Leukemia survivor Kelly Cotter keeps up the fight against cancer

Shawn Doherty  —  10/22/2008 5:58 am

October 26, 1988. The Los Angeles Dodgers just won the World Series. Michael Dukakis is about to lose the presidential election. And in Madison, Kelly Cotter receives a bone marrow transplant from her kid brother, Adam, that she hopes will save her life. The Capital Times puts her story on the front page: "Tough hurdle for 12-year-old athlete."

A talented high jumper who dreamed of winning the Olympics one day, Kelly suddenly had no energy to work out. She had an odd rash, achy bones, and a sore throat. On April 12, 1988, she and her mom went to the doctor worrying she had mononucleosis. "Kelly, do you know what leukemia is?" the doctor asked. The next day, she was in the hospital undergoing chemotherapy. "We didn't have time for tears," her mother, Maury, recalled.

Kelly suffered from acute lymphocytic leukemia, then and now the most common of childhood cancers. In the 1960s, it was fatal. Kelly was told she had a 75 percent chance for a cure.

But in August that year, her cancer relapsed. "We'll just have to fight harder this time," her father John said.

Kelly's only hope then was a bone marrow transplant. Maury explained this to a worried 8-year-old Adam by laying out a line of 10 pennies. At first, she said, taking away two coins and leaving eight, Kelly had that much of a chance. Then Maury took away all of the pennies except for two. Now his sister had that much hope. If they could find a donor.

There is a one in four possibility that any sibling will be a tissue match. "A friend of mine who died of leukemia had four siblings, but none of them were matches," Kelly said in a recent interview. Adam was a match. Finally, the family had some good news.

"You find your pieces of hope within an overall scary picture," Kelly said. On Oct. 26, 1988, before the transplant, his mother asked her son if he was scared. Adam, dressed in hospital pajamas and cap and clutching his grey bear, laughed. "This will be the best day of my life!" he said.

And it was, says Adam, now 28. "I've had my sister since then," he said.

But the next 42 days were rough. Before the transplant, Kelly had a week of intensive chemotherapy and radiation to wipe out her leukemia cells and bone marrow. The treatment wiped out her immune system, too. She was nauseated and weak. "Her gastrointestinal system was just raw. Her lips were great big black scabs," her mom recalled. So much blood oozed out of her daughter's mouth, Maury said, "I'd go through boxes of Kleenex in hours."

Kelly was on a morphine drip. When she came to, she joked about the new perspective she gained about all the petty problems of middle school, from boys to tests to looks. "You don't have to worry about a bad hair day if your hair falls out," she said.

She coped with painful spinal taps by imagining she was on a beach. And then she coped by imagining the good she could do once she got out. She planned a dance at Orchard Ridge, her middle school, that raised $10,400 for cancer.

And her activism just went on from there. In high school, she volunteered hours of her time visiting sick children and organizing fundraisers for UW. Kelly never won her Olympic medal, but in the 20 years since her diagnosis, she has become a leading advocate for cancer research, not just locally but nationally. In 2002, she completed her law degree at UW and became director of legislative affairs for the National Childhood Cancer Foundation. Earlier this year, she helped lobby Congress to pass the Conquer Childhood Cancer Act, which will devote $150 million to research over the next five years. UW Hospital will honor her for her work over the years at an event Monday.

She has won plenty of awards and made plenty of speeches. She always talks about Adam. They check in on the phone nearly every day, and their birthday present to each other is a day together. "I feel incredibly grateful to him," she said. "He is the one person who was able to save my life." Adam has an award his sister gave him after the transplant, a plaque that reads: "Super Donor Adam Cotter. The Bravest Brother in the World."

At this point, the chance of Kelly's leukemia returning is practically zero, say her doctors. But most survivors of childhood cancers endured not just the cancer but the toxic treatments of the 1970s and 1980s, and they face a slightly elevated risk of future health problems, including infertility and secondary cancers. Kelly, who now lives with her husband in Illinois and is in the process of adopting a child, is upbeat. "It's not the quantity of time on earth that matters, but what you choose to do with it that matters," she said.

The cure rate for leukemia has steadily climbed since Kelly's diagnosis twenty years ago, and is now close to 90 percent. Strides have been made. Scientists can now use genetic markers to figure out what course a particular child's illness will take, and tailor treatment accordingly, said Dr. Ken DeSantes, oncologist and an associate professor of pediatrics at UW's School of Medicine and Public Health.

If a child with Kelly's particular biology were to be treated today, her doctors might learn earlier that her cancer would require more intensive and different therapy, and she might have be cured without needing to undergo the painful bone marrow transplant, said her doctor, Paul M. Sondel, head of the pediatric hematology and oncology unit at American Family Children's Hospital.

The world of bone marrow transplants has changed dramatically, too. Hundreds of children like Kelly faced a death sentence if they were not lucky enough to have a brother like Adam. Scientists now realize there is a one in 200 chance of finding a match in a room of strangers. And so in 1986, the first national registry for non-related bone marrow donors was established in the U.S. Last year 7.3 million donors were listed with the registry, and 3,500 of the procedures were done. The odds of surviving are almost double what they were when Kelly and Adam underwent the procedure, according to Dr. Dennis Confer, the chief medical officer for the National Marrow Donor Program.

While a bone marrow transplant is still grueling for recipients, it's a lot easier for donors. Adam was sore for several days after the procedure and still has scars -- 200 holes were drilled into his hipbone to extract a half-liter of bone marrow. Now doctors can give a donor medicine that pushes the bone marrow stem cells into the blood stream, where it can be removed painlessly within hours. And a promising new source for bone marrow donations is umbilical cord blood, which can be easily extracted from the placenta, collected, and frozen.

But all this progress isn't enough, Kelly said. For reasons scientists can't quite explain, the incidence of leukemia is actually on the rise. Cancer now strikes one out of every 300 children in the U.S. and too many of them still die. "A diagnosis of cancer for a child is just as scary and difficult to go through today as it was for me 20 years ago," Kelly said.

Shawn Doherty  —  10/22/2008 5:58 am