He could have gone to Disneyland or met his favorite celebrity, but when the Make-A-Wish Foundation came to Burke Tinsley he had another idea.
The 17-year-old cancer survivor from Kentucky wished to visit Seattle, first to see Microsoft Studios and second to see Fred Hutchinson Cancer Research Center and learn about a new drug that might have prevented his debilitating brain injury.
Last week, Burke fulfilled his wish. The avid video game player spent Thursday at Microsoft Studios learning how games are made and also gaming with professionals. On Friday, Burke and his family toured Dr. Jim Olson’s lab at Fred Hutch where members of his team shared their research.
“It’s inspiring, it’s why we do what we do,” said Olson Lab research technician Madison Wise reflecting on her time with Burke.
When he was 14, Burke was diagnosed with ependymoma, a rare tumor that forms in the brain and spinal cord. His first surgery went smoothly, but he needed a second surgery which left him in a coma-like state.
“He couldn’t move, talk, or eat, for 10 weeks and they weren’t sure if he ever would,” said Arlette Tinsley, Burke’s mother.
The surgery removed the fist-sized tumor but it damaged Burke’s cerebellum, limiting his ability to move and speak. Some doctors recommended that Burke go to the equivalent of a nursing home for children because he might not recover. One young physician advised a different route involving intensive therapy.
“At first, it took him two hours to write his name,” Arlette said of her son’s slow recovery. “He eventually did it in 15 minutes. When he started going back to school, he went two mornings per week, and then three, and then full days. Now, he’s back in school full time.”
During his recovery, Burke and his mom saw a video about Tumor Paint, a drug developed by Olson and his team which is currently being tested on children with brain cancer in a Phase 1 clinical trial. The drug, recently given orphan status which will expedite its FDA approval, can help avoid tragic complications like Burke’s because it makes tumors clearly distinguishable from healthy tissue during surgery.
Burke acknowledges that if the drug were available earlier, he might be in a much different place. But he’s not bitter. He learned that drugs like these are often overlooked and underfunded by pharmaceutical companies and wanted to support Project Violet, an initiative to fund this research.
“I think it’s just amazing,” he said. “I want Project Violet and all the stuff they’re working on to go forward. I want it to get bigger, and do more. If Project Violet had been around for me, maybe I would be able to walk.”
Learning to walk again
Burke was determined not only to visit Olson’s lab – but to walk in the door. It took him three years of rehabilitation to get there.
“He went from a wheelchair that held his head up, to a regular wheelchair, to a walker, to a walker with wheels,” his mom said. “Now he’s using a cane. He made it through all the airports: Louisville, Chicago, SeaTac, he did the whole thing. He keeps telling his doctors that his goal is to run again, because he was a cross country runner.”
Some people would call Burke an optimist, but he sees himself more as a “glass half empty, probably contains poison” type of person, even before his illness. He believes in expecting the worst but fighting for the best, and being the driver of his own destiny. He also advises anyone who has been diagnosed with cancer to read Invictus by William Ernest Henley, who wrote the poem when he was also fighting to walk again after debilitating tuberculosis.
“There’s one part of that poem that really speaks to me. It’s the part where he says ‘I am the captain of my fate; I am the master of my soul,’” Burke said, his voice full of passion. “If somebody has been diagnosed with cancer you’re still the captain of your fate, the master of your soul. Maybe it’s the only thing that matters. How hard you work, what you do, how you try, everything you do, you can determine your own destiny. It’s your own will and determination, your own drive that makes a difference.”
Arlette says Burke’s perspective is the reason he has progressed so much in his therapy.
“He is stubborn but I think his therapists put up with it because he works incredibly hard,” Arlette said. “One therapist said, ‘I wish I could take some of you and sprinkle it on my other patients.’”
Burke and his family flew home Sunday night, where he will continue rehabilitation before starting his senior year of high school. He wants to attend college in his home state where he hopes to pursue his love for both science and art and potentially become a teacher or therapist after he graduates.
“I think that life is terrible, that’s a given, but you can be happy, you can live your life to the fullest,” Burke said. “You have so much ahead of you, everyone, and there’s so much that you can still do. Just don’t despair. Life sucks, but be happy.”
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Megan Herndon is a writing intern on the Fred Hutch news team. She is a rising senior at the University of Washington where she is majoring in journalism, minoring in French and pursuing a Certificate of Sales. Reach her at mherndon@fredhutch.org.
