Ten-year-old Matthew spends his time playing with his older siblings, telling jokes, and dreaming of becoming a train driver. As he reaches for his dreams throughout his life, he will face some challenges due to his pediatric brain tumor diagnosis.
At just 28 months old, Matthew was diagnosed with a high-grade brainstem glioma– an aggressive brain tumor he still battles to this day. His dreams may look different than his brothers and sisters, but his family embraces Matthew’s needs and tackles the challenges together, no matter what.
“It’s a hard balancing act because we never want to limit our own kid with what they want and what their dreams are, but we also want to balance it with the reality of the situation. And that’s a tough balance. This entire journey is a constant balancing act of trying to balance his siblings’ wants and dreams with Matthew’s and our own,” says Matthew’s father, Jayson.
The biggest impact his tumor has on his life is difficulties with balance. Being late to start walking due to balance issues as a toddler was one of the warning signs his parents noticed that eventually led to him getting an MRI. He still struggles today with balance due to his tumor location and size, along with other symptoms that vary depending on the current size of the tumor.
Years after Matthew’s initial diagnosis, his dad still remembers the relief of discovering PBTF’s Butterfly Fund– a program that provides emergency financial assistance to families of children in treatment for out-of-pocket expenses like transportation, groceries, professional counseling, and more.
“When we were put into a tough position where I couldn’t provide, I remember PBTF from the start of our journey helped us with gas and food through gift cards. As a provider it was critical for me to know that we would be able to get to the hospital and have food to eat,” says Jayson.
Children with brain cancer can’t wait another week, another day, another minute for your support. When you donate to the Pediatric Brain Tumor Foundation, you help fund life-changing research and provide families with the resources and support they need. Don’t let pediatric brain cancer steal another future.
Matthew’s mother Dawn also shares that the community of support they found through the Pediatric Brain Tumor Foundation made their family feel less isolated, as they are in a position that can be hard to relate to if you haven’t gone through a pediatric brain tumor journey. While they have enjoyed the experience of meeting families through attending PBTF’s Starry Night and other events over the years, they are looking forward to new opportunities to meet and converse with other families who are on a long-term survivorship journey and understand their unique position.
“At the beginning of your cancer journey, you have everyone. You have so much support which is magical and horrible. But if you’re lucky enough to be eight years into your journey, you have nothing. We are desperate to meet other families who have been in our situation for the long term,” says Dawn.
Living with a brain tumor is a chronic, lifelong journey, and families like Matthew’s need the Pediatric Brain Tumor Foundation and your compassion every step of the way. Join us as we seek to raise $365,000 before the end of 2022 to continue to provide welcoming, care-centered support for families as their child goes through treatment and they transition into survivorship. Donate today at www.curethekids.org/holiday2022.
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.
A new bill introduced in the New York State Legislature by Senator Shelley B. Mayer and Assembly Member Christopher Burdick will help remove some of the barriers standing between children with cancer and the learning accommodations they need to succeed in school. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers to provide coverage for neuropsychological assessments for children diagnosed with cancer that affects brain development or function.
The Pediatric Brain Tumor Foundation (PBTF) is proud to welcome Dr. Sanjay Gupta, CNN’s chief medical correspondent, to the PBTF’s Board of Directors. Dr. Gupta will bring his wide-ranging experiences in medical practice and journalism, including as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, associate professor of neurosurgery at the Emory University School of Medicine, and chief medical correspondent for CNN, to bear as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.
