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Omahan Kellie Beresh remembers well the devastating side effects of the cancer treatments that have kept her son Jake alive in the 10 years since doctors discovered a lemon-size tumor on his skull.
One side effect that was particularly gruesome: a gaping hole in the then-6-year-old's scalp, caused by a radiation burn.
“I could see the bone behind his ear,” she recalled.
Sickened by the sight and aching for her child, she told the radiation oncologist, “I can't bring him here anymore for you just to burn him.” The oncologist grabbed her by the shoulder and said, “You don't have a choice if you want your son to live. You're going to bring him back tomorrow.”
Beresh and other parents of kids with cancer are grateful their children survived the chemotherapy and radiation — many kids die of cancer before they finish chemo. But the parents are frustrated by the treatments' long-term side effects and what they see as a lack of updated treatment regimens, saying the medical weapons used to battle some cancers haven't changed much in the past 25-plus years.
That concern has been in the spotlight recently as 7-year-old Jack Hoffman of Atkinson, Neb., has been honored with a run in the Huskers' spring game, a U.S. Senate resolution by Sen. Deb Fischer, R-Neb., and a meeting with President Barack Obama.
The parents of Jack, Jake and other pediatric cancer survivors have turned their frustration into action, making themselves experts on research in progress and leaders in fundraising efforts.
Eight years ago, Kellie Beresh helped start an annual walk for the CureSearch for Children's Cancer foundation. Beresh expects the total from the event scheduled for June 1 at the Village Pointe shopping center to push the total raised past $1 million. CureSearch now holds about 50 such walks across the country.
Earlier this year, the family of Jack Hoffman presented a $275,000 check to pediatric brain cancer researchers at the Dana Farber Cancer Institute in Boston, along with CureSearch and the Uplifting Athletes group. Jack's parents recently started their own foundation, the Team Jack Foundation, to raise money for research. Prior to that, the CureSearch Legacy Fund had taken in more than $300,000 through donations and Team Jack T-shirt and wristband sales.
Jack's dad, Andy Hoffman, said physicians and scientists are conducting clinical trials and working on better treatment options, “but it's not enough, and it's not fast enough.”
More than 12,000 new cases of pediatric cancer were diagnosed in 2012 in children up to age 14, according to an estimate from the National Cancer Institute. (Some groups count childhood cancer cases up to age 19, increasing the total to an estimated 13,500.) The major types of childhood cancers, the institute says, are leukemias and brain and other central nervous system tumors.
The 12,000-per-year (or 13,500) number compares with nearly 143,000 new cases of colorectal cancer and 227,000 cases of breast cancer.
Funding levels roughly reflect the differences.
The National Cancer Institute's investment in pediatric cancer research was $196 million in 2011, compared with $265 million for colorectal research and $625 million for breast cancer research. Private groups, including the foundations established by parents, also raise research funds.
Hoffman said advocates for pediatric cancer research aren't arguing that research dollars be redistributed.
“We shouldn't be fighting to reallocate cancer research dollars from this cancer to that cancer,” he said. “We should be making the pie bigger.”
The pediatric cancer advocacy group People Against Childhood Cancer says funding should take into account that the average child has many more years to live than the average adult. A child who dies of cancer loses many more potential years of life than a man diagnosed with, say, colorectal cancer at age 68, the median age for such a diagnosis in the United States.
Using 2009 figures, the group notes that when calculating the amount of cancer institute spending per years of life lost to cancer, research into childhood cancers got $940, while breast cancer research got $2,172 and colorectal cancer received nearly $5,000.
Researchers have made great strides in reducing childhood cancer deaths in recent years. For example, five-year survival rates for children with acute lymphoblastic leukemia, the most common form of childhood blood or bone marrow cancer, increased from 58 percent in the mid-1970s to 91 percent in the mid-2000s.
But for some childhood cancers, the survival rate remains poor. And the harsh treatments are hard on growing bodies.
The lack of new, nontoxic therapies for childhood cancers is frustrating for oncologists as well, said Dr. Bruce Gordon, chief of the division of hematology and oncology at the University of Nebraska Medical Center. “We use tremendously toxic therapies. It's horrendous that we still have to use chemotherapy for kids with cancer. ... You wouldn't use it for something that isn't going to kill you.”
Children undergoing radiation treatments for brain cancer can face cognitive impairments, said Rebecca Kirch, the American Cancer Society's director of quality of life and survivorship. “They're radiating (kids') heads, but their brains are growing. ... These kids can often experience a lifetime of side effects, even if they survive.”
Kellie Beresh said chemo today is “as harsh and as brutal as it always has been,” although newer medications can help patients cope with it.
“They have drugs to help support them through it, drugs that help with the nausea and drugs that help with trying to get their (white blood cell) counts up faster,” Beresh said. “I can tell you names of kids who had chemo and died from it because their bodies shut down.”
