Childhood cancer is devastating some Utah families.
It's the second leading cause of death among children aged 1-18, ranking behind accidents.Yet, in all its forms, the disease is still relatively rare. The chances of a Utah child getting leukemia or a malignant tumor during his first 15 years of life is less than 1 in 3,000.
Comforting statistics to most - but meaningless to the hundreds of children, fraught with fear and pain, who are treated annually at the Division of Pediatric Hematology/Oncology at Primary Children's Medical Center.
But today these youngsters, and their families, are not without hope. The mighty enemy isn't claiming as high a mortality rate.
"Twenty years ago, 80 percent of all kids with cancer died. Today, 70 percent survive," said Dr. Richard O'Brien, division director and professor of pediatrics at the University of Utah Health Sciences Center. "But the better results we get today are at a price. The price is very, very aggressive treatment that carries with it substantial side effects that the patient would rather not have."
Primary Children's cancer treatment team goes for broke.
The multidisciplinary team, made up of surgeons, radiation therapists and chemotherapists, commonly uses more than one type of treatment.
"By doing it that way, we are going for broke initially," O'Brien said. "By having an aggressive approach up front, we have much better results today."
Primary Children's dedicated cancer team is more than multidisciplinary; it's also comprehensive.
Physicians, nurse oncology specialists, social workers, dietitians, pharmacists, child-life therapists and volunteers team up not only to treat the disease, but the children themselves.
"It's absolutely critical when dealing with a child with a serious illness, whether it's cancer or not, that we think of that as a patient having a disease - rather than just a disease," O'Brien said. "Our job isn't to treat diseases. Our job is to treat children.
"If we just concentrate on eradicating the tumor and we ignore other important components of the child's physical and emotional health, our victory in curing the tumor is going to be a Pyrrhic victory."
Cancer is not contagious. But Primary Children's team of experts, who have treated children ranging from newborns to adolescents, has learned that the disease spreads emotionally through families. Thus, the patient's most important asset and support system - his family - isn't neglected.
"We see more emotional problems among siblings of kids with cancer than we do among the patients. They can't be ignored," O'Brien said.
Included in the comprehensive program are sibling sessions, during which the patient's brothers and sisters talk candidly with an oncology nurse about their feelings of resentment, guilt . . . or even fear. "Knowledge presented in a way that kids can understand takes care of many of the emotional problems," O'Brien said.
School sessions are also offered to help classmates understand their friend's repeated absences, baldness, weight gains and other side effects of the disease. Cancer symposiums for school personnel also are sponsored annually at the pediatric hospital.
"Very often if you know someone who has a serious illness and you don't know anything about it, what it does is create a phenomenal amount of fear. And fear causes avoidance," O'Brien said.
"Team members encourage other children to treat those with cancer like anyone else. If their disease is under control, the kids are happy and active," added Patricia Gamble-Hovey, team social worker. "We look for continuity to maintain as normal a lifestyle as possible."
Parents, who likely suffer most, aren't neglected, nor is their pain forgotten. "I don't know how parents do it. I am absolutely amazed how well they do under the terrible circumstances of watching their kids go through deathly ill, aggressive therapy with always the thought of `what is tomorrow going to bring? Is this darn tumor going to come back? Is the leukemia going to reoccur?' Living with cancer is hard."
To help minimize the pain of weekly and lengthy blood or bone marrow tests or ongoing chemotherapy sessions, Primary Children's combines medical therapy with play therapy in a colorful playroom.
"The playroom provides a setting that makes the delivery of medical care more humane," O'Brien said. "We don't want a child sitting in a room twiddling his thumbs wondering what's going to happen next."
The playroom provides a setting for child-life therapy - kids interacting with other kids who suffer from the same disease. Games, designed to help them explore and deal with their feelings, are played there.
Primary Children's multidisciplinary, comprehensive team concept isn't new or unique. But O'Brien says it's essential.
"The therapy of childhood cancer is changing so rapidly that it's essential that we have a close relationship between deliverers of care and the people in the lab trying to find out what causes the cancer," he stressed. "Research is the key to the improvement in survival rates for children with cancer."
To further this end, Primary Children's and the U. School of Medicine have been members of the Children's Cancer Study Group for nearly 20 years. The national group ties together a network of 30 children's hospitals and university departments of pediatrics that treat 60 percent of all children with cancer in North America.
The study group is sponsored by the National Cancer Institute. Its goal is to collectively develop, execute and evaluate new treatment programs for children with cancer.
"Because childhood cancer is uncommon, the participation of all the institutions that care for children with cancer in a cooperative national network is very important," O'Brien said. "We have data from huge numbers of patients which gives us a very large experience from which to draw."
O'Brien said the cooperative effort has yielded progressive and impressive improvements in children's survival rates.
"This involvement not only affords us the most modern medical treatment available, but takes us beyond what is being done today to what we are thinking about doing tomorrow in the treatment of childhood cancer," he said. "And that knowledge can't help but benefit our patients today and in the future."