As summer's end approaches, most 10-year-olds might dash outside on a warm Friday evening with a bike or a bat and ball. Not Gabriella Miller. Gabriella lugs a dented blue frying pan in one hand and a bag of walnuts in the other.
She crouches down on the porch, touching her knees to her chest. Before her is a lime green plastic cutting board her mom set on the ground. Emerald green and magenta toenails peek out from her fuzzy pink frog pajamas. Silver flip-flops make her seem at least an inch taller, but it's not height Gabriella needs to gain. Just 42 pounds, most girls her age are about 30 pounds heavier.
She plucks a walnut from the plastic bag and sets it in the center of the board, just as she's done in Philadelphia, a Chicago suburb, on the National Mall and even on top of the Eiffel Tower in Paris. Tonight, she's home in Leesburg, Va., engulfed in the warm glow of the porch light, but her purpose is the same. Gabriella looks into her father's iPad, her hazel eyes flashing, and says the words she's repeated in Philadelphia and Chicago and Paris. "Hi, my name is Gabriella Miller. I'm 10 years old, and I have brain cancer."
Raising her skinny arms above her head with its patches of mouse brown hair that were once nearly black, she lifts the pan and brings it down upon the walnut with surprising force.
Fragments scatter into the darkness, just as they have nearly every night since last November, when she began the ritual attack on this proxy for her tumor. Back then, Gabriella's cancer was just the size of that walnut. With radiation and experimental drugs, her tumor has shrunk. Not so the incidence of cancer in children. For reasons even experts don't understand, cancer rates in young children are, ever so slowly, growing.
The Rise in Childhood Cancer
Childhood cancer is the leading cause of disease-related death among children ages 1 to 14. To put it in perspective, about two classrooms full of kids receive a cancer diagnosis each day. About 10 to 20 children out of every 100,000 develop cancer annually, according to the National Cancer Institute. Though it may sound like a relatively small ratio, the rate has been slowly rising since the institute began tracking the rate nearly four decades ago. In 1975, researchers recorded about 11 cases per 100,000 children. In 2010, they reported 16.8 cases per 100,000.
While there are a dozen potentially deadly childhood cancers – lymphoma, neuroblastomas, and bone cancer, to name a few – two lead the pack, striking the most kids in recent decades: leukemia and brain cancer.
The incidence of leukemia has risen from 30.2 cases per million in 1975 to 42.2 cases per million – 34 percent of all childhood cancers – in 2010. The cancer begins in the bone marrow, where oxygen-carrying red blood cells and infection-fighting white blood cells are born. Acute lymphocytic leukemia, the most common childhood leukemia, develops when healthy white blood cells, or lymphocytes, multiply wildly and crowd out normal cells. Brain cancer, on the other hand, occurs when cancerous cells begin massing into a tumor that invades healthy brain tissue. This can cause headaches, nausea, vomiting, or a change in vision, hearing, memory or balance. A relatively rare cancer overall, the rate of brain cancer has remained steady since the mid-'80s when MRIs were introduced and used to diagnose the disease. Brain tumors are more common among adults, yet they still are found in about 4,100 kids each year in the U.S.
Gabriella is one of the unlucky ones, but she's determined to battle the disease.
She calls herself a "childhood cancer warrior" and has launched a one-child campaign on behalf of the estimated 12,060 children younger than 14 who were diagnosed with cancer last year.
"When a parent has a nightmare about their child, it's not about a doctor saying, 'Your child has cancer,'" says Gabriella's mom, Ellyn Miller. "It's about you can't find your child, or your child is hurt. But it's never about cancer. That's so above and beyond horrific, that it doesn't even enter into a realm of possibility."
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.
The study found that children younger than 5 years old had the greatest risk of developing leukemia after a CT scan of the head – the most common site scanned in children.
The researchers also discovered that for every 5,250 head scans performed for children younger than age 5, one child developed leukemia. The risk for children ages 10 to 14 was 1 in every 21,160 head scans. Miglioretti says that while the lag time for the onset of disease is longer for other cancers – it may take seven years for a girl who had a chest CT to show signs of breast cancer – leukemia may develop as soon as two years after the scan.
