Outside-the-Box Treatment Helps Teen with Aggressive Brain Cancer

Sam was diagnosed with glioblastoma his freshman year of high school. After nearly five years of unconventional therapies, he’s enjoying life as a college senior.

During his high school commencement speech, Sam Kell told classmates why that milestone was especially meaningful for his family.

Many thought “I’d have no chance of being here tonight,” he said.

Just a few months into his freshman year, while running with the cross country team, Sam experienced double vision that prompted an MRI.

The result: brain cancer.

The next day, the then 14-year-old underwent brain surgery to remove as much of the tumor as possible. But the diagnosis remained grim: Grade IV glioblastoma — an aggressive, fast-growing brain cancer with an average life expectancy of 12–18 months.

That was in November 2015.

Today, the 21-year-old is a college senior and manager for the men’s basketball team at Oakland University in Rochester, Mich., near his family’s home.

“I’m filled with gratitude,” he says.

A Nonconventional Approach

For nearly five years, Sam was on two experimental treatments overseen by University of Michigan Health C.S. Mott Children’s Hospital.

“Sam’s outcome is not typical,” says Carl Koschmann, M.D., Mott pediatric oncologist and researcher with the Chad Carr Pediatric Brain Tumor Center at Michigan Medicine.

“We have no experience with young adults on the treatment Sam was on. We don’t have enough data to know if either or both of these therapies contributed to his success, but he is doing well because he was up for the fight and willing to try, remaining compliant with the new therapies.”

Sam underwent DNA and RNA genomic sequencing at Mott to confirm which mutation was driving his cancer and help match him with an unconventional treatment to target that specific mutation. The sequencing results convinced doctors to treat the teen with a drug called everolimus — typically used to prevent rejection of organ transplants and in the treatment of renal cell cancer, not brain tumors.

In addition to the medication, Sam also opted to use a wearable device called Optune, which uses adhesive patches on the head that create low intensity, wave-like electric fields with the goal to stop or slow glioblastoma tumor cells from dividing.

The therapy, predominately used by adult patients, required Sam to shave his head every morning and hook the device on for nearly 18 hours. He maintained the intense daily routine throughout high school and through his first year of college.

Sam’s prognosis was helped by having a majority of his tumor removed by his initial surgery — leaving fewer cancer cells to grow back, Koschmann says. Still, even with a good resection, only a small minority of patients with glioblastoma survive two years.

His case was so unique that researchers detailed it in a case report published in the British Medical Journal in 2019.

Koschmann says care teams were impressed by Sam’s commitment to staying compliant with the therapies, all while keeping up with classes and playing on the basketball team at Stoney Creek High School in Rochester.

“We wouldn’t typically ask a teen to keep up with a therapy that requires shaving your head every day and using a device for 18 hours while attending high school,” Koschmann says. “But he was up for the logistics and never missed a day. We were astonished at how well he kept up with it.”

Sam’s mom, Gina Kell Spehn, says when the family researched glioblastoma and learned about expected outcomes, they knew they wanted to try something different. They were also wary of how chemotherapy might impact his quality of life.

“The results for what had been the standard of care for decades weren’t promising,” she says. “We wanted to explore all of the possibilities.”

“Sequencing Sam’s tumor helped doctors examine it from a different perspective and explore an out-of-the-box approach. For us so far, saying yes to something completely unconventional was the right choice.”

Focused On The Future

For high-risk brain tumors, which have surgical limitations because of their location, and that are resistant to the best-known therapies, there is no established standard of care proven to help the prognosis. For these pediatric cancer patients, doctors need to consider treatment that may not have ever been tried before, Koschmann says.

And stories like Sam’s are strong motivators for pushing the envelope with precision medicine. Mott was among the first hospitals in the country to use real-time sequencing in the care of high-risk pediatric tumors — and all high-risk pediatric brain tumors are now routinely sequenced through the Mi-ONCOSEQ program at Michigan Medicine.

“We’re in a relatively newer era where, instead of treating all patients with cancer the same way, we are looking at the actual fingerprint of their tumor, sequencing it to find all the genes that mutated in that tumor and providing a treatment tailored to that specific patient,” he says.

“When we have patients like Sam it’s a huge boost for our medical team to continue outside-the-box ideas in these high-risk situations. We need to keep working to advance research and make precision medicine better for patients like him.”

But because Sam’s treatment was so unconventional, there’s no precedent and little data to guide next steps.

In 2020, Sam made the tough decision to stop therapies and go into tumor monitoring.

For now, he says he’s enjoying his senior year at Oakland. He’s not sure what the future holds but, as a longtime sports fan and athlete, he has an interest in coaching.

“Cancer is part of my story, but I learned that cancer is not who I am,” he told his graduating class last spring. “Even our worst enemies deserve our gratitude because they teach us so much.”