By 2010 -- just two years from now -- one in every 250 Americans between ages 15 and 45 will be a survivor of some form of childhood cancer. That number may seem small, but it represents big strides in battling what is the leading cause of death by disease in young people.
As more children and teenagers near the end of or complete treatment for cancers, the focus shifts from getting them cured to making their adult lives healthy and enriched. Hospitals across the country have created cancer survivorship programs geared specifically for children and adolescents.
The Center for Survivors of Childhood Cancer at Rainbow Babies & Children's Hospital started its Kids Kicking Cancer program in 2004 with a grant from the Lance Armstrong Foundation. Other services at the center include a long-term follow-up clinic and a school liaison program.
The Cleveland Clinic's High-Five Clinic at its children's hospital works with young people who are at least five years removed from an initial diagnosis and off therapy for at least two years. That program, also started in 2004, has financial backing from the Scott Hamilton CARES (Cancer Alliance for Research Education and Survivorship) Initiative.
Both hospital programs tackle the physical, mental and financial issues that come with being a young cancer survivor. The overall survival rate for childhood cancers is around 80 percent to 85 percent.
"We're at a point now where we have a better handle on the impact and significance of what a child survivor means," said Dr. John Letterio, Rainbow's chief of pediatric hematology and oncology. "We've had two, three decades to see the impact."
Rainbow's Kids Kicking Cancer has created sports clinics to promote physical activity and fitness. The first soccer clinic was held in 2006. In July, the program held its first golf skills clinic. Tennis and swimming are on the way.
It's a way for the Rainbow staff to keep connected with the families while physically preparing patients for life after treatment, Letterio said.
With gentle reminders not to run, jump or spin on the golf greens, 17 Rainbow patients took their first tentative steps on the greens a couple weeks ago.
As siblings played nearby and parents took photos, several coaches and golf pros showed the children -- all either undergoing treatment or who have completed it -- the finer points of putting and driving.
"This is an environment that's safe," said Pamela Martin of Lakewood as she kept an eye on her 6-year-old daughter Claire, diagnosed with leukemia at 2½. "She's with other children with similar issues.
"A lot of times, parents of children with cancer are afraid of putting them in the mainstream because of their immune systems," Martin said. "But it's important. All kids need to be active."
Transitioning patients back to their regular pediatricians, working with families on insurance and other financial matters, and coming to grips with long-term "late effects" of cancer treatments -- including the development of aggressive sarcomas and lower-than-normal levels of bone mineral density -- are all issues that survivorship programs continue to grapple with, said Pam Gabris, director of the National Children's Cancer Society.
In 2005, the St. Louis-based society started Beyond the Cure, which works with children 18 and under and their families. It sponsors survivorship conferences across the country and works with programs at a handful of hospitals.
Many families are so focused on their child getting better that they don't have the capacity to deal with anything beyond that, said Gabris. "You've got to constantly try to find ways to reach them."
One challenge in particular is communicating the long-term effects of radiation and chemotherapy that, short-term, are designed to keep a child alive, said Rainbow's Letterio.
Almost no one is thinking about fertility issues when a child is first diagnosed with cancer.
That's true for Rick Buzinski, who said he has not broached the issuewith his son, Christopher. The 11-year-old, who also has cerebral palsy,is being treated for an optical glioma that doctors discovered behindhis eye when he was 6. The tumor is treated withextensive chemotherapy, which Christopher received for more than ayear.
"It's kind of hard at this age, especially dealing with his special needs," Buzinski said. "But we're trying to get him to be more independent. We tell him that he can do whatever he wants to do because people will be there to help him."
The family of a girl diagnosed with Hodgkin's lymphoma at age 16 may not realize that she now has a higher risk of developing breast cancer as an adult.
A child struggling with school work may unknowingly be suffering from "chemo brain," in which the effects of chemotherapy have been shown to hinder concentration and memory.
"How do we help [families] understand the risk of therapies?" he said. "As we move forward in the future, we have to really start thinking carefully about the management of the survivor."
