Jack: #55’s Drive Inspires Lifechanging Breakthroughs for Children with Brain Tumors

Jack’s parents, coaches, and teachers all describe him the same way: a helper, always there for others, never unkind or insensitive. He captivates people with his smile and draws them in with conversation.

On May 20, 2019, his family’s life changed in the blink of an eye when he was diagnosed with a brain tumor at age 11. Over the next month, Jack would undergo multiple tissue biopsies and MRIs to confirm the type of brain tumor was a pediatric low-grade glioma.

This tight-knit family of five includes Jack, his parents Tony and Sue, and older twin sisters Madison and Allison. They are athletic and adventurous – skiing, boating, and snowmobiling together – and they love to travel and try new things, with a focus on community and bringing people together.

Looking back, his dad will tell you that Jack’s brain tumor journey started in December 2018. Jack was on cloud nine, joining a hockey team in the fall and carrying on his family’s ice-skating tradition. Those who knew his late grandfather would tell Jack that he skated just like him. That December Tony noticed that Jack was “wobbly” while skating and performing leg-strengthening exercises. Shortly after, Jack seemed to get his feet confused during boxing lessons, and he had difficulty picking up the puck at hockey practice. These athletic challenges were not happening consistently, so like most parents, Tony and Sue attributed them to a growth spurt. Then in April 2019, the family went on a vacation to Costa Rica, where Jack’s hand went numb. They knew something was wrong.

Jack suffered through an initial chemotherapy regimen that lasted 62 weeks, with weekly treatments every Friday for four weeks, followed by a two-week break before starting up again. Every Saturday following treatment, he was home sick from chemotherapy’s side effects, while his friends were out doing typical kid things. He had a cyst that caused extreme pressure on surrounding brain tissue that doctors had to drain a few times each month, first through multiple surgeries and then through an implanted reservoir. He also endured physical therapy two to three times per week and occupational therapy to address weaknesses on his left side and proactively regain as much strength as possible before the next surgery.

Although his treatment journey was painful and difficult, Jack pushed through with fierce determination. August 10, 2020 marked a turning point for him. In his 55th week of treatment – the same number as his hockey jersey – Jack’s family finally received the news that they had been hoping for. His MRI showed retraction of the tumor for the first time. This allowed him to stop chemotherapy treatment by October 2020. By November 2020, Jack’s cyst was also smaller and no longer needed draining. MRI scans over the next year showed tumor shrinkage and stability with no new growth.

Today, Jack is doing well in school, enjoying physics and geometry. He recently finished a great season of snowmobiling — riding for the first time in Canada — and just started his lacrosse season.

Jack’s family shares the lingering trepidation that many families face with each upcoming MRI scan. But also, like others, Tony says they’re grateful for the community they found and hope to help others who are facing a similar journey.

Inspired by Jack’s determination, his family created Jack’s Drive 55 to inspire others and raise money for research through the Pediatric Brain Tumor Foundation. Their community’s generosity is paying off — laying the groundwork for precision medicine breakthroughs that will change children’s lives.

“Jack is often my inspiration,” says Sue. “He never once complained about his diagnosis or while going through treatment. He really has the quality of living in the moment and appreciating those around him, and that reminds me to slow down and be present.”

While Jack’s family knows a cure won’t be immediate, they also know doing nothing isn’t an option. Don’t wait to give families the hope they need and the future they deserve. Join Jack’s family in donating today.