ST. LOUIS -- Living in the moment is not uncommon when a family has a child struggling with cancer: family members need to get the facts, commit to sometimes grueling treatment and hold their lives together.
But as the numbers of childhood cancer survivors increases nationwide, so too has the understanding that cancer, and the treatments used to fight it, can result in medical, educational or personal complications years later.
St. Louis Children's Hospital has developed a Late Effects Clinic to monitor and help childhood cancer survivors.
"To me, it's the most exciting part of oncology right now," said nurse practitioner and program coordinator Jeanne Harvey. "Now, what I want them to think about is that they're going to be around for a long time, and we talk to them about things they can do to be healthy."
But the relief of surviving cancer can be mixed with long-term struggles against its complications.
The strong chemotherapy and radiation treatments that helped kill children's cancer cells also obliterated healthy cells in many cases or damaged developing brains and bodies.
Patients with leukemia may have learning difficulties because of intense therapy to the central nervous system. Patients with a tumor in the head or neck may end up with vision or hearing problems. And certain treatments that cure one cancer can trigger a second, separate cancer later.
"We need to be concerned about the quality of life during the cancer experience, and we also need to be concerned about the quality of survivorship," said Dr. Gregory Reaman, director of the Children's Oncology Group in Bethesda, Md., an organization committed to fighting pediatric cancer through advances in research and care.
He said the majority of the group's 230-member institutions have developed long-term follow-up programs, largely in the past two decades. With one out of about every 700 young adults under the age of 30 in the country a survivor of childhood cancer, program officials realized they needed services to assist them, he said.
The St. Louis Children's Hospital program began in 2001 and prides itself on its multidisciplinary approach. Cancer survivors can begin attending the clinic located on the ninth floor of the hospital two years after their cancer treatments finish.
Such patients otherwise might fall through the cracks -- too old and having made too much progress for standard pediatric cancer treatment and not actively needing cancer treatment from an oncologist for adults, who also might not specialize in the issues unique to young cancer patients.
The clinic is open to cancer survivors who received treatment at St. Louis Children's Hospital or elsewhere, with no set age requirement to attend. Those who attend can meet not only with doctors but also with a social worker and a chaplain. The clinic also links cancer survivors with resources.
For example, a mother's decreased heart function is addressed so she can better keep up with two children around the house. A teen who realizes that a lack of feeling in his legs is hindering his efforts to learn how to drive is referred for physical therapy. A young man who had a brain tumor and feels cut off from his old friends is encouraged to attend a summer camp with other cancer survivors.
The clinic also tries to teach young patients, who may have played a passive role in treatment with parents calling the shots, how to become active in caring for their own health as adults.
And it tries to help loved ones create a new reality.
"When your whole life is focused on taking care of a sick kid, that's all there is," said Diane Curry, 46, of Herrin, Ill., a family friend who looks after Jaelyn Sanders, 3. The child was diagnosed with leukemia in January 2003 and recently started working with the clinic.
Curry said it's hard not to worry about new health problems or that something may be missed if loved ones let their guard down.
"When you realize she's going to be a normal kid, you have to get back into the normal things in life."
On the Net:
St. Louis Children's Hospital: http://www.stlouischildrens.org
Children's Oncology Group: http://www.childrensoncologygroup.org