On November 9, 2009, Perry received the best birthday present he could imagine. His selfless, caring son Colby was born.
Colby loved Pokémon, BattleBots, LEGOs, music, and most importantly his sisters. He was a master of Chinese checkers and was always ready with one-liners, bad puns, and dad jokes.
On April 25, 2021, Colby was diagnosed with diffuse midline glioma with a H3K27M mutation. He received a ventriculoperitoneal shunt and shortly afterwards underwent chemotherapy and radiation treatment. The initial treatment was more effective than predicted and the tumor was stable for about six months. In February 2022 doctors found disease progression and Colby started receiving a different type of treatment at the Children’s Hospital of the King’s Daughters in Norfolk, Virginia. The treatment slowed the growth for a couple months, but eventually it could not stop it.
Shortly before 6am on June 4, 2022, Colby passed away. He was only with his family for 12 short years, but his impact was felt by everyone who met him.
Colby and his family were very close, and in a way, his father shares, the diagnosis made them even closer. It made them appreciate their lives and time together. For Colby’s memorial they had everyone wear a funny graphic tee, something Colby was known for, and had all his favorite things including LEGOs, ice cream, and chicken nuggets. Everyone who attended wrote down their best or worst puns and dad jokes in a book in honor of Colby.
Having the support of the Pediatric Brain Tumor Foundation throughout Colby’s journey helped their family realize that no matter how hard things are, you’re never alone through a brain tumor diagnosis. They found comfort knowing there are others devoting their lives to fighting brain cancer and working towards a cure.
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.
“Once you hear your child’s diagnosis, everything changes,” shares Perry. “It changes your entire life forever. For me, life became filled with ‘what if’ questions about our options and treatments when in reality, at least with our diagnosis, there were little to no options because there is no cure.”
In September Colby’s family participated in the Starry Night 51-mile Challenge in honor of his journey and to raise awareness for others facing this disease. In addition to walking, Perry made a Starry Night-themed skateboard and dedicated it to everyone involved in their journey, those walking in September, and those who have been diagnosed. At the end of the challenge, he worked with our family support team to donate the skateboard to a young adult survivor.
Navigating life after a child’s brain tumor diagnosis can be overwhelming, and it can be difficult to meet other people who have experienced what you and your family are going through. The Starry Night Community on Facebook provides a virtual community for anyone impacted by a pediatric brain tumor diagnosis. Join the community here.
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.
