Proton Therapy

Patient Stories | Atticus and Medulloblastoma

When Atticus first started complaining of headaches, his mom, Maria, thought the third grader just wanted to stay home from school. But gradually, Atticus’ symptoms grew more severe.

In January 2021, Maria got a call from Atticus’ pediatrician that would change their family’s lives forever. “His pediatrician asked, ‘Are you home?’ and I said, ‘No, I’m not.’ He said, ‘I can’t talk to you until I know you’re safely home.’ And I just said, ‘Oh, my God. Oh, my God.’”

The pediatrician explained that test results had shown a very large tumor in Atticus’ brain. The diagnosis was a medulloblastoma, a type of tumor that grows in the part of the brain called the cerebellum, which is located at the base of the skull, above the brainstem. The cerebellum controls balance, coordination and other motor functions. 

Medulloblastomas block cerebrospinal fluid from draining and cause pressure to build in the brain. They are the most common cancerous brain tumor in children, making up about 20% of all pediatric cancers of the brain.

Atticus and his parents soon met with an oncology team in their hometown in Tennessee, where they learned of his pediatric cancer treatment options—including proton therapy.

Pediatric Proton Therapy

Proton therapy is a form of radiation therapy that uses hydrogen atoms to destroy cancer. Because of its precision, proton therapy has fewer side effects and helps spare normal tissue, explains Trent Hummel, MD, co-medical director of The Cure Starts Now Foundation Brain Tumor Center at Cincinnati Children’s.

Proton therapy, also referred to as proton radiotherapy, can be used to treat about 80% to 85% of children whose cancers require radiation therapy. In addition to medulloblastomas, these include other cancers of the brain and central nervous system, as well as lymphomas and certain solid tumors.

Maria and her husband, Josh, had heard about Cincinnati Children’s being a leader in pediatric oncology, and one of only a few programs in the world with a full inpatient, pediatric cancer hospital just down the hall from its Proton Therapy Center.

“Just with that simple knowledge, it was an immediate ‘yes,’” Maria said.

The family made the roughly four-and-a-half-hour drive to our Liberty Campus, which houses both the Proton Therapy Center and the Cancer and Blood Diseases Institute. 

The Proton Therapy Center not only has medical oncologists on the team who are experts in medulloblastomas, but also radiation oncologists who specialize in delivering proton therapy, Dr. Hummel said, adding, “And we have a social support system that supports people like Atticus coming from a long ways away so he can get through proton therapy to do well later on in life." 

Like Atticus, more than half of the patients who come to Cincinnati Children’s for pediatric proton therapy treatments travel from outside the area. 

A social worker from the Proton Therapy Center connected Maria and Josh with housing options and put them in touch with foundations and other community resources that could help with expenses.

The Special Role of Child Life Specialists

Another key support system for Atticus and his family was Cincinnati Children’s Child Life Program, which provides care that goes beyond medical expertise. The program’s certified child life specialists have significant clinical expertise in the developmental impact of illness and injury. Their role is to support families and provide opportunities for patients (and, often, their siblings) to engage in play-based activities that promote coping and normalization.

Carley Larkin, a child life specialist in the Proton Therapy Center, recalls being struck by Atticus’ intelligence the first time she met him, laughing that he’d used five words she had to look up later. “Atticus probably could end up having a better understanding of proton therapy than I do myself,” she said, adding that he was still scared, and he still needed a support person.

Maria remembers going to one of Atticus’ first proton therapy treatments and being hugged by Larkin. 

“Obviously, she could see on my face just the fear that was gripping me, and she just turned right around and bear-hugged me,” Maria said. “She just stopped and recognized my heart was breaking and did what she could to comfort me. It’s a core memory of mine. It solidified a lifelong relationship that we will forever have with Cincinnati Children’s.”

'Merely a Chapter' of Atticus’ Life Story 

After six weeks and 30 proton therapy treatments, Atticus and his family returned home.

Before they left the Proton Therapy Center, though, Atticus celebrated the end of his treatment with a bell-ringing ceremony in the lobby and added a pin to a world map on the wall, indicating his home in Nashville. The map includes pins marking the hometowns of all the kids who’ve gone through this highly specialized, advanced treatment at the center—a number surpassing 750 since its opening in 2016. And the center’s experts continuously work to develop other innovative and life-saving therapies.

“When you look at the map and see pins all over, [you know] there is a draw for families to come here,” Maria said. “Every single one of those pins represents the larger family of Cincinnati Children’s.”

“This is certainly not the ending within his book, just merely a chapter,” Maria said of Atticus’ life journey. “Our family’s here to provide hope [for others] that there’s so much more beautiful life ahead that’s possible.”

Maria now looks back on the time following Atticus’ diagnosis and the early days of his treatment, when she constantly asked why him and why their family, and knows she’s found the answer.

“I would have given anything, anything to have seen a child, like Atticus, two years out of that first portion of treatment being a normal kid, walking to the bus stop, studying for his accelerated math test, on the Science Olympiad team,” she said. “I did not know that was going to be possible. And if I can provide just a little bit of hope for another parent to cling to, then that’s the reason this happened. That’s it right there. That’s the why. [We were meant to be] that glimmer of hope.”

(Published April 2024)