Kelly’s Story

Thirty-one years ago, Kelly was an energetic, athletic 11-year-old sixth grader from Madison. Suddenly, an onset of swollen lymph nodes and exhaustion had her mother, Maury, thinking that mononucleosis might be the culprit. The truth, however, was something that turned the Cotters’ world upside down: cancer, or more specifically acute lymphoblastic leukemia (ALL).

As scary as the news was, Kelly’s chances of survival took a sharp drop (from about 75 percent to 25 percent) once her leukemia quickly relapsed late that summer, just four months after her original diagnosis. “We are just going to have fight harder this time,” said Kelly’s dad, John, as the family left the old UW Children’s Hospital after learning the unsettling news.

Her best chance for survival was to undergo an invasive procedure known as a bone marrow transplant, a form of treatment that could only work if she had a matching sibling. It was only a one-in-four chance, but Kelly’s brother, Adam (then 8, now 39), was a perfect match and agreed to be his sister’s bone marrow donor. Doctors would need to extract marrow more than 200 times from the back of Adam’s hipbones.

On October 26, 1988, the morning of the transplant, Adam – holding his favorite teddy bear while still in his pajamas – was approached by his mother.

“Adam, are you scared?” said Maury.

“No, Mom,” her son replied. “This is the best day of my life.”

In time, Kelly’s bone marrow transplant was deemed successful. Now 43, Kelly lives in Libertyville, Illinois, with her husband of 15 years, Bill Pappano, a research scientist, and their sons Enzo, 10 and Teo, 8.

Kelly’s unassuming, modest manner belies her undying commitment to helping others. No one could have predicted how this magnanimity would blossom over 30 years, but consider the first clue: a 7th-grade assignment asking Kelly to put on paper some thoughts about her cancer experience. “One day,” Kelly wrote at age 11, “I would like to raise millions, or I guess I’d settle for thousands, of dollars for childhood cancer research.”

Little did she know, how prophetic this wish would become. Even before her hair grew back following treatment, Kelly began to execute her plan, while still in the hospital. Step one was the “Stomp-a-thon” – a school dance she organized that raised $20,000 over two years for leukemia research. Kathryn Murphy, a fellow childhood leukemia survivor currently employed by American Family Children’s Hospital as a patient-family liaison, recalls meeting Kelly at the Stomp-a-thon.

“I was only 8 at the time, but I remember feeling so inspired by what Kelly did that I organized my own fundraising carnival that we put on for 10 years,” Kathryn said.

By 1993 at age 16, Kelly co-founded Kids With Courage, an incredibly impactful reunion of childhood cancer survivors and their families that takes place every five years. The event attracts nearly 1,000 people, including supermodel Cindy Crawford, whose little brother, Jeffrey, was treated at the UW before dying of leukemia at age 3 in 1975.

A Kids With Courage book, co-authored by Kelly and Maury, became a treasured resource for kids and families at children’s hospitals around the nation.

While a University of Wisconsin-Madison undergraduate, Kelly developed one of the very first information resource websites designed exclusively to address the long-term issues for childhood cancer patients and their families following treatment. Called Outlook, the site was prominently recognized by the National Cancer Institute and supported financially by several UW Health entities.

By 2003, following graduation from the UW Law School, Kelly moved to Washington, D.C., to lobby for more pediatric cancer research funds as Director of Legislative Affairs for CureSearch for Children’s Cancer. There, she helped secure $8 million in federal childhood cancer research support and successfully pushed for the Conquer Childhood Cancer Act of 2006.

By 2008, Kelly and her husband Bill moved back to the Midwest, where she currently works as a grant writer for the United Way of Lake County in suburban Chicago. There, she began to fulfill one of her greatest personal aspirations – parenthood.

“I knew from the time of my transplant that infertility was a potential side effect,” Kelly said. “So, when Bill and I decided to have a family, we began exploring adoption. With the help of an adoption agency in Chicago, we found both Enzo and Teo, and they have given me the most meaningful role of a lifetime – being a mom.”

Paul Sondel, MD, PhD, head of pediatric hematology/oncology at UW Health’s American Family Children’s Hospital, says that giving back, whether as a mother or advocate for childhood cancer patients and research, is truly a lifetime commitment for Kelly.

“The instant connection Kelly makes with kids and other cancer survivors is so impactful,” said Dr. Sondel, who was Kelly’s pediatric oncologist during the late 1980s and today serves with Kelly on the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, a nationwide research consortium involving the use of immunotherapy to treat childhood cancer.

My youngest, Mateo, is now the same age that my brother was when he was my donor. And, my oldest, Enzo, is nearing the age I was when I was diagnosed. Seeing the pediatric cancer experience now through my perspective as a parent, gives me the continued motivation to stay involved and help make a difference for other children.

Kelly’s success in the fight against childhood cancer, Sondel says, may be explained not only by her personal story, but her personal style.

“Kelly has a very gentle, yet persistent way that can be very persuasive,” Sondel said. “She is so gifted at attracting attention for this cause without making it about herself personally.”

Reflecting on the 30 plus years since her daughter’s life-saving bone marrow transplant, Kelly’s mom, Maury, glistens in appreciation of the life-cycle milestones that have occurred since Kelly was cured.

“I cherish them all – high school, college, law school, her success in Washington lobbying for pediatric cancer research, marriage, and now children,” said Maury. “These would make any mom very proud, but I especially relish those who say that Kelly helps them get through the hardest of times. In her quiet way, Kelly’s empathy and wisdom have made such a difference to so many who have faced so much.”

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