Paths of Progress, Winter/Spring 2004
Each morning for years when I came to work, I'd walk by the Jimmy Fund Clinic en route to my lab. Peeking inside, I always wondered how doctors and parents there could handle the challenge of helping children with cancer. Then I went from being a Dana-Farber professor to a consumer of its health-care services overnight, and I stopped wondering.
Wayne Marasco's research focuses on infectious diseases.
It was a Wednesday afternoon when we got a call from Madi's daycare center that she was being sent home with a low-grade fever. A trip to the pediatrician the next morning confirmed that she had strep throat, and despite penicillin and Tylenol, her fever continued to worsen. By midday on Friday, it was 102 degrees, and Madi couldn't move one shoulder. My wife, Jeny, took her to the emergency room at Children's, and when I was done seeing my last Dana-Farber patient at Brigham and Women's Hospital around 8 p.m., I walked next door to join them — still dressed in my white lab coat.
When the attending physician gave us Madi's platelet and white blood cell counts, I knew she had cancer even before he could say it. Although the majority of my research is on AIDS, I deal with mostly cancer patients in my clinical practice and can recognize the signs. Telling Jeny that our daughter had leukemia was a frightening moment, and I couldn't believe it was happening. There was no history of cancer in either of our families, and on Tuesday Madi had been bouncing around like everything was fine. Now I was wondering if we'd see her grow up.
"Watching this young child manage a very difficult situation, I learned a great deal from her."
Wayne Marasco, speaking about his daughter
Jeny stayed with Madi at the hospital that night, but I had to take our oldest daughter, Mariah, home. At about 3 a.m., as I was pulling out of the Children's parking lot with her asleep in the back, I got a call from Dr. David E. Fisher. He was the Dana-Farber attending physician on call, and he told me, 'We're going to take excellent care of her, things look good, we can cure this disease.' That conversation gave me comfort in the middle of the night and was a far cry from the despair I had experienced an hour earlier.
The next day was the worst. It turned out Madi also had developed a staphylococcal blood infection in her shoulder, probably as a complication of her leukemia, that was contributing to her acute illness. I called in the infectious disease consult team, people with whom I work all the time, and helped them get things under control so she could receive her initial chemotherapy. Once this crisis had passed, I let the cancer experts take over and was there for Madi as an advocate and a dad — but not as her doctor. I knew she was in great hands.
Wayne and Madi Marasco enjoyed the 2002 Jimmy Fund Walk with event Director Emily Quinn
Sunday morning, Jeny and I sat down with David Fisher and Dr. John D'Orazio and had to make our first decision as the parents of a child with cancer: whether or not to put Madi on an experimental clinical protocol involving a combination of drugs given to attack cancerous cells. 'We're making a lot of progress in treating ALL,' they told us, 'but kids still die. We want to do better.' It was then I understood how fortunate we were to be at an institution that not only treats cancer, but also offers state-of-the-art clinical trials. This concept of taking the best standard of care and attempting to improve it gave us tremendous confidence, and we said yes.
You need to have faith in your doctors, and her clinical oncologists — Drs. Jenny Mack and Lewis Silverman — were available for any questions we had about Madi's physical growth, cognitive development, and general well-being. Pat Dwyer, her social worker, and Amy Piselli, her primary nurse, were also terrific. We all worked together as a team, which gave me tremendous peace of mind.
After staying at Children's Hospital for about a month, Madi continued her protocol as an outpatient at the Jimmy Fund Clinic for two years. Watching this young child manage a very difficult situation, I learned a great deal from her. It takes a strong individual with fortitude and drive to move forward, and her way of thinking was, 'If you're going to put me in this scary situation, I'm going to be in charge.' She needed to watch everything that was done to her — and even learned to push [or inject] her own chemotherapy.
