For questions about the merger of CHOC and Rady Children’s Hospital San Diego, Trent Cirigliano, 13, is your man.
He won’t be able to tell you about the high-level business stuff.
But he’ll be able to discuss the expert and loving care he received at both hospitals after being diagnosed, at age 8, with a fast-growing malignant brain tumor – a rare cancer that has less than a 40% chance of being cured in the first 18 months.
“I would say it’s miraculous,” child neurologist Dr. John Crawford, division chief of child neurology at CHOC, says of Trent’s recovery.
Trent and his mother, Kelly, might use the same word to describe living in a region served by the two hospitals, which are uniting their strengths under Rady Children’s Health.
New opportunities
Dr. Crawford, co-medical director of the CHOC Neuroscience Institute, has been a familiar face during Trent’s care.
He was director of neuro-oncology and founding member of the Molecular Tumor Board (MTB) at Rady Children’s when Trent was sent there in 2019 after being diagnosed and undergoing surgery at CHOC.
And since joining CHOC in 2022, Dr. Crawford has been seeing Trent to monitor and treat him for seizures associated with his tumor.
“Both hospitals have world-class neuro-oncology programs,” Dr. Crawford says, “and being able to harness our respective expertise is just going to make us better.
“There are opportunities to share knowledge, clinical trials and research, and really improve the lives of children with brain tumors across the spectrum of pediatrics and into early adulthood, as well.”
Troubling signs
Trent stopped running the bases aggressively.
Then he had trouble using his left hand.
Then he experienced really bad headaches.
Trent’s mother, Kelly, recalls the early signs that something was wrong with her gregarious and intelligent son when he was in the fifth grade and an avid baseball player.
After taking Trent to CHOC, Kelly and his father received the grim diagnosis: Ayptical Teratoid/Rhabdoid Tumor (AT/RT), a cancer of the central nervous system that affects the brain and spinal cord.
“I’ve only seen a handful of patients with these tumors who have survived,” says Dr. Crawford, who spent 13 years at Rady Children’s before joining CHOC.
Trent’s tumor, located underneath the crown of his skull at the top rear, was the size of a tennis ball.
CHOC pediatric neurosurgeon Dr. William Louden resected the tumor and CHOC sent Trent to Rady Children’s to participate in a clinical trial – routine for a child with his type of serious and highly aggressive cancer.
The proton therapy advantage
Before the clinical trial, which involved the use of the experimental, targeted immunotherapy drug Alisertib, which helps find and attack cancer cells, Trent underwent proton therapy.
Rady Children’s has the only pediatric program in California that provides the most advanced pencil-beam scanning proton therapy for children with brain, solid tumors, and lymphomas. CHOC has long sent oncology patients to Rady Children’s for proton therapy treatment.
The program has grown five-fold, to some 15 patients a month, in less than a decade, says Trent’s oncologist in San Diego, Dr. Jennifer Elster, co-medical director of the Pediatric Proton Therapy Program and clinical director of the pediatric neuro-oncology program at Rady Children’s.
Unlike traditional X-ray radiation that pierces tumors and then blasts out on the other side of them, exposing surrounding tissue to radiation, proton therapy limits that.
“Protons are particles, not waves – think of them as subatomic bowling balls,” Dr. Elster explains. “The particles stop inside the tumor and release their highest concentration of energy, and nothing scatters out the other side. That makes a difference no matter how old you are, but if you’re a child it makes an enormous difference.”
Proton therapy, because of this lack of scatter, causes fewer side effects both during treatment and in the long-term than traditional radiation. It reduces the risk of infertility and hearing loss as well as problems with long-term neurocognitive issues.
Traditional radiation also can require blood transfusions, Dr. Elster adds. Trent did not need to receive any transfusions during the one month of proton treatment.
Only ‘the best parts’
Trent’s proton therapy treatment involved his entire spine and head.
During the 30 sessions of 15 to 30 minutes, he lay flat on a moveable panel, his head and spine covered by breathable stiff netting clamped down to keep him immobile because of the millimeter precision of the treatment.
To shoot the protons into the tumor from nearly every possible angle, the panel rotated inside a circular machine that also whirled around 360 degrees.
He says listening to his favorite music helped.
For about two years, Trent was either at Rady Children’s or CHOC. He frequently was a patient in CHOC’s Emergency Department after falling ill during breaks in his chemotherapy regimen, a common side effect, and to make sure his medicine port on his chest didn’t get infected.
Kelly and Trent say the care they received made their medical odyssey much more tolerable. They were especially grateful for the Child Life departments at both hospitals.
Trent had to learn to walk again and undergo physical and occupational therapy, with a particular focus on his left hand and arm, which fell limp because of his brain tumor.
“It was a lot,” Trent says of his medical journey. “It’s weird because I don’t remember a lot of it. Both hospitals did such a job that I only remember the best parts.”
Long-term survivor
In October 2024, Trent graduated from cancer patient to long-term cancer survivor.
He is being followed at CHOC’s ACTS (After Cancer Therapy Survivor) clinic for MRI reviews of off-therapy late effects management, says his CHOC neuro-oncologist, Dr. Pournima Navalkele.
Although he doesn’t play any instruments like his musician mother, he thinks he’d be a good fit working in the music industry – that or robotics, one of his current passions as he readies to enter high school this fall.
“I can do pretty much anything now,” says Trent, still limited in the use of his left hand.
He and Kelly say keeping positive and telling each other funny stories during treatment at CHOC and Rady Children’s was critical to their journey – an attitude that staff at both hospitals encouraged.
Kelly says when the cancer treatment ends, the journey continues.
“It’s life changing,” she says. “When you have a child for the first time it opens emotions in you that you never realized you had. And when your child gets seriously sick, that opens a depth of fear, sorrow, and empathy you’ve never experienced. But because you feel this, you feel an even deeper level of love.”
Unanswered questions
CHOC still participates in the Molecular Tumor Board at Rady Children’s. Created in 2017, the MTB consists of physician-scientists, clinicians, and researchers in the field of tumor genetics.
The board recommends advanced testing, including rapid whole genome sequencing, for some children with tumors in their brains or spinal cords. Members of the MTB study the results of these tests and try to detect the novel mutations and pathways involved in tumor growth.
“We need to understand why children respond to therapy and why children don’t, and that’s really a focus of our combined growth,” Dr. Crawford says. “Those are questions we really need to answer: What are the molecular, clinical, and radio-graphic predictors of response to therapy? And we really don’t know that yet.”
What Trent and Kelly do know is they were in great hands at CHOC and Rady Children’s.
“We had the best of both worlds,” Trent says.
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Learn more about CHOC’s Neuroscience Institute
CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2024-25 Best Children’s Hospitals rankings and ranked in the neurology and neuroscience specialties.
