14 Living with Cancer HealtH monitor

A longtime survivor helps sick children find a voice.

As a talented high jumper in middle school, Kelly Cotter, of Madison, Wis., had yet to face

her biggest hurdle. At the age of 11, the usually lively, athletic pre-teen became tired to the point of not being able to climb stairs. She developed swollen lymph nodes in her throat, a rash on her legs, and bone pain. Her mother took her to the doctor, thinking her daughter might have mononucleosis. The diagnosis was far more devastating.

Kelly had childhood acute lympho-

blastic leukemia (ALL). Leukemia is a cancer that involves the blood-forming tissue of the bone marrow, spleen, and lymph nodes. The bone marrow con-trols the production of all the body’s blood cells—red and white blood cells and platelets. But with leukemia, the marrow produces large numbers of abnormal, immature white blood cells (lymphoblasts), which crowd out healthy red and white blood cells and platelets. Childhood ALL is the most common form of leukemia in children and one of the most common child-hood cancers.

When Kelly was diagnosed in 1988, the chances of being cured of ALL were promising but not great—about 75%. She underwent the rigors of che-motherapy and radiation in the spring of that year. Despite the treatment,

her body was resistant to the drugs and she suffered a relapse by summer. With this relapse, her chance of a cure dropped dramatically, to just 25%.

A bone marrow transplant (BMT) was Kelly’s only hope. With the BMT Kelly had, high doses of chemotherapy and radiation are used to destroy leu-kemic cells. Since this process severely damages the bone marrow’s ability to produce blood cells, healthy bone marrow cells must be given intrave-nously from a compatible donor. This stimulates new bone marrow growth. Fortunately, Kelly’s brother Adam, then 8, was a match.

A young trouper becomes an activistBefore the transplant, the che-motherapy and radiation ripped

From CanCer Patient to Children’s CanCer advoCate

Kelly Cotter

Survivor Advocate

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into Kelly’s gastrointestinal sys-tem—her mouth and throat were raw—and destroyed her immune system. Having lost the ability to fight infections, Kelly had to stay in an isolation room for 37 days. It was quite an ordeal for a child. “We took it one day at a time, sometimes 15 minutes at a time,” says Kelly, now 32. “Like many things in life, you can’t imagine how you’d ever deal with such an illness, but when confronted with it, you find ways to cope and over-come the obstacles.”

The transplant was successful—Kelly’s body accepted Adam’s cells, which restored her ability to make new blood cells. Full recovery of her immune system took about a year. From that grueling experience came

an enduring resolve to help other children with cancer.

Extraordinarily, while Kelly was still in the hospital’s isolation room, her activism was born. Unable to talk because her mouth was so sore, she wrote ideas on a notepad for a fundraiser to benefit the Leukemia & Lymphoma Society. The event, a school dance called the Stomp-a-thon, ultimately raised $20,000.

As soon as she was well enough, Kelly started visiting other kids in the hospital who were recently diagnosed or who were undergoing treatment. “When you’re going through treat-ment, it’s hard to imagine feeling better,” she says. “When I was in the hospital, hearing from kids who were better or kids who had hair again was a light at the end of the tunnel.”

The young Good Samaritan continued her efforts at raising funds and awareness of childhood cancer issues by gradually becom-ing involved with the University of Wisconsin Children’s Hospital in Madison (now called American Family Children’s Hospital), where she had been treated. “I wanted to help kids on a broader level by doing things and using my experience to help others so they wouldn’t have to go through what I went through.”

A voice for kids with cancerIn 1993, Kelly got involved in a hospi-tal event called Kids with Courage, a five-year reunion for childhood cancer survivors. With her mother, she put together Kids with Courage, a book of survivors’ stories that’s still circulated at many children’s hospitals.

A decade later she earned a law degree. But while in college, she also started a website called Outlook (www.outlook-life.org), filled with FAQs on childhood cancer. It also includes a host of resources such as books, camps, organizations, and more.

By 2003, Kelly had become the director of legislative affairs for the CureSearch National Childhood Cancer Foundation in Bethesda, Md. While there, she was a driving force behind the Conquer Childhood Cancer Act. To get the bill passed, she met with Congress members and helped orga-nize an annual event called Reach the Day, which brought families touched by childhood cancer and health pro-fessionals together. At this event, she helped the families set up meetings with their congressional representa-tives. The result: The bill was signed last year; it grants $150 million over the next five years for research.

It is research and clinical trials, after all, that have dramatically increased the survival rate among children with can-cer. Forty to 50 years ago, the survival odds were only 10%; now almost 80% of children achieve long-term survival.

That kind of statistic keeps Kelly going. In 2004, she married scientist Bill Pappano. They live in Libertyville, Ill., and are in the process of adopt-ing a child. She now works to procure grants for the United Way, and con-tinues her activism for childhood can-cer as a member of an advisory board for the National Cancer Institute. It’s heartfelt work for Kelly—a mission, in fact. “Children don’t have a vote,” she says. “It’s important to mobilize the community to speak for those who can’t speak for themselves.”

—Ann Ferrar

Unable to talk becau

se her

mouth was so sore, she

wrote ideas on a not

epad

for a fundraiser t

o benefit

the Leukemia & Lymphoma

Society. The event, a

school dance called

the

Stomp-a-thon, ultimately

raised $20,000.

Kelly and her brother, Adam