Meanwhile a 2012 study by researchers at the Newcastle University's Institute of Health and Society in England found children who received a dose of at least 50 milligray (a measure of absorbed radiation) were 2.8 times more likely to develop brain cancer; children who received at least 30 milligray were at a 3.2 times greater risk of leukemia. Miglioretti and her team estimated that lowering the highest 25 percent of doses to the median level – which varies based on age and the organ targeted – could prevent about 43 percent of childhood cancers.
The radiation studies, as well as ones that document atomic bomb survivors, provide one clue as to why kids develop leukemia and brain cancer. But what about those who have never been in a CT scanner or nuclear fallout zone yet find out they have malignant cells?
Some researchers, like Jun Li, think geographic location might play a role. Li, an epidemiologist with the Centers for Disease Control and Prevention's cancer prevention division, conducted the first study in the U.S. to determine cancer incidence rates by geographic region for children from birth to age 19. Li drew on 2001-2003 data from the National Program of Cancer Registries and the NCI's Surveillance, Epidemiology and End Results statewide registries, which represent more than 90 percent of the country's population.
Based on the 36,446 cancer cases in the study, Li found the Northeast had the highest incidence of all childhood cancers combined, in addition to the highest incidence of brain tumors. The west coast had the highest rate of leukemia.
U.S. News asked Li to evaluate the regions again to include data through 2009 (the most recent year with reported data), and he found the same results. In 2009, Colorado had highest inland rate of leukemia at 5.5 cases per 100,000 (Hawaii's rate was 5.7), while Utah had the highest rate of brain cancer at 4.8 cases per 100,000. (Rates could not be calculated for some states with fewer than 16 cases.)
Map by Heather Brady
Map by Heather Brady
The trouble is, Li is still struggling to explain the variations. "It could reflect the differences in a lot of things such as the genetic background in the population … it may also reflect some variation in the health care system like access to care and insurance, and the larger level would be environmental," he says.
Kim Ritchey, of the Children's Hospital of Pittsburgh of UPMC and president of the American Society of Pediatric Hematology/Oncology, says each state's caseload is so small that minor variations may appear to be significant when they're not. He also says state-by-state comparisons yield no meaningful patterns.
Li holds out hope that future studies, including a CDC trend analysis study of childhood cancer rates from 2001 to 2008, will yield more useful information. "I'm afraid there's no solid conclusion on childhood cancer [causes]," he says. "If we knew, we would share it with you."
There's been plenty of speculation, often centering on environmental factors – such as exposure to toxins, pesticides and cleaning chemicals – or foods a mother ate during pregnancy. Ritchey dismisses those theories, especially as they relate to leukemia. "The bottom line is there's never been any environmental [factor] that's been proven to be a cause of childhood ALL [acute lymphocytic leukemia]," Ritchey says.
He adds that he often finds himself trying to diffuse the anxiety of parents who blame themselves and feel they did something wrong – such as giving their child something harmful to eat or exposing him or her to someone with leukemia. Ritchey reassures them that the disease isn't contagious. "I try to say, 'No, that's not the case.' We really do think it's a genetic mistake, and it's nothing [you could] control."
Focusing on the Fight
Ellyn says she doesn't think about the why. It's the one question she doesn't ask.
"It doesn't do me any good. There's nothing we can do to change this. It's not as if you have an adult who gets liver cancer because they're a drinker or who gets lung cancer because they're a smoker, and they can look back and say, 'I shouldn't have done that.' Gabriella didn't do anything," she stops, and then repeats, "She didn't do anything."
Gabriella started radiation treatment last year, two weeks before Thanksgiving. Ellyn, 45, was about to start a new job, but decided that Gabriella needed her at home instead. Her husband Mark, a 41-year-old real estate agent, also wanted to stay home, but Ellyn put the kibosh on that plan, knowing it would only set off alarm bells for Gabriella. She said life needed to continue like "normal."
