Brain Tumor: Devon’s Story

Published on

During her spring 2020 semester as a high school senior, Devon was looking forward to graduating and then attending Clemson University in South Carolina when she began experiencing blurry vision and headaches over the course of a few weeks. She became certain she knew what was wrong. “I told my little brother I had a brain tumor,” she says matter-of-factly. It didn’t take long to discover she was right.

Devon's headshot In April, the blurry vision advanced to an episode of double vision while she was driving. “We went to the eye doctor, who said, ‘There definitely is something going on,’” says her mother, Susan. Devon was referred to a neuro-ophthalmologist, but three days later, on a Sunday, she felt terrible, so Susan took her to the Children's Hospital of Philadelphia (CHOP) Urgent Care Center in King of Prussia, Pa.

“They told us to get a brain scan immediately,” says Susan, “so we drove to the Philadelphia ER. I had a water bottle and a phone charger in my purse. She had nothing. We ended up in the hospital for 10 days.”

That evening, Devon was diagnosed with a brain tumor. Imaging showed it was the size of a softball. Two days later, pediatric neurosurgeon Benjamin Kennedy, MD, removed the tumor during a 12-hour surgery. An MRI showed that the whole tumor had been removed.

While the hope was that the surgery would be the only treatment Devon would need, a molecular test of the tumor showed two mutations that indicated her brain tumor would likely come back unless a more intensive treatment plan was implemented. Her medical neuro-oncology care team of Jane Minturn, MD, PhD, and Christina M. Hanna, MD, MPH, altered Devon’s treatment course based on this finding, demonstrating the incredible power of personalized medicine. Over the next three months, until August 2020, Devon underwent 30 rounds of proton therapy at the pediatric program at Penn Medicine’s Roberts Proton Therapy Center, followed by a year of chemotherapy.

Returning to running and schoolwork

Amazingly, after she healed from the surgery, Devon immediately dove back into the activities she loves, even while undergoing proton therapy. An avid cross-country runner, she slowly started running again as much as she could. Three weeks after surgery, she took three AP exams.

Devon with her mom and caregiver at CHOP In the fall, Devon started college as a bioengineering major with a minor in materials science while still on chemotherapy. To keep an eye on Devon’s health, Susan moved into an apartment 10 minutes from Clemson’s campus while her husband, Joe, stayed home with their 16-year-old son, Matt. Susan spent the year “being a mom to a lot of kids, shopping for them, making sure Devon kept her weight up, and going to the gym a lot.” Devon made the Dean’s List in the fall and joined the rowing team in the spring.

Dr. Minturn knew a pediatric neuro-oncology colleague at Children’s Healthcare of Atlanta who followed Devon while she was at school. When Devon and Susan came back to the Philadelphia area at the end of the spring semester, Devon got a job with the beach patrol at Sea Isle City, NJ.

Devon finished chemotherapy in August 2021 and headed back to Clemson for her sophomore year — this time, without her mom along — and again excelled in her studies. She’s now looking forward to another summer on the beach patrol.

Devon’s grandparents, Paul and Carol Touhey, were very involved in her time and treatments at CHOP. Since Devon’s treatment, Paul joined CHOP's Brain Tumor Research Board of Visitors. Paul and Carol generously support the Children’s Brain Tumor Network, to help find better outcomes for all children diagnosed with a brain tumor.

Devon has shown remarkable resilience and poise in the face of her diagnosis and treatment, and she knows she’s lucky that she was able to have lived such a normal life throughout the course of her treatment.

Next Steps
Existing Patients or Family Members
New Patients, Referrals and 2nd Opinions
Young boy smiling outside

Get a Second Opinion

Our experts are here to review your child’s diagnosis and treatment plan, and work with primary oncologists as needed.

You Might Also Like
Liam - Brain Tumor Patient

Brain Tumor: Liam's Story

Concerns about a possible concussion soon gave way to more shocking news: Liam had a brain tumor.

Conor as a young toddler

‘Worth Every Mile’

Conor and his parents travel to CHOP from South Carolina several times a year to be seen by neurofibromatosis experts.

Gabby smiling

Gabby’s Story

"CHOP is so great because they support the whole family," says Gabby's dad, Paul.