brain tumor deserves the opportunity to thrive, because anything less is unacceptable. At the Pediatric Brain Tumor Foundation, we lead the way in funding childhood brain cancer research, supporting families, and advocating for policies that help patients and survivors.
If your family is currently facing a diagnosis, please know that you do not have to walk this path in silence. Just as Wayne found a guiding light in our Family Navigator team, we are here to support you with expert guidance, trusted resources, and an empathetic community.
Speak up, reach out, and let us help you carry the weight. Contact the Pediatric Brain Tumor Foundation today to connect with a Family Navigator and discover the resources available to you and your child. Together, we can navigate the road ahead.
Janet has supported PBTF for 24 years since her late husband Ronnie introduced her to Ride for Kids in 2012. Inspired by young survivor Xavier and continuing Ronnie’s legacy after 2022, their Houston Ride has raised over $1.3 million.
