A Dad’s Advice Regarding Help: Say Yes to Everything!

For eight-year-old Sam’s family, January 10, 2024, is a date that will never be forgotten. It’s the date their world changed when Sam, an active third grader, was diagnosed with a low-grade glioma after months of unexplained headaches and vomiting. The diagnosis confirmed their worst fears, and the very next day, Sam underwent brain surgery.

The months leading up to that moment were marked by growing concern and uncertainty. “We’d been noticing these headaches and episodes of vomiting since the fall,” Sam’s dad, Shawn, recalls. “At first, we thought it was anxiety because the symptoms seemed to align with school events and sports practices. But by late December 2023, it was clear something more was going on.”

A visit to a gastrointestinal specialist on January 3, 2024, set the Kostoffs on the path to answers. The specialist, more concerned about Sam’s pattern of headaches than his vomiting, referred them for a CT scan, which ultimately revealed the tumor. “When the neurology team asked Sam to leave the room [following the CT scan], my wife, Lauren, and I just knew,” Shawn shares.

Recovery and Resilience

Sam’s surgery was a success, but his recovery proved more difficult than anticipated. The resilience doctors often attribute to children was put to the test. Instead of a quick recovery, Sam faced significant challenges. “We were optimistic,” Shawn says. “Doctors told us most kids are up and moving within a few days, but Sam struggled. He was in a lot of pain and bedridden for days,” Shawn recalls. “Watching your child suffer is one of the hardest things a parent can endure.”

Physical therapy proved especially challenging. Simple tasks like sitting up became effort-filled hurdles. However, with the unwavering support of his family and medical team, Sam gradually regained strength. By spring, he was back on the baseball field and attending school part-time.

The Importance of Community

Amid the challenges, the Kostoffs found strength in their support system. From the beginning, Sam’s care team made an indelible impact. “I can’t say enough about how grateful we are, starting with Sam’s pediatrician,” Shawn said. “He was all in to help, even before we knew what was going on, and he’s always been available to answer our questions. Then there was the GI doctor, who only spent about 30 minutes with us but had the wherewithal to refer us for CT scan. Sam’s neurosurgeon operated the very next day, and the caseworker at the hospital was fantastic. She not only coordinated care but also introduced us to the Pediatric Brain Tumor Foundation (PBTF).”

The family leaned on PBTF for a number of its resources, from emotional support to opportunities that brought moments of joy amidst the challenges. “The support PBTF offers families is just as important as the research it funds,” Shawn says.

One such memorable moment came in August 2024, when the Kostoff family joined other pediatric brain tumor families at a Wilmington Blue Rocks minor league baseball game. Hosted as part of PBTF’s Vs. Cancer initiative, the event offered families a chance to enjoy special experiences with the team and be a part of a moving Starry Night ceremony.

That evening, Sam took center stage as his story was shared with the crowd. For Shawn and Lauren, it was an empowering moment, not just for Sam but for their entire family. His younger siblings, Scotty and Lawrence, were also honored as part of the family’s journey. “They went through their own trauma during Sam’s surgery and recovery,” Shawn explains. “That night at the Blue Rocks game, they got to shine alongside their brother. It meant the world to them and to us.”

Looking Ahead

Today, Sam is thriving. After months of intensive therapy, he’s back in school full-time and recently played a full season of baseball. His experience has become a meaningful part of the family’s story—one focused on growth, resilience, and gratitude. “Our family talks about Sam’s journey often,” Shawn shares. “He’s even included it in school projects. It’s part of who he is now, and we celebrate how far he’s come.” To honor his progress, the family has designated January 10 a special day dedicated to celebrating Sam and doing something memorable together.

Reflecting on the support they’ve received, Shawn has a message for families facing a similar path: “Say yes to everything. Whether it’s connecting with organizations like PBTF or accepting help from friends and family, say yes to the help and resources offered. You can’t do it alone, and you don’t have to.”

The Pediatric Brain Tumor Foundation offers resources and a compassionate community to guide families through every step of the brain tumor journey. Visit curethekids.org/support-for-families for a wealth of helpful information or email [email protected]. To learn more about becoming an advocate with PBTF, visit curethekids.org/advocacy. You can also reach out to our Patient Family Advocacy team by completing this brief form or emailing [email protected] anytime.