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.
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.
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn’t happen. It’s too “taboo” or “uncomfortable.” So, this year, on the 7th anniversary of my surgery, I want to talk about it.
In June 2018, Valentina was diagnosed with a pediatric low-grade glioma with a BRAF mutation. At the time, she was only one year old. Surgery was not an option, so her family had two choices for treatment—traditional chemotherapy or an experimental treatment suitable for her type of mutation.
Combining her love for reading and desire to give back to help kids with brain tumors like her, Zoe created Books 4 Brains to raise money for pediatric brain cancer research. Join her upcoming Books 4 Brains read-a-thon and support the Pediatric Brain Tumor Foundation's research funding efforts.
After Bennett was diagnosed with a brain tumor, his parents decided to do something not only for their son, but for the thousands of kids in their community and around the world who are living with brain cancer.
Jack’s parents, coaches, and teachers all describe him the same way: a helper, always there for others, never unkind or insensitive. He captivates people with his smile and draws them in with conversation. May 20, 2019 was the day life changed in the blink of an eye for his family when he was diagnosed with a brain tumor at age 11.
One mother shares her perspective about pediatric brain cancer's impact on the entire family.
