Clinic Provides Support, Help for Childhood Cancer Survivors

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Caring for Life Clinic

Pediatric Hematology and Oncology

American Family Children's Hospital

Helping Childhood Cancer Survivors
Learn why long-term care is important for childhood cancer survivors and how the Caring for Life clinic helps former patients take charge of their health.
kids in circle; American Family Children's Hospital's Caring for Life Clinic provides support and help for childhood cancer survivorsMADISON – An amazing thing is happening to children with cancer: more than 80 percent are surviving, due to advances in research and treatment. That's a significant change from the mid-1970s, when the prognosis wasn't nearly as good.

"When I began my career in the mid-70s working with pediatric cancer patients," said Peggy Possin, RN, Caring for Life Clinic coordinator at American Family Children's Hospital, "survival rates were only around 40 percent. It's a wonderful feeling to be a part of all the progress. Now, we're focused on how we can make sure it's 100 percent with the least amount of long-term effects."

The Centers for Disease Control (CDC) estimates that more than 12,000 children are diagnosed with cancer each year, with more than 270,000 childhood cancer survivors currently living in the U.S. It is estimated by 2010, one in 250 children will be a survivor of childhood cancer.

With the increasing number of survivors, and survivors living longer, a critical need is emerging to help these patients with long-term issues that can develop. That's where the Caring for Life Clinic at American Family Children's Hospital comes into the picture.
Surviving Has its Challenges

The Caring for Life Clinic began in 1989 in response to the number of childhood cancer survivors and the long-term health and psychological issues that were beginning to be identified. It was the first program of its kind in the state of Wisconsin.

"The long-term issues that childhood cancer survivors face are varied and based on a number of factors," explained Possin, "including what disease a child had, the type of treatment received, even age at the time of treatment. And the effects may not be important to the child for years; for example, some childhood cancer survivors may face issues of infertility that aren't relevant until they decide to start a family. Younger children may face learning challenges in school."

Possin points to the long-term issues as the reason that it is critical patients continue to receive follow-up care. Through the Caring for Life Clinic patients have a place where they can learn about long-term effects; they have providers who are aware of the types of therapy they received and the potential lasting impact; and their health can be monitored.

"Some patients, ones who were sick as small children or in infancy, may not even remember their treatment or experience. We educate patients about their health history, so they can advocate for themselves in the adult health care setting." said Possin.
Becoming their own Advocate

When a child completes therapy, there is a window of time during which they are monitored for any signs of the disease reoccurring. Once past the window, and as the child grows, the efforts change from surveillance to preparation – helping the child make a transition into the adult-care world.

"For many childhood cancer survivors, you wouldn't even know they had been sick," said Possin. "There might not be any obvious physical scars that would suggest the challenges they faced in the past."

That's why one of the clinic's goals is to help patients become their own advocates and ensure they are receiving adequate and proper care throughout their lives, whether it's medical care, educational needs, or understanding why maintaining a healthy lifestyle is so important. But it's a goal that presents some challenges for parents.

"Throughout the child's illness the parents have been so critically involved, giving medications, coordinating appointments, providing the connection with the school system, caring for their child, sometimes fighting for the care their child needs, and negotiating insurance. It must be exhausting," explained Possin, adding, "and it makes it very hard for parents to let go, and let their child take over when appropriate, no matter the age."

The clinic staff works hard to help parents feel comfortable that their child is indeed prepared to make the transition into that adult world.

"There's no way we can prepare patients for everything they'll face in the world," Possin concluded, "but through extensive education, resources and a supportive environment, we hope they'll be able to handle the challenges that may come their way."

The Caring for Life Clinic is held two Wednesdays each month from 8-11am in American Family Children's Hospital. It is staffed by Diane Puccetti, MD, medical director, Sharon Frierdich PNP, as well as Possin.

Date Published: 07/09/2009

News tag(s):  pediatric cancerchildrendiane m puccettisharon a frierdich

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