Collaborative care at Rady Children’s and Children’s Hospital of Orange County helps a kid overcome an aggressive brain tumor
It started with slight weakness on his left side. Trent, then 8, began stumbling. He had trouble using his hand, experienced severe headaches, and fell while riding his scooter near his Santa Ana home.
Trent saw a doctor and eventually a podiatrist, who suggested his issues stemmed from a growth plate injury. But when a walking boot didn’t bring relief, his mom, Kelly, knew there was a bigger problem.
“I gave him a little bowl of snacks and, normally, he’d hold the bowl in his left hand and use his right hand to open a door or whatnot, but he kept asking for help,” Kelly recalls. “When he tried to put the bowl in his hand, it immediately fell. So I pretty quickly recognized that there was some sort of neurological issue because it was all happening on his left side.”
A visit to the emergency department at Children’s Hospital of Orange County (CHOC) revealed the worst: Trent had an atypical teratoid rhabdoid tumor (AT/RT), a rare and aggressive brain cancer. Though it can develop anywhere along the spinal cord or brain, it often affects the cerebellum, which controls movement and balance. AT/RTs primarily occur in children age 3 and younger and have a survival rate of just 20% to 50%.
“I thought it would expedite the process, to get him through emergency because I didn’t want to wait for a neurology appointment. I never thought that I was going to see a brain tumor on a scan.”
“In my mind, cancer happened to older people. Cancer wasn’t even on our radar. Now, I look back at pictures of Trent’s eighth birthday and think, ‘Wow, he has a brain tumor in these pictures.’”
Trent was rushed to CHOC’s oncology department, where physicians ran more tests and began building a care plan.
Coordinating Care Across Counties
Treatment for AT/RT typically involves surgery, chemotherapy, and radiation. Trent’s first step was surgical removal of the tennis ball-sized tumor. He was then referred to Rady Children’s for radiation therapy, chemotherapy, and to participate in a clinical trial of an experimental cancer drug.
“AT/RT is one of the most malignant and difficult-to-treat forms of childhood cancer. This type of tumor necessitates the whole gamut of treatment, including surgery, high-dose chemotherapy with autologous stem cell rescue, as well as craniospinal radiation therapy,” says John Crawford, MD, who was director of neuro-oncology at Rady Children’s during Trent’s care and now serves as division chief of child neurology at CHOC.
“Trent received all three. Understanding why patients like Trent respond so well to treatment could help us identify novel approaches to therapies.”
CHOC and Rady Children’s have collaborated for years on complex neuro-oncology cases like Trent’s. Both hospitals bring world-class expertise and access to advanced clinical trials not widely available elsewhere.
“San Diego County and Orange County are very different communities, but the thing that connects them is high-quality health care, both at CHOC and Rady Children’s,” says Dr. Crawford. “We’re now one unified team, and that provides us even more opportunities to move the needle in the fight against brain cancer.”
Protons Enter the Picture
For the radiation portion of Trent’s treatment, his doctors recommended proton therapy, a newer and highly targeted form of radiation shown to reduce long-term side effects compared to traditional X-ray radiation.
Rady Children’s operates the only clinic in California offering advanced pencil-beam scanning proton therapy specifically for pediatric patients. Unlike traditional X-rays that pass through the tumor and exit the body, proton therapy delivers the maximum dose directly to the tumor and stops—sparing surrounding organs and tissue.
“Trent had an AT/RT. It’s a very deadly cancer, but it can be cured in certain patients,”
says Iain MacEwan, MD, radiation oncologist at Rady Children’s and associate medical director of the proton center.
“In order to cure somebody of an AT/RT, you need to treat the fluid space of the brain and the spine because this type of tumor, although it arises in the brain, its cells can float around.”
Trent underwent a 30-day proton therapy regimen. Each session lasted about 20 minutes and involved lying flat on a moveable panel with a mesh mask to keep his head still while a 360-degree rotating arm delivered targeted protons. The treatment wasn’t painful and didn’t require anesthesia, but staying still was challenging—so child life specialists provided music and calming support.
“Trent’s parents came here knowing that AT/RT was bad and that the odds were not in his favor,”
says Jennifer Elster, MD, director of the Pediatric Proton Therapy Program at Rady Children’s.
“They embraced the unknowns of a newer treatment and a new drug because they trusted the science. Trent didn’t have an easy treatment course, but he got through it.”
Because Rady Children’s and CHOC already had a history of working together in pediatric oncology, Trent’s care transitioned smoothly between the two hospitals. If he got sick at home in Santa Ana, CHOC could quickly coordinate with his team at Rady Children’s.
“It was imperative for CHOC to communicate with Rady Children’s and Rady Children’s to communicate with CHOC,”
says Kelly. “The connection was there.”
The Road to Recovery — and Robotics
Trent’s treatment was considered a success. In October, he “graduated” from cancer patient to cancer survivor — having gone five years without a recurrence. He now receives regular MRI monitoring through CHOC’s ACTS (After Cancer Therapy Survivor) clinic and occasionally sees familiar faces from his care team at Rady Children’s, including Dr. Crawford.
“I have not been part of every chapter of Trent’s story but am thrilled to be reunited with my patient and his family,”
says Dr. Crawford.
“Trent has always and will forever be resilient. His bravery is the reason why many of us chose and continue to practice neuro-oncology. One patient can unite a team, a community — and that is exactly what Trent has done during his brain cancer journey.”
Trent’s mom, Kelly, says the experience was filled with fear but also hope and connection. “Trent’s diagnosis was very rare, and that was obviously very scary. But I never once felt that anyone treated us as if he was a lost cause,”
She describes his caregivers as “brilliant and so personable.
“There were definitely times that I didn’t know if we were on the track toward losing him. And I look at him now, and he’s doing things that I don’t know if anybody really thought he’d be able to do. He has everything that any other 14-year-old wants. He’s bright, he’s witty, he’s doing very well academically. To see him thrive — that means everything.
Today, Trent loves video games, rooting for the San Francisco Giants, and hanging out at the mall with friends. He’s preparing to enter high school and already has big dreams.
“Next year, I’m going to be working with engineering, so I’m excited for that,”
he says.
“Currently, I am learning how to create online music, so I’d like to dive into that as well. And I’m really invested in robotics. I would love having robotics as a career.”
He’s also proud to be the face of the Rady Children’s–CHOC partnership.
“I felt support from both sides. It was nice to know that I had not only one hospital caring for me, but two.”