Little girl now cancer-free thanks to expert team, advanced treatment
By Josh Baxt
Janel Morin knew something was wrong. Her 4-year-old daughter, Emily, who should have been a bundle of energy, was spending most of her days in bed. On a trip to Disneyland, she slept the whole time.
“That was so strange,” Janel says. “What kid doesn’t get excited about Disneyland?”
Emily’s tests showed low thyroid hormone (hypothyroidism), and Janel was told that, with the right medication, everything was going to be fine. She made an appointment with Susan Phillips, M.D., an endocrinologist at Rady Children’s Hospital-San Diego and an associate clinical professor at UC San Diego.
But Emily’s condition worsened. She was sleeping 20 hours a day, and her right eye couldn’t focus. The family took Emily to an emergency room not far from their home in Murrieta but was again told there was nothing serious. Janel was not convinced, and with Emily’s condition continuing to decline, she called Dr. Phillips’ office for an earlier appointment.
To better pinpoint the cause of Emily’s symptoms, Dr. Phillips took a thorough history: Is she sleeping a lot? Is she waking up with headaches and vomiting? Is she thirsty? With each yes, it became clear they were dealing with a serious problem.
“I covered one of her eyes and asked her to reach for my hand, and she just couldn’t do it,” Dr. Phillips says. “It started as an evaluation for an isolated thyroid problem, but it was likely she was suffering from a brain tumor. I realized that between now and the next 20 minutes, I was going to have to tell the mom that her daughter has a tumor.”
Dr. Phillips eased into it, first letting Janel know that the problem was quite serious and Emily would need an MRI. She gave her a few minutes to take that in before telling her she suspected a tumor.
“At first it was so shocking, I just couldn’t believe what I was hearing,” Janel says. “But at the same time, I knew their goal was to take care of Emily, and I just had to trust what they told me.”
Even before the MRI was completed, Dr. Phillips called in John Crawford, M.D., a neuro-oncologist at Rady Children’s and an associate professor in the department of neurosciences at UC San Diego. The news was not good.
“Emily had a very large tumor in a very dangerous place in the brain,” Dr. Crawford says. “We had to get her into surgery as quickly as possible.”
The malignant tumor was encroaching on the hypothalamus, which controls hormone production and explained her thyroid issues. It had already destroyed the pituitary gland and severely damaged her optic nerve — Emily would never see out of her right eye again.
Rady Children’s neurosurgeon Michael Levy, M.D., a clinical professor of surgery at UC San Diego, was given a difficult job. He had to remove as much of the tumor as possible without damaging the sensitive structures around it. The procedure lasted eight hours. “Dr. Levy told me it was one of the toughest surgeries he had ever done,” Janel says.
But the surgery was just the beginning. Emily had an aggressive form of germinoma, a tumor that tends to break into little pieces. She would need chemotherapy and radiation to make sure it wouldn’t come back.
The family moved into the Ronald McDonald House, located on the Rady Children’s campus, as Emily slogged through the treatment – six months of chemotherapy followed by six weeks of proton beam radiation at the Scripps Proton Therapy Center.
The family opted for proton therapy after talking with Dr. Crawford and learning about its benefits. Proton treatment can be targeted more precisely than conventional radiation, limiting damage to healthy tissues — which is especially important for growing kids. Rady Children’s offers a pediatric program at the center, headed by Andrew Chang, M.D. (see sidebar).
“It was a team effort,” Dr. Crawford says. “Dr. Levy debulked the tumor, I hit it with chemotherapy and the proton team blasted it with radiation.”
The right place
Despite the intensity of her treatments, Emily weathered the process quite well. During it all, Janel did her best to stay upbeat. “You have to be strong for your child,” she says. “I didn’t want her to see how scared I was. I would take my shower and cry and then go back and be with her.”
Now 5, Emily recently started kindergarten, with no signs of cancer. But the struggle isn’t over. Her family and medical team will have to be vigilant for recurrent tumors, problems with her endocrine system and other issues.
Meanwhile, Emily’s family is both impressed by and grateful for the care she received. They remember the little touches, like the nurses, now friends, who they saw every day for months.
“It takes a special person to take care of someone all day long,” Janel says. “Ever since we started coming to Rady, I’ve put them on a pedestal. No one compares.”
Proton therapy: Advantages for children
Proton therapy has been successfully used with children for more than 20 years. Considered the
ideal form of radiation for pediatric patients who may require it, proton therapy targets certain tumors and cancers while leaving healthy structures relatively untouched.
The therapy involves the use of a controlled beam of protons to target tumors with a precision unavailable in other radiation therapies. At the Scripps Proton Therapy Center, the therapy can be delivered even more accurately with pencil beam technology. This is a big deal for children, who run the risk of having their growth slowed by radiation and the possibility of developing secondary tumors later in life.
“Traditional X-ray radiation damages the normal tissues that are around and behind a tumor,” says radiation oncologist Andrew Chang, M.D., chief of pediatric proton beam therapy at the Scripps Proton Therapy Center and a faculty member in the Division of Proton Therapy and Particle Research at UC San Diego. “Proton radiation stops within an eighth of an inch of where we want it to go, and this limits damage to healthy tissues.”
Numerous studies have shown proton therapy to be safe and effective for pediatric tumors. To see how patients are faring over the long term, Rady Children’s Proton Therapy Program is participating in national studies.
“We’re looking at side effects, school performance and secondary cancers,” Dr. Chang says. “Early
results have been positive, but we need to keep investigating.”
Originally published in The San Diego Union-Tribune, October 2015