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.
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.
“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
The Pediatric Brain Tumor Foundation today announced the appointment of Ursula Burns and Jordan Wertlieb as inaugural members of the organization’s new Advisory Board. Burns and Wertlieb offer their exceptional business acumen and experience to PBTF, the largest patient advocacy funder of pediatric brain tumor research.
