Read Time: 5 minutes
Takeaways:
- Experts used advanced genetic sequencing to diagnosis Porter’s rare cancer.
- Porter received proton therapy at Huntsman Cancer Institute, the only center in the region to offer this cutting-edge treatment.
Impact: Advances in cancer research are giving families like the Kellums the precise answers they need when facing cancer. Huntsman Cancer Institute is leading the way in turning new discoveries into better outcomes.
Porter was living the life of a typical seventh grader.
At 13 years old, he split his time between going to school, playing golf, and flying remote-control airplanes with his siblings.
But in early 2024, Porter felt something was off.
“I felt something blocking my nose,” he says. “I couldn't really breathe, and it was kind of scary.”
When he went to tell his mom, Amanda Kellum, she initially told him to just blow his nose.
But when Porter still struggled to breathe, she began to grow concerned. “Then I looked in,” she says, “and I could see it: a growth inside his nose.”
A More Precise Diagnosis
The following weeks were confusing and difficult for the Kellum family. Early scans from an ear, nose, and throat specialist suggested the mass in Porter’s nose was noncancerous.
But shortly after, Porter was playing with his brother and accidentally got hit in the nose, causing it to bleed—far more than normal. Porter’s parents, Amanda and Larry, took him to the University of Utah Hospital, where he underwent surgery right away, and his tumor was sent to Huntsman Cancer Institute for biopsy.
“When I came out of surgery, they didn’t know what it was,” Porter says. “So, we kind of just waited, crossing our fingers for a while.”
As an ER nurse, Amanda had walked countless families through similar moments of uncertainty. Experiencing it with her own child was far more difficult. “I kind of started spiraling,” she admits.
Huntsman Cancer Institute doctors first suspected the tumor might be Ewing sarcoma based on the initial test results. But some parts of Porter’s case didn’t quite fit that diagnosis, so his care team looked deeper. They performed advanced genetic sequencing, a test built on decades of genetic discoveries that compares a tumor’s DNA to known cancers.
"Huntsman Cancer Institute gives you hope with the research that they do. They give you hope when you’re really hopeless."
The sequencing showed the tumor did not match Ewing sarcoma. Instead, it revealed a different and very rare diagnosis: esthesioneuroblastoma, a nasal cavity cancer typically seen in adults over 65. For Amanda, the clarity that sequencing provided brought much-needed comfort and relief.
“If that particular genetic research and technology would not have been available, Porter would have inadvertently been diagnosed with a cancer that had a treatment plan that would not have been as effective in treating his actual type of cancer,” she says. “Porter’s team of doctors stood on the shoulders of research giants who came before them.”
Innovative Treatment Close to Home
Once the diagnosis was clear, Porter’s care team at Huntsman Cancer Institute walked him and his parents through the treatment options. The specialists explained the pros and cons of each path and how each approach might affect Porter both now and in the future.
The decision belonged to Porter and his family, but they felt supported every step of the way by his team of experts. “They pointed us to which path, in their professional opinion, would yield the best outcome,” Larry says. Because Porter’s tumor was close to the base of his skull and near critical structures, his team recommended proton therapy, which delivers radiation to the tumor with remarkable precision, reducing damage to the healthy tissue around it. “We felt incredibly confident that their way forward was the most ideal for him. Porter had a world‑class team of specialists who would walk in lockstep with us the whole way.”
After multiple surgeries, Porter began six weeks of proton therapy at the Senator Orrin G. Hatch Proton Therapy Center at Huntsman Cancer Institute, the first and only proton therapy center in the Mountain West.
Before its opening, the nearest proton therapy centers were more than 700 miles away—in southern Arizona, southern California, or western Washington. For many families like the Kellums, that distance would mean weeks or even months of travel, lodging, and separation from normal life.
“We're lucky that we have a proton machine so close,” says Amanda, who lives in Lehi, Utah, about 35 miles from Huntsman Cancer Institute’s main campus in Salt Lake City. “We feel incredibly blessed to have access to such a world-class facility and are so grateful that Huntsman Cancer Institute had the resources that it did.”
The Bright Spot
Daily radiation treatment took a toll on Porter as well as his family. The treatments were draining and often left him tired.
“It was kind of hard with missing school,” Porter says. “I’d miss out on golf and things like that. And it also made it hard for my parents. They’d take time off work to take me.”
Despite the challenges of daily treatment, Porter and his family felt surrounded by people at Huntsman Cancer Institute who knew how to bring comfort into even the hardest moments.
“I feel like going there, everyone knew what I was going through and how they could help me,” Porter says. “And they made me feel good, too.”
One of those people was Abbie Owens, MS, a certified child life specialist at Huntsman Cancer Institute. “She was super nice,” Porter says. “She’d check in with me every day to make sure I was doing all right, and if I had any questions, she would answer them.”
Abbie supported the whole family, not just Porter. “She checked on me every day and asked what we needed and how they could support us,” Amanda says. “And that was invaluable.”
“The whole staff, from the receptionist all the way to the doctors were so supportive,” Amanda continues. “Huntsman Cancer Institute was the bright spot.”
Porter completed treatment in December 2024. “Proton therapy was a slam-dunk for his treatment plan,” Larry says.
Now, Porter is doing well with treatment behind him and is back to enjoying all the activities he loved before.
Hope Through Research
Porter’s parents point to cancer research as the reason Porter received the best possible care for his rare diagnosis. From genetic analysis of the tumor to cutting-edge proton therapy, every step in his journey was possible because of advances in research.
Looking back, Amanda says Porter’s experience showed her just how directly cancer research translates into better care and better outcomes.
“There are not many degrees of separation between you and a loved one you know being diagnosed with cancer. In our case, it was our son,” Amanda says. “But Huntsman Cancer Institute gives you hope with the research that they do. They give you hope when you’re really hopeless.”
