Childhood cancer: A different battlefieldPosted: Updated:
Emma Kerr can tell you all about her fight for life, but she'd rather be playing video games. She gets fired up and animated when she plays even though she says the game is often rigged against her.
"I get really frustrated when they don't make fair teams."
Emma's family feels the same way about her battle with leukemia.
This month, 11-year-old Emma will be one of six race starters for the GCU Foundation's "Run to Fight Children's Cancer."
It has not, as you would expect, been an easy road. Over the past 14 months, Emma and her family have learned things about the way cancer in children is treated that have shocked them.
"While we're curing cancer, we're practically guaranteeing a future filled with more medical issues," Emma's mom, Ildi, said.
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Emma's fight started in the second half of 2014. At first, her health problems seemed easily explainable. First she complained about aches and pains after dance classes.
"We both thought, 'You're just growing. You need more rest,'" Ildi recalled.
When she starting feeling sick and nauseous, Ildi and her husband, James, thought it was "a regular flu or cold." But Emma didn't get better. Finally, not knowing what else to do, Ildi took Emma to the emergency room.
"And that night really just changed the rest of our lives."
She'd come to the hospital thinking Emma just needed fluids. At 1:30 a.m., doctors pulled Ildi aside to tell her Emma needed far more than that.
"I just remember my heart dropping when she said, ‘We're going to walk down the hall into another little room'" Ildi recalled. "I just thought, 'If she can't tell me whatever she's going to tell me in front of Emma's room then it's got to be bad.'"
It was. Doctors used a simple blood test to diagnose Emma with acute lymphoblastic leukemia, one of the most common types of cancer in children. Ildi knew right then it would be hard, but she had no idea how unfair this fight would feel.
"It's just hard sometimes," Emma says. "Sometimes you're going to have bad visits to the hospital. Sometimes you're going to feel like you don't want to do anything."
Emma spent much of 2015 either in the hospital or isolated in her home. School was hit or miss.
"She literally had no white blood cell count to fight any kind of infection so it was a lot of quarantining at the house, keeping [her] away from friends or large groups," Ildi said. "She was at the hospital in 2015 every month for the first eight months."
A turning point
By November of 2015 - a year after her diagnosis - Emma's treatment was progressing according to her doctors' plans. Then, right before Thanksgiving, she caught pneumonia. Her body stopped responding to treatment. The normally upbeat doctors stopped smiling.
"As a mom with a kid in the hospital, the scariest thing to see is doctors who look scared."
They moved Emma to the Intensive Care Unit. The family camped out and kept watch.
In early December, Emma, her younger sister, Abby, and their dance company were supposed to perform in the "Snow Queen" at the Herberger Theatre. With Emma in the ICU, Ildi slipped out of the hospital for a few hours to watch Abby dance.
"So I was not at the hospital when I got the call that she had gotten significantly worse and that I needed to get down there right away."
Emma had contracted valley fever. It's a fungus that can hit even the best immune system hard. For a child with cancer, it's like a tornado tearing through an old shed.
"It was at a point where the doctors really had conversations with us like, ‘How much do you want us to do?'"
For a year, Emma had fought bravely in the face of a deadly disease. Now they didn't know how much fight she had left.
"We talked about just preserving the quality of life and making sure the Emma that we go back was as close to the Emma that we started with."
For 10 frightening days, machines pumped fluids into Emma's body to keep her alive. Then, the little girl with a love of video games took over.
"Emma's such a fighter that within a couple days she turned it around," Ildi said. "So the doctor started smiling again. All of her doctors were just amazed."
What the Kerr family didn't know - what almost no one knows going into this - is that the drugs doctors used to treat Emma's cancer were, by and large, the same drugs used to treat adults with cancer. Emma is just getting a smaller dose.
The reason? No one's really developing drugs specifically for children with cancer. In the past 30 years, there's only been one new childhood leukemia drug approved for use.
"It's less than ideal. Is it a problem? Probably not."
Dr. Stacy Nicholson, physician-in-chief at Phoenix Children's Hospital, says drugs designed for adults have been used on children for decades and they do save lives. He notes children diagnosed with cancer now have an 80 percent survival rate. That's up from 65 percent a few decades ago.
"Kidsrespond pretty well to chemotherapy and radiation," he notes, "but that carries with it a lot of long-term problems."
Nicholson compared it to "carpet bombing" a battlefield. You kill the cancer, but there is collateral damage.
"We know there's a lot of innocent bystander cells that get hurt along the way," he said.
An estimated 70 percent of childhood cancer survivors have late-onset medical issues. Some of them are life-threatening or debilitating.
"Some drugs impact the heart, long-term. Some drugs impact the kidney. Almost every drug impacts the liver," Nicholson explained.
Long-term impacts are a concern for Ildi and other families dealing with childhood cancer.
"We have no idea what these high doses of basically poison are going to do in terms of the development of her organs, to her bones, to her brain capacity."
Ildi has nothing but praise for Emma's doctors at PCH. She believes they are doing amazing work. Her issue is with the current funding and research model.
Right now, 4 percent of National Cancer Institute funding goes to pediatric cancer research. According to Nicholson, most private drugmakers don't see a market for child-specific cancer drugs so they don't spend money to develop them. One reason is that a higher percentage of adults get cancer. However, some of the breakthroughs in treatment have actually come from the pediatric world.
With no new drugs, doctors have developed better protocols for the ones they have. To increase survival rates and ensure better quality of life for survivors, Nicholson says they need to take treatment to the individual level and attack cancer not by "carpet bombing," but with targeted airstrikes. Doing that will take a lot of time, expertise, and money.
"What's standing in the way is having enough people with enough time to do the work. And that comes back to research funding."
"We decided at the very beginning that we would take our cues from Emma," Ildi explained. "On the days when she is having a good day it is not OK for us to be having a bad day."
What started in late 2014 promises to continue through at least 2017.
Emma's bout with valley fever pushed back the end date of her cancer treatment plan. Her muscles atrophied. She has to use a wheelchair for now.
"It'll be months before she's back to dancing again but we know she will," Ildi said. "Children are resilient."
For now, Emma is happy to be at home, and she's looking forward to her role as a race starter on March 12. For her family, it's one day at a time.
"This process is really scary and it makes you more vulnerable than you can ever imagine."
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