Jake Beresh is 16 now, a sophomore at Millard West High School. You still can see the scar behind his right ear from where the hole was. The radiation also caused permanent hair loss on the right side of his head, so he keeps his hair short overall.
“People still ask 'Oh, so does your sister cut your hair or something?'” said Jake, who is the oldest of the Bereshes' three kids, all boys. “I'm, like, 'No, I had cancer when I was younger, and radiation burned all my hair away, and that's why it's like that.'”
When doctors at what now is Children's Hospital & Medical Center started Jake on one chemo drug, Kellie Beresh said, they said it would cause heart damage, noting, “When he was done, he would have the heart of a 60-year-old.”
Jake has low-normal heart function and can't lift heavy weights. But his mom said he's fortunate; some kids who have had the same treatment have required heart transplants.
Surgery to remove the Ewing sarcoma tumor on his skull required taking parts of the bone. Surgery years later to remove scar tissue and accumulated mucus took more of it. The missing bone means he can't play contact sports, and his face is asymmetrical, but you have to look closely to notice it.
In January 2012, Jake developed bacterial meningitis, which can be fatal. He responded well to antibiotics, but after three weeks on large doses of the drug, he experienced severe pain. Tests showed that he had developed gallstones, a rare potential side effect from the antibiotics, and had diminished liver function. Both problems went away after he went off the drugs.
“Because he's a cancer kid and because those organs are not normal kid organs,” his mom said, “they are going to react differently to medicines.”
Jake also said he gets sick a lot and must be on antibiotics for a few weeks even with a minor cold.
Doctors say progress on new treatments is being made, but it takes time.
Information gleaned from the Human Genome Project, which identified the 20,000 to 25,000 genes in human DNA, is “changing the ways we look at all cancers at the molecular level,” said Dr. Ken Cowan, director of the Eppley Cancer Center at UNMC. “We're more focused on genetic changes that drive a person's particular cancer.”
Over the next three to five years, cancers won't get “lumped together and treated in a generic manner,” said Dr. Amar Gajjar, co-chairman of the oncology department at St. Jude Children's Research Hospital in Memphis, Tenn. “You'll be treated in terms of the type of tumor you have.”
Gajjar, who is co-leader of St. Jude's neurobiology and brain tumor program, said genomics “has given us this information about the different subtypes of brain tumors. What we're doing with the information is creating mouse models or tumors in mice that mimic the human tumor” and testing new therapies that can lead to “smarter chemotherapies that are targeted against the molecular subtype of the brain tumor.”
Researchers funded through a $14.5 million grant from Stand Up 2 Cancer and the St. Baldrick's Foundation also are studying efforts to harness the body's own immune system to eradicate cancer. They plan to bring together immunotherapy and genomics to develop new, targeted therapies for childhood cancers.
For pediatric cancer patients and their families, the changes can't come soon enough.
Aside from the treatment side effects, Kellie Beresh said, she and her husband worry that Jake's cancer could return.
“Sometimes people think you have cancer and then you have the treatment and you're good to go. Especially with kids, there's no such thing as ever leaving it behind.
“Any time he gets a cough, or says 'Oh, my knee hurts,' 'My shoulder is kind of hurting,' my husband and I — the first thought in our heads — is, 'Could that be cancer?'”
Jake, for his part, is philosophical about his condition. “It made it easier to recognize that there's issues in all of us and that it can happen to anyone,” he said. “Anyone can have problems. Life is short, as they always say.”
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» The incidence of invasive pediatric cancers is up 29 percent in the past 20 years.
» Cancer is the leading cause of death by disease in children under age 15 in the U.S.
» One in five children diagnosed with cancer will die within five years.
» One in three children diagnosed with cancer will not live out a normal life span.
» Seventy-four percent of childhood cancer survivors have chronic illnesses, and some 40 percent of childhood cancer survivors have severe illnesses or die from such illnesses.
» Childhood cancer survivors are at significant risk for secondary cancers later in life.
» Cancer treatments can affect a child's growth, fertility and endocrine system. The immune systems of child survivors may be permanently suppressed.
» Radiation to a child's brain can significantly damage cognitive function, or if radiation is given at a very young age, it can limit the ability to read, do basic math, tell time or talk.
Source: People Against Childhood Cancer
Common side effects that children may experience as a result of current treatment protocols
» Cognitive problems including delayed speech or problems with reading, writing and memory retention
» Fertility problems
» Secondary cancers later in life
» Loss of limbs, or limbs whose growth was stunted
» Cataracts, poor vision, damage to the optic nerve or other effects to the eye
» Hearing loss
» Cardiac problems including an abnormal heartbeat, congestive heart failure and increased risk of a stroke or blood clots
» Kidney failure
» Weak or thin bones that can break easily
» Anxiety and depression
» Teeth and jaw problems including missing teeth, smaller teeth, tooth decay and gum disease
Source: Alex's Lemonade Stand Foundation