Children with brain tumors and their families deserve to be seen and heard. The following stories feature families' and survivors' perspectives about the cancer journey from across the pediatric brain tumor community.
As Nathan's dad, I am forever grateful to the Pediatric Brain Tumor Foundation community. And as one of the foundation’s internal research advisors and a scientist who works in drug development, I also see there’s so much more work we can do.
“I finally found my community, and it was life-changing,” says Gretchen about finding the Pediatric Brain Tumor Foundation and participating in a Ride for Kids event in 2017 when she was 16. “It took me almost 12 years to find people that I could actually have a conversation with [about my diagnosis and treatment], and my mom and dad felt that way too. It was an immediate bond with these families that we were meeting for the first time.”
"Children should not have to go through this disease and its treatments. You only get one childhood, and it hurts my heart to know that my son’s got taken away."
Diagnosed with glioblastoma, a highly aggressive form of brain cancer, Chris has faced a prognosis that would shatter most spirits. At just 17 years old, he was given less than two months to live.
Alyssa was a bright and energetic child, excited to start sixth grade. She had just switched schools, and the upcoming year held the promise of new friendships and opportunities. But soon, Alyssa's journey took an unexpected and heart-wrenching turn.
On March 7, 2023, 2-year-old Trey was rushed to the ER with excessive vomiting and extreme fatigue. “That’s what drove us to the emergency room that night,” explains Trey’s mother, Ebony. “But we had no idea the magnitude of the diagnosis [we would receive].”
On January 25 of this year, two-year-old Ian’s mom, Yaimary, noticed her son walking with his head consistently tilted at an odd angle. Concerned, she scheduled an appointment with his pediatrician that same day. After a thorough examination, the pediatrician sent Ian and his mom directly to the emergency room where a CT scan revealed a mass at the back of the child’s head.
It’s been a year and a half since Graham, who is four, was diagnosed with a pilocytic astrocytoma, a low-grade, slow-growing brain tumor. “On Christmas morning Graham was super lethargic. He didn’t want to wake up, which we assumed was due to the long day of travel the day before. But then he had no interest in opening presents. All he wanted to do was nap,” his mother, Abbie, recalls.
After Marin was diagnosed with a brain tumor, her family was inspired to bring their local community together for their annual Tumor Trot that supports children like Marin around the country facing this devastating disease.
