A conversation with Ted Kennedy Jr.
Ted Kennedy Jr.
Few events in the Kennedy family go unnoticed, so when Edward Kennedy Jr., was diagnosed with a malignant bone tumor in his leg in the early 1970s, Americans crossed their collective fingers that 12-year-old "Teddy" would be okay.
After part of his right leg was amputated, Kennedy and his family turned to Dana-Farber Cancer Institute and Children's Hospital Boston to help prevent the cancer's spread. The boy joined a clinical trial that involved infusions of methotrexate, combined with the folic-acid vitamin leucovorin to counter the toxicity of the drug. He endured some 18 treatments under the direction of Emil Frei III, M.D., now Dana-Farber's physician-in-chief emeritus, and Norman Jaffe, M.D., currently on staff at M.D. Anderson Cancer Center in Texas.
Frei recalls that Kennedy was always accompanied by his father — U.S. Senator Edward M. Kennedy of Massachusetts — and often by his mother, Joan, and other members of the famous clan, displaying the cohesion of a family too often united around pain.
Ted Kennedy Jr. went on to college, graduate school, and law school, and today is an advocate for the civil rights of people with disabilities. He practices in Connecticut, specializing in health law and disability law, and lectures around the world about his experiences with cancer and other topics.
By participating in an early clinical trial for osteosarcoma treatment, he also helped advance research in pediatric oncology. Comments Frei, "When Ted Kennedy was treated for his tumor, his chance of being cured was in the 10 to 15 percent range. As a result of that trial and others that followed, that figure is now 60 to 70 percent."
Kennedy, the father of two young children, reflected on his ordeal during a recent conversation with Debra Ruder for Paths of Progress.
POP: What do you remember most about your treatment here in the early 1970s and the public attention focused on your health?
Kennedy: I was aware of the publicity surrounding the operation and subsequent chemotherapy. Having to go through that in a public way was hard because I was put on a pedestal as a 'brave boy' and always felt I had to keep smiling. There was a lot of pressure to succeed and to do it all with a stiff upper lip. I didn't want to let everyone down.
I remember the experience vividly. I came in every three weeks, and many of the kids in the Jimmy Fund Clinic were there full-time, for many months. I remember how grateful I felt that I had to be treated only every three weeks. Sometimes the nurses would tell me that so-and-so had died since my last visit.
There were X-ray machines revolving around the bed. Literally thousands of X-rays were taken of my body because they wanted to see whether or not the cancer had spread to other organs. And I remember Dr. Frei and Dr. Jaffe really well.
I got very sick from the chemotherapy. I was one of the first patients on that trial; they subsequently determined they could have given a lower dose to achieve the same result.
You know that CITGO sign near Fenway Park? My dad would fly up from Washington to accompany me during treatments, and as soon as I saw the sign, we'd have to pull the car over, and I would vomit on the sidewalk because I knew I was only five minutes away from the hospital. It doesn't happen to me any more when I see that sign.
It was a pretty difficult time, but I realized this was something I had to do.
POP: How has your cancer experience affected your personal and professional decisions? Is disability law a career you would have chosen had you not lost your leg to cancer?
Kennedy: Probably not, although I think I would have been involved in some sort of public-interest law because my family is oriented that way. I definitely think having cancer sensitized me to the experience of people with disabilities and led me to become a civil-rights attorney.
It sounds funny, but I'm grateful I went through the experience; it has improved my life in many ways. For example, it has given me perspective on the problems I've confronted. It has taught me to live for the moment and to be grateful for every day that I have. It's given me a greater appreciation for my family; I once had some concerns about my ability to reproduce, and today I have two wonderful children. I believe the experience has put me much more in touch with my feelings.
Twenty-five years ago, there was not much emphasis on the psychosocial aspects of having cancer. There was so much focus on getting rid of the cancer in my body, and very little on how I was doing as a person. Most cancer centers today have staff who work with patients to help maintain a positive attitude, and there are studies under way about the value of this.
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