Right Now: Dr. Joanne Kurtzberg '72 on teenagers, cancer, and the value of the present moment

As told to Suzanne Walters Gray MFA '04

We treat children with various types of cancer, sickle-cell anemia, and certain genetic diseases like the “bubble boy” syndrome, where your immune system doesn’t work. All of these can be corrected by giving the child cells from another person. The transplant procedure is very complicated and involves several months in the hospital and a risk of death.

Some families, particularly those of children with cancer, already are very savvy and know a lot about their child’s disease and treatments. But they’ve already gone through the standard treatments and failed, so when the family comes here, they’re much more anxious. They know that if what we do doesn’t work, they’re going to lose their child.

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This was a kid who came to us from California, who had leukemia and was diagnosed when he was 8 or 9 years old. He was treated, but he relapsed. In childhood leukemia, when a child relapses, the chance he’ll be cured with conventional therapy is zero.

So they came here for him to have a transplant. This was six years ago. When I first met him, he was on chemotherapy and was bald, and he had chubby cheeks and a big belly, which is something that comes from the medication. He’s a very analytical kid, and he would look things up and do his own research. I really think he derived comfort from knowledge. He’s an only child, and his parents had a lot of respect for his opinion and his decisions, and he was included in the entire decision-making process. We made a contract with him, verbally, that we would always be honest with him, we would tell him when we were worried or not.

We did a bone marrow transplant, and he was okay initially. But he developed a complication called graft vs. host disease, which is when the donor cells attack the patient. That complication can be fatal in 60 percent of patients. He was disappointed, he was scared. This occurred after he was initially discharged from the hospital—a milestone all the kids look forward to—and although quite frequently kids have to come back, it is always seen as a setback. He was 11 years old.

The graft vs. host disease didn’t respond to the conventional treatments, but we were doing a clinical trial with a new kind of stem cell, and we treated him as the first child on that trial, and he responded.

It took him a couple of years to get better after the transplant, but during that time, he got to go back to school here in Durham, which was really the first time since he was in second grade that he was able to finish a year of school without getting sick. He just wanted to be normal, and he was thrilled when he went back to school. His family decided to stay in Durham so he could finish middle school and high school here. He was in band, the debate club, and the student government.

He just graduated, was salutatorian of his class, and he’s going to Harvard now. For the last two years he’s been healthy, off all medications. He’s a mature, thoughtful, well-organized, outgoing kid. Short, brown hair, wears glasses. If you met him in the street, you’d think he looked like a normal, semi-studious kid. You wouldn’t know that he had had a transplant.

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I guess the thing that keeps me going is that I know even if these kids don’t make it, we’ve helped them and their families. It’s almost more important to help them when their child’s dying, to help them get through it in a way that they can go on, that they know that they did what they could, and even if it didn’t work, they have some closure so they can go on with their lives.

I had a student in clinic last week who is a college freshman. We saw a couple of kids with a lot of problems and a couple of kids who were doing great. The student turned to me and said, “It’s good to know you help some people.” I said, “We help the people who aren’t doing well, too—it’s just a different kind of help.”

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The teenagers, that’s the hardest time of life to be sick and have to be dependent on people. They’re trying to break away and be independent. That’s when you get into compliance problems. Some teenagers don’t want to take their medicine. It can be the hardest age to treat because they’re angry, they think it’s not fair, they don’t want any restrictions on their life. They come here and can’t go to school with their friends. That’s very hard.

Kids have boyfriends or girlfriends who come to visit. One of my patients’ boyfriends would come every day, and we’d figure out a way that they could sit together in the bed and watch a movie without contaminating her with anything he might bring in.

When kids are first released back to their real home after a transplant, they have certain isolation rules they have to follow, and one of them is that they can’t kiss people—it transmits germs. Several months after he went home, this one kid who was 12 or 13 e-mails me, “Dear Dr. K, can I kiss my girlfriend?” I didn’t answer him right away because I was busy, and 20 minutes later he e-mails back: “Dr. K, I have to know right now.”

He was far enough out that it was okay.

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Kids with cancer and potentially fatal illness can have a much more mature idea of the value of life than typical children. The kids who are the nicest, the wisest, are the ones who have the highest risk of not doing well—everybody who works in the field says that.

The main thing they learn is to live in the moment and value each day, rather than living for something in the future. They learn to appreciate daily things in life they may have been restricted from—being able to go outside, go to school, not worry about a fever. Something like going to a movie, or having a friend over, or going on vacation, or having a birthday party—those things become much more important to them.

They learn to not sweat the small stuff. In a teenager, it will come across because they’ll tell you that a friend is upset about a teacher or a boyfriend or who wore what dress, and they’ll say, “That’s just so silly, there’s no reason to be upset about that”— because they realize there are bigger things at stake.

I think this philosophy never leaves them, but the further out they get from their illness, the more removed they are from that position. And in a way, we view that as healthy, because they’re getting back to a normal worry level. A lot of people tell us, finally this year, I actually didn’t think about this or that—I was more worried about something trivial. We consider that a healthy sign.

Dr. Joanne Kurtzberg ’72 is the director of the Pediatric Blood and Marrow Transplant Program at Duke University Medical Center, the world’s largest program of its kind, where more than 2,000 children with blood and metabolic disorders, cancer, and immune deficiencies have received lifesaving stem-cell transplants over the last 30 years. She is also the Jerome Harris Distinguished Professor of Pediatrics and Professor of Pathology at Duke University Medical Center.