Especially when you’re 9. And maybe more so when it’s an uncommon treatment, one designed to limit damaging side effects..
So how did that 9-year-old from Gray feel after completing the program?
Better than he has in years.
On Nov. 26, Holden Doebler-Cortes graduated from his six-week treatment program at the Provision Center for Proton Therapy to become the state’s first pediatric patient to receive proton radiation treatment.
The Provision Center, in Knoxville, is one of 14 clinics in the U.S. to treat its patients with proton radiation therapy. Though a doctor said the therapy is not more or less effective in treating cancer, Holden said it has given him a reason to feel better about his health moving forward.
“It made me feel like I was going to have a new life,” Holden said. “I feel really good.”
Although Holden said he’s feeling better these days, in the spring of 2012, he and his family were unsure as to how the future would treat him. In March 2012, Holden was taken to Niswonger Children’s Hospital when he began losing his coordination and feeling unusual pains throughout his upper body.
“Whenever I breathed in, it hurt my lungs,” Holden said. “Sometimes my neck hurt. It was kind of painful for me.”
Doctors diagnosed Holden with hydrocephalus — a buildup of cerebrospinal fluid around the skull — and took him in for emergency surgery. Holden was inserted with what is known as a ventriculoperitoneal shunt to drain the excess fluid from his head and, for a time after the procedure, he returned to normal, according to his mother, Shanna Jones.
“He was improving and getting better,” she said. “He was starting to walk normally again (and) he was a lot less clumsy then he had been. Then he reverted back to ... those original symptoms.”
On April 23, 2012, after Holden underwent an MRI, doctors found a tumor near the top of his brain stem. Known as tectal glioma, the tumor presented doctors with an uncommon set of challenges, according to Jones.
“The placement of the tumor was troublesome,” Jones said. “It was nothing we could touch, surgically, and nothing we could even biopsy. But they’re very slow-growing, typically ... so we just followed him for several years.”
Every three months, Holden returned to the hospital to undergo MRIs to track the tumor’s growth. In August, however, Jones said she was told Holden would need radiation treatment to stop the cancer.
“When they recommended radiation therapy, that was super scary,” she said. “It has some crazy, longterm, super intense side effects; we’re talking things like IQ decline and general cognitive function decline. Those are forever kind of things.”
After learning the doctors’ recommendation, Jones and her partner, Luke Holt, began researching radiation treatment options to see what alternatives, if any, existed.
“We weren’t looking for any magical cure,” she said. “We just wanted to make sure we were doing the very best thing we could and know every option possible. That was when we kind of stumbled across the proton therapy.”
According to Dr. Matt Ladra, a radiation oncologist at Provision, proton therapy treatment is capable of limiting potential side effects, unlike photon radiation treatment. Ladra said photon treatment — which is the treatment most commonly used to treat cancers — can lead to the sort of debilitating side effects Jones mentioned, as well as others, because the radiation works its way through surrounding tissues.
“Photons ... don’t stop as abruptly in tissue, while protons stop at very discreet points,” Ladra said. “When that is summed up, the total dose (of radiation) received by the patient ends up being about two to three times less. (Proton therapy) will reduce the amount of excess radiation for any patient.”
Though proton therapy may limit the amount of radiation a body receives, Ladra added it is no more or less successful than other, more traditional radiation treatments.
“You can say the success rates are the equivalent to what would be done with standard radiation,” Ladra said. “The benefit is really a reduction in side effects and an improved quality of life.”
Despite learning as much in her research, Jones said she remained skeptical about the treatment’s chances of limiting that radiation dosage.
“It was almost that too-good-to-be-true thing,” Jones said. “But as we continued to do our research and continued to read and talk to doctors and other patients who had undergone proton therapy, there was more of a sense of relief and gratitude that there’s technology like this available. We went up there, met with them, and it was just kind of fated, it seemed.”
From Oct. 20 — two days after Holden’s ninth birthday — to Nov. 26, Holden received 28 treatments in which his tumor was treated with proton radiation. Despite being treated with a rare and expensive form of radiation, Holden said his treatment process was as easy as taking a nap.
“I basically just sat still,” Holden said. “They just put on a mask and I’d have to lie down there for 15 minutes — well, at least, it felt like 15 minutes. It went pretty well.”
While easygoing, those treatments, according to Ladra, were also successful in limiting the radiation dosage to his surrounding tissue, which, in this case, would be his brain.
“In Holden’s case, proton therapy delivered less radiation to his temporal lobe, which is a part of the brain that’s important for memory and learning,” Ladra said. “It also goes to his hypothalamus, which is part of the pathway that controls his growth hormones, thyroid hormones and his hormone development — his metabolism, basically.”
Though the treatment may have limited radiation exposure to those and other areas, Ladra said it was too early to determine if the treatment was successful in stopping Holden’s tumor. Still, he added he was optimistic that the proton treatment was successful.
“We really won’t know definitively for five or 10 years,” Ladra said. “At this point, he’s had what we think is definitive treatment. The plan is to continue to watch him with scans every three to six months. For every three-month interval that passes and this thing continues to shrink and doesn’t grow, the chance he’s cured is better
“I expect it to continue to shrink slowly and then to disappear eventually.”
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