The Millers entered that realm last fall when Gabriella started getting headaches and complained that her eyes were hurting. Her pediatrician dismissed the symptoms as allergies. But when her mom organized a trip to the nail salon for the girls in her class, she glanced at Gabriella and noticed that her cheek had drooped, giving her a slightly palsied look. Her husband assured her that Gabriella likely just slept on it oddly, causing a temporary distortion, so she shrugged it off.
The next day Ellyn told a pediatrician friend about Gabriella's drooping cheek. Ellyn recalls the sudden alarm in the friend's voice, as they were sitting by the pool enjoying a carefree Saturday, watching their kids swim. "She told me, 'Grab her right now, and take her to the doctor because it could be Lyme disease,' and she ticked off all these different diseases. She said, 'Don't play around with that.'"
Ellyn pulled Gabriella from the pool and headed to see the first of what would turn into an endless line of doctors.
Praying her 9-year-old didn't have Lyme disease, Ellyn managed to get Gabriella the last appointment of the day. The pediatrician wanted to order a blood test, but it was Saturday and they didn't draw blood then. The doctor suggested that Gabriella's mom take her to the hospital. But the Millers didn't feel like this was urgent enough to merit waiting hours in a hospital for a simple blood draw, so they decided to hold off until Monday. And then Hurricane Sandy hit.
The shops and restaurants were flipping their "Open" signs to "Closed" as the wind picked up and rain came thrashing down. Ellyn pounded on the door of a clinic, shouting "Open up!" The woman inside shouted back, "There's a hurricane!" Aliens could have been attacking for all Ellyn cared. "You've got to do a blood draw!" she yelled. Her persistence prevailed.
The results came back a few days later, and Gabriella was fine – on paper. But her cheek still drooped, and, to make matters worse, she started vomiting in the morning when she woke up. "I thought, 'Oh, gosh. On top of everything, now she's got the stomach bug," her mom says. "Then four days later she vomited again. I immediately fed her afterwards, and she was fine. I'm like, 'OK, something's really wrong.'"
The pediatrician ordered an MRI to try to figure out what was going on. Gabriella lay still as a technician slid her 3-foot 10-inch frame into the tubular scanner. The machine's jackhammer sounds assaulted her for an hour as it took pictures of her brain. Before leaving the hospital, a radiologist pulled Ellyn aside to show her the images. She pointed out a whitish mass.
"OK, there's something there," Ellyn remembers thinking, her mind racing. "It's on the brainstem. What does that mean? I don't know what that is."
She pauses. "You do, but you don't."
A Puzzling Mystery
While medical experts can rattle off statistics – boys have a 30 percent higher risk for developing cancer than girls, whites have a greater chance of getting leukemia than African-Americans, brain cancer comprises 27 percent of childhood cancers – they can't explain why a child develops leukemia or brain cancer in the first place.
"More than 90 percent of childhood leukemia causes are unknown. It's hard to prevent something if you don't know what accounts for most of it," says Martha Linet, chief of the Radiation Epidemiology Branch of the National Cancer Institute.
The small percentage of leukemia cases whose causes are understood occur in children who have Down syndrome or who have been exposed to radiation, which can also cause brain tumors. The most common form of radiation exposure is due to computed tomography imaging. Diana Miglioretti, a biostatistics professor at University of California-Davis, says CT scans are done far too often in children.
The number of CT scans performed on children doubled for those younger than age 5 and tripled among 5- to 14-year-olds between 1996 and 2005. "When you do 4 million scans a year in children, even though the risks [of cancer] are low, it can have an impact," says Miglioretti, who co-authored a study of CT use in pediatrics published in June in JAMA Pediatrics.