A 4-year-old child shouldn't have to know what a Broviac catheter is. But Caroline Parkinson does. She has one--and so do most of the other kids she knows.
She also knows that a bone marrow aspiration hurts, but a bone scan doesn't. She can't begin to comprehend the principles of physics behind magnetic resonance imaging, but she understands that you have to lie really still or it won't work.
"Mommy, I'm on a monitor," she announced the other day, matter-of-factly, sitting in her bed in the oncology ward at Childrens Hospital of Orange County. During the past year and a half, she has spent about six months, off and on, in the hospital.
Her Shirley Temple curls are gone now--they fell out during her first round of chemotherapy. And if it weren't for the baldness, you'd never guess that she was sick.
Caroline has rhabdomyosarcoma, a form of childhood cancer so rare that it is diagnosed in only one in 2 million children. But to her, the muscle tumor that grew behind her bladder is simply "a bump in my tummy."
The words "childhood" and "cancer" just don't seem to belong together.
Childhood is supposed to be carefree and innocent--a few bumps and scratches and sniffles, naturally, but otherwise insulated from the specter of illness and death. And cancer, if it must exist at all, seems more suited to the world of adult worries such as checkbook balances, office politics and international instability.
Fortunately, the two don't often coincide.
When they do, the very rarity of childhood cancer makes treatment and research more difficult, because there aren't enough young cancer patients at any one hospital to allow doctors to conduct statistically meaningful research, says Dr. Geni A. Bennetts, director of hematology/oncology at CHOC.
And because the various childhood cancers, occurring as they do in rapidly growing and changing bodies, are so different from the more common adult forms, treatment information gleaned from adult studies is only partially useful at best, she says.
So Bennetts, her fellow physicians at CHOC and more than 2,000 of their colleagues at 30 medical institutions nationwide pool their knowledge and resources through the Children's Cancer Study Group, a networking program administered by the National Cancer Institute.
The program has been in operation for close to 30 years now, and in that time, the 5-year survival rate for childhood cancers overall has risen from around 10% to more than 70%, nationwide, as well as at CHOC.
Bennetts, who started at CHOC in 1977 as an attending physician and took over the department in 1980, has seen many young patients grow into healthy adults. Since 1980, Bennetts says, more than 300 CHOC cancer patients have participated in the study group.
"Twenty-five or 30 years ago, about all a doctor could do was say, 'Your child has a couple of months to live,' " Bennetts says.
That's pretty much what the doctor who found Caroline's abdominal tumor told her parents in June, 1988.
"Back when (the doctor) was in medical school, it was considered terminal," says Caroline's mother, Elizabeth Parkinson. "Take the worst nightmare you could possibly have and multiply it a thousand times--I fainted."
Caroline was only 3 then, and except for the spots of blood that suggested something was wrong, she had no symptoms.
The doctor also told Elizabeth Parkinson and her husband, Mark, to take their daughter to CHOC. As they drove toward the hospital from their Newport Beach home, "it felt like we were driving to a death," she says.
After two days of tests, the CHOC doctors gave the Parkinsons quite a different prognosis. Caroline's chances of survival were 60% to 70%, they said. And her best hope, they explained, was to become part of the Children's Cancer Study Group. The Parkinsons agreed, and suddenly their daughter was not only a cancer patient, but a research subject.
"We would have taken her anywhere to get the best possible treatment," Mark Parkinson says. "But with the Children's Cancer Study Group, it didn't matter, because just about every doctor in the country who deals with this kind of tumor was plugged into the program."
Almost immediately, Caroline was in surgery, where doctors installed her Broviac catheter--a direct link to her bloodstream so that she could receive chemotherapy and other intravenous drugs without being turned into a pincushion.
The first course of chemotherapy was grueling.
"She was vomiting every 10 minutes, and she had so many sores inside her mouth that she didn't talk for weeks," her mother says. "It's so hard to take a child who looks so healthy and put them through that."
But the drugs shrunk the tumor to a small clump of cells, and now, after follow-up chemotherapy and radiation treatments--the entire treatment regimen prescribed by the national program--Caroline's chances of survival have risen to 85%. She still must come back to the hospital every month for 5 days of chemotherapy, until her doctors are confident that the tumor is unlikely to grow back.