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].”
What Ebony and her husband Gregory learned that night and in the days following was that Trey wasn’t sick with a virus, he actually had stage 4 atypical teratoid rhabdoid tumor (ATRT) brain cancer, an extremely rare and fast-growing cancerous tumor of the brain and spinal cord that afflicts fewer than 10% of children with brain tumors and typically occurs in children age 3 and younger.
“ATRT is not something a lot of people know about, but it exists. It really does,” says Ebony. In fact, Ebony was told there are currently only 58 children in the United States with ATRT. This statistic alone makes diagnosis and treatment challenging. But on top of that Trey has experienced a series of rare outcomes and side effects while undergoing his treatment protocol.
“If it’s something rare, you name it, he’s had it happen,” says his mom. “It’s almost like he said, ‘Sign me up for anything rare.’ As a result, I live by really trying to take one day at a time and I lean on my faith to get me through those moments.”
In addition to the overwhelming burden of dealing day-to-day with Trey’s treatment and recovery, Ebony points to other huge challenges for families like hers facing a pediatric brain tumor diagnosis.
“No family can survive the financial burden [alone],” she shares “A diagnosis like this drastically changes a family’s ability to provide. It doesn’t matter what you made prior to your child’s diagnosis; you don’t make that after your child receives the diagnosis.”
One example of how Trey’s diagnosis has affected his family’s daily life was the need for Trey to receive a stem cell transplant after chemotherapy that would transfuse healthy bone marrow cells back into his body. As a result, Trey had to remain isolated in his hospital room for two months while his immune system recovered. During that time, Ebony spent almost every day with him.
Finding a successful stem cell donor match has also been a challenge. Ebony explains, “I’ve learned how extremely difficult it is to find a donor if you are African American. We only have about a 29% chance of finding a match because African Americans don’t donate as often as others. So I knew I had to do something.”
So along with everything else she was managing, Ebony and her husband organized a donor drive in honor of Trey. “My hope is to encourage more African Americans to donate – not just here in Kentucky but nationwide,” she says. “It’s something positive I’m able to do that can hopefully make a difference – even if it’s not for my son directly but for someone else’s child who will follow a similar path.”
Trey was declared cancer-free in November 2023 and had recently begun enjoying life as a kid again. However, at his nine-month post-treatment appointment this August, his family received the heartbreaking news that his tumor had returned. Despite this setback, Ebony shared, “It is important for people to know that Trey is still fighting and continues to smile through the storm.”
Trey’s journey and its many challenges has only strengthened Trey’s parents’ resolve to raise awareness about childhood brain cancer, particularly ATRT, an extremely aggressive form that doesn’t receive the same attention as many common adult cancers. They are also dedicated to advocating for increasing the number of donors in the African American community.
The experience and dedication of families like Trey’s underscores the importance of the Pediatric Brain Tumor Foundation’s mission. PBTF is committed to serving families through the funding of cutting-edge research, advocacy, and a wide variety of family support programs. Visit https://curethekids.org/resource/support-for-families/ to find resources and community support for every stage of the cancer journey – from diagnosis through treatment and beyond.
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 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.
“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.
