“You don’t expect to hear that you have cancer at 16,” said Ethan Wheeler, a talented Port Falls, Idaho, teen who was diagnosed with germinoma last year. “I immediately went into a ‘mortality panic,’ afraid that I could maybe die.”
Wheeler, who plays piano, is active in theatre and creates video games for fun, first began developing odd symptoms at age 15. Experiencing delayed puberty and growth as well as diabetes insipidus, a rare condition unrelated to blood sugar levels where the body couldn’t regulate fluids.
“It was very frustrating when Ethan first developed all these disparate symptoms and we couldn’t figure out what was going on,” said his mother, Jessica Wheeler. “About a year into these symptoms, he was tested for growth hormones, and an MRI discovered the tumor by his pituitary gland.”
Wheeler first required a biopsy, an incredibly tricky procedure when it comes to brain tumors.
To avoid a craniotomy (which accesses the brain by removing part of the skull), his local providers sent him to Seattle Children’s Hospital for a transsphenoidal biopsy, where doctors access tumor tissue via the nose. The procedure, much less invasive than a traditional brain biopsy, revealed that Wheeler had germinoma, which explained his symptoms.
“Germinoma is a type of germ cell tumor that often arises near the pituitary gland and hypothalamus, regions of the brain that regulate hormones among other functions,” said Fred Hutch’s Lisa Ni, MD, who treated Wheeler.
Fred Hutch provides cancer treatments for some childhood cancer patients and offers proton therapy as a treatment option.
“When a tumor grows in this area, it can disrupt normal hormone signaling, which explains Ethan’s combination of delayed puberty, growth issues and diabetes insipidus,” she said, adding that germinomas respond very well to chemotherapy and radiation.
“With appropriate treatment, cure rates are greater than 90%, with a low risk of recurrence,” she said.
Once he had the diagnosis, there was a “whirlwind” of activity, according to Jessica Wheeler. He was scheduled for surgery the day before Christmas Eve and was also enrolled in a clinical trial.
“He has surprised us in many ways,” she said. “One thing that was pretty cool to hear from him was his willingness to participate in the study. He said, ‘If my participation can help anyone else have better results, then I'll do it!’”
The trial focused on reducing the dose of radiation to the tumor after a course of chemotherapy. Ni recommended using proton therapy.
“Proton therapy allows us to target a treatment area with a high degree of precision while sparing the healthy brain tissue and nearby structures,” Ni said. “Unlike conventional photon radiation, proton beams deposit most of their energy directly within the treatment field and then stop, rather than continuing through the brain and exiting the other side. This precision is especially valuable in children and growing teenagers, since it helps protect long-term cognitive and hormonal function.”
Wheeler started four rounds of chemotherapy in January 2025, which he was able to do near home. In late April, he started proton therapy in Seattle.
“Proton therapy was good for the most part,” he said, “but I experienced these really unpleasant smells — like burnt garbage or rusty rotten eggs — that I started to dread after a while.”
Some patients who receive radiation to the brain will report unusual sensory symptoms during treatment, such as unfamiliar smells or brief flashes of light. These only occur while the radiation beam is active and resolve immediately after each session.
“He really had no side effects other than the anxiety about the smells,” Wheeler’s mother said. “He had some temporary eye twitching and drifting that self-corrected and all his senses are still excellent. We were worried about certain long-term side effects, but everything is fine. It’s a miracle.”
Wheeler did so well, in fact, they drove home from Seattle to Post Falls every weekend so he could attend rehearsals for Mary Poppins, along with his three siblings.
Wheeler leaned on friends, family and his musical talent to get through treatment. He made friends with other patients doing puzzles in the proton therapy lobby. He brought his keyboard and practiced for an upcoming piano recital He and his family explored Seattle and even attended a baseball game as a way to counteract the stress of their many medical appointments.
The family also received a lot of support from friends and family back home who sent care packages and gift cards for groceries and local activities.
“Ethan’s energy went down a bit near the end, and it took a couple months to get back up and running,” his mother said. “But by the time his Make-a-Wish trip to the brand-new Epic Universe and the other theme parks in Orlando came around in August, he was pretty much back to normal. He’s even mostly over the ‘smell trauma.’”
Wheeler encouraged patients with cancer to keep busy and stay upbeat during treatment.
“Find something to look forward to that keeps you optimistic and focused on the end prize," he said. "During chemotherapy I was thinking about the new Nintendo Switch coming out, later I thought about the Make-a-Wish trip and summer movies…You can keep yourself going longer with positivity and with focusing on the future.”
His mother, Jessica Wheeler, focused on the quality of her son’s care.
“As a mom, what kept me going was that his prognosis was good and I knew he was getting top quality care,” she said. “I felt so lucky. It helps get you through when you know that the top folks are treating your child with the best available treatments.”
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