For the next six weeks, it was anything but. Monday through Friday, Ellyn drove her daughter an hour to Inova Fairfax Hospital for radiation sessions. Not allowed to stay in the treatment suite with her daughter, Ellyn sat in the waiting room crocheting a hot pink scarf for Gabriella's 10th birthday.
"When it ended, there's supposed to be such this joy, but as it was coming to a close, I had such anxiety and wasn't sleeping," Ellyn recalls, saying she felt helpless and wanted to do more. Next came a year-long clinical trial involving an experimental drug. While Gabriella's health remains uncertain, thanks to the intensive treatment her inoperable tumor has shrunk about 80 percent – to the size of a pecan.
Talking with Gabriella, you'd never know she's been in the hospital more than most 70-year-olds. Her bubbly personality masks all the scans, needles, vomiting and fatigue she's endured. "I like colors," she chatters, perched on the edge of her couch dressed in a black dress with lime green, red, blue, orange and yellow ruffles. "I like bright purple. And I love stuffed animals," she says, giggling, as she wraps herself in a monkey her size. "I have about a million."
The fifth grader also loves school, particularly language arts. Gabriella once used to write poems about fairies. Now she writes about the other children she meets in the hospital – the friends she's made and lost along the way.
Hope, helps us get better.
Hope, gives us another day to look forward to.
Hope, helps us believe we can survive.
Hope can help us win this battle.
And if all else fails, Hope can lead the others to win the war.
And by Hope, I mean a little girl, a little girl – with cancer.
Gabriella says scribbling words on paper – like the poem above about her friend who was diagnosed with leukemia – helps her "get it all out."
Last winter, Gabriella drew the attention of the national media for a different kind of writing. During the holidays, Macy's pledged to donate a dollar to Make-A-Wish for every letter the retailer received to Santa. The foundation had granted Gabriella's wish to visit Paris, and she wanted to other kids get their wishes granted too. So Gabriella started a letter-writing campaign to try to bring in 10,000 more Santa letters to boost the store's contribution. The initiative went viral; 250,000 letters flooded in. Bowled over, Macy's donated an extra $25,000, which covered 36 wishes for kids like Gabriella.
Her newfound fame propelled her into publishing. In honor of Childhood Cancer Awareness Month in September, she collaborated with author Cindy Chambers for a book called "Beamer Learns About Cancer," about a dog and a boy named Kyle who learn how cancer cells are formed and what it's like to be a patient in the hospital. For Gabriella, it was the realization of a dream. "I want to be an author," she says.
She's also received warm personal letters from a number of politicians, including President Barack Obama, praising her bravery and dedication to helping others. On the last day of school, Virginia state delegate Randy Minchew showed up during an assembly and issued a proclamation from the Virginia Assembly recognizing Gabriella's accomplishments. While she appreciates the accolades, Gabriella just wants the world to know that kids get cancer too.
Tucked between her mother and father on the couch, Gabriella spews out cancer stats like an expert, noting that 36 kids are diagnosed with cancer each day, and four to seven die. "There's over $5 billion a year that goes to cancer [research] and less than 4 percent goes to childhood cancer alone," she states matter-of-factly. "If less than 4 percent went to leukemia, less than 4 percent went to brain cancer, that would be fine, but less than 4 percent goes to all childhood cancers combined. That's not fair. It's not fair for kids to have to go through this.
"When are these people going to start helping?" she asks, wondering: Will they have to hear, "Your child has cancer?'"
The Ultimate Wish
Soon after Gabriella's diagnosis, her mom likened the tumor to a walnut. The Millers seized on the comparison, prompting Gabriella to declare her proxy war. Her activism has had a demonstrable impact on those who've been touched by her. "The grocery stores around here are running out of bags of walnuts," her father exclaims. "Everyone around here is going out and buying them to smash."
But for all the hundreds of walnuts that have been bashed to smithereens, there's only one that Gabriella would really like to destroy.
"I wish we could take the pan to my head, and it would come right out," she says. "I really wish."