Edward Kennedy Jr.
A conversation with 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 Paths of Progress Magazine (POP), Dana-Farber's general interest magazine published twice a year.
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.
POP: Your father has said that many of his political views have been shaped by personal experience. Taking the cancer journey with you, for instance, helped inspire him to spearhead the Family and Medical Leave Act. What are some of the political issues facing cancer patients today?
Kennedy: I encourage people to talk about their experiences and to get involved around policy issues that surround cancer, such as the proposed patients' bill of rights, which would provide appeal rights if, for example, someone's health maintenance organization did not want to pay for an experimental treatment. Every year, there are people in Washington who advocate taking money from the National Cancer Institute because they don't think the government should be sponsoring research. Privacy in medical records and protection of genetic information - these are huge issues for cancer patients.
This past fall the U.S. Supreme Court heard a case, Garrett vs. University of Alabama, involving a nurse at the university who was diagnosed with breast cancer, had a lumpectomy, and was supposedly discharged from her job and told that "we don't want sick people taking care of our patients." She claimed discrimination under the Americans with Disabilities Act.
These things happen. So I try to gently remind people - without being overly political - that it's important to become more informed. Because even if you're cured, you still have a medical history that can affect your employment, your health insurance, and your life insurance.
POP: Do you handle cases involving cancer patients? Is cancer considered a disability under the law?
Kennedy: That depends on whether the cancer interferes with a major life activity like walking or breathing. The Americans with Disabilities Act (ADA) also protects people who are regarded as having a disability. A lot of cancer patients have used that prong of the ADA, claiming that, although their cancer did not disable them mentally or physically, their employer treated them as if it did.
About half of my practice is health law, and the rest is disability law. I deal primarily with public accommodations cases; that is, situations where people are denied access to a public place, such as a deaf person who needs a sign-language interpreter to see a doctor.
POP: Dr. Frei recalls the remarkable closeness of you and your father during your treatment. What did it mean to have him by your side?
Kennedy: As a parent now, I can understand how having a child diagnosed with a life-threatening disease can be traumatic. It created a bond between us that has lasted to this day. He was willing to put everything aside and care for me; he literally held my head and the basin while I vomited. That's what parents are for, really, no matter who you are. And it wasn't just for me; I've seen him go out of his way for so many members of our family.
He also worked hard to research all my treatment options. This was before the days of the Internet, when you can go online and search for different clinical trials. Thankfully, now you don't have to be Senator Kennedy to be able to access a lot of this information. People today can use the World Wide Web to make decisions more quickly, find the best physicians, learn the pros and cons of treatment options, and be more involved in their care.
POP: Shortly after you completed your trial, scientists found ways to treat your kind of cancer without amputation. What's your perception of the progress that has been made in tackling cancer, including yours?
Kennedy: We've made huge strides. For example, in the early 1960s, most children with acute lymphocytic leukemia died; now, 80 percent of them live [at least five more years]. We can detect cancer earlier, which helps with outcomes, and there are many new treatments being researched. We've got the best technology and brains, and I'm very encouraged.
But, as I said earlier, it takes the public to support [legislators] who are willing to continue federal funding for these programs - and to push for change. For example, not that long ago, little research was done on women's cancers, such as ovarian and breast cancer. The breast cancer survivors in this country mobilized in an unbelievable way, and they were able, with good old-fashioned political influence, to make a huge difference in promoting research and treatment options. The same is true for prostate cancer [which is one of the most common types found in American men, and is fatal for more than 30,000 annually]. Nobody discussed it five or 10 years ago, and now men are talking about it, and I think that's great.
In my case, I don't regret for one minute that the current limb-salvage technology was not available when I had cancer because it's not foolproof. People do end up with their leg, but the mobility of the limb, I would argue, is not nearly as good as an artificial one. I couldn't ski the way I do, for example, if my leg had been spared.
For some, limb salvage is a great option. But people go through Herculean efforts to try to save a leg when, I think in many cases, they would be much better off going for the amputation. It's not the end of the world to lose a leg.
(Paths of Progress, Winter/Spring 2001)

