When Becki Scott was 21 months old, she developed fever and a rash. She had acute lymphocytic leukemia and was given five days to live. That was six years ago, but as a result of chemotherapy Becki recovered. Fifteen years ago her remission would not have been possible.
It is only within the past few years that drugs have been found to combat acute lymphocytic leukemia, commonly known as childhood leukemia. Drugs have increased a child’s chances for survival from five per cent to 50 per cent, and represent a dramatic and encouraging achievement in cancer research.
In childhood leukemia there is a disorder of blood-cell production in which abnormal white blood cells accumulate in the blood and bone marrow and crowd normal cells which have difficulty growing. The new drugs have highly specific functions. Some act by
stopping cells from growing and dividing. Researchers have found that using several drugs in combination is better than using a single drug.
“We’ve been getting these kind of results for the last five years and we’ve come to expect them,” says Dr. Agnes J. Bishop, a pediatric hematologist at the Manitoba Cancer Treatment and Research Foundation in Winnipeg. “Our excitement about them, though real, is beginning to fade. Our concern is with the other 50 per cent that don’t do well.”
Bobby-Jo Geotz is a plump, cheerful three-year-old, whose brown eyes glow brightly, in what might be mistaken as a sign of robust health. But Bobby-Jo has had leukemia since the age of eight months. She has the unfortunate
distinction of being one of the youngest patients ever diagnosed in Manitoba. She has never responded well to therapy. Doctors cannot even explain how she has survived this long. Twice Bobby-Jo has hovered near death, and each time she has rallied and fought to live. She’s on a course of test drugs. To see her, and to hear her mother, Val, describe her expectations for her daughter’s life and her reasons for going on is to understand the strength and honesty that the disease exacts of its victims, if they are going to be survivors in any sense. “I believe in miracles, but I don’t think we’re going to be one of them,” says Val Geotz with a trace of sadness. “When they first told us that Bobby-Jo had leukemia we figured she’d be dead right away. But then we saw that we’d have some time. I feel that every day that we have is a gift. We try to live one day at a time. Bobby-Jo has been a guinea pig here, but I very much appreciate the fact that they would even try it. If I had to make the decision again, I’d do it the same way. These have been a great 2Vè years.” Goetz feels that as longas her small daughter is prepared to fight for her life then she is committed to backing her.
Though Dr. Bishop is concerned about not giving parents false hope, she also
feels that most people don’t know that the diagnosis of leukemia doesn’t mean an automatic death sentence. “When you tell people their child has a chance they don’t believe you. But there’s all the hope in the world. We can now get 98 to 99 per cent of children with acute lymphocytic leukemia into remission. The trick is keeping them there. When we say that the disease has a 50-percent success rate what we mean is that 50 per cent of children will not have any relapse after three to five years of treatment. Therapy can then be stopped. The other 50 per cent will relapse. Of course we don’t yet know the life expectancy of the survivors, or if they are inclined to develop other malignancies.”
Coping with leukemia itself, whatever the odds, is complicated by feelings of guilt that parents invariably experience, and by the lack of public understanding and acceptance of the disease. “You never get over the guilt,” says Carol Scott, Becki’s mother. “I still feel sometimes that I must have done something wrong. And it’s hard to treat your child normally when you feel that way.” A family with a leukemic child finds itself cut off from others, just at a time when they most need support. “Leukemia is a dirty word,” says Carol Scott. “You can’t go next door and talk about it. People are terrified. So you’re forced to be all alone. Whether or not you want it, when your child has leukemia, you belong to an exclusive club.”
In an effort to break through those barriers, therapists at the Winnipeg Children’s Centre go to schools to explain the facts of leukemia: that it is not contagious, or that a child is suddenly bald because of radiation therapy and that the hair will likely grow back: and above all, that the child must not be singled out for special treatment. On a less structured basis the members of the “exclusive club” come to depend on each other. When I hear of a kid who’s making it, it makes me feel terrific,” says Val Geotz.” “It’s part of my success too. We’re all in this together.”
The future research of childhood leukemia has clear direction. “We’re just now able to predict at the time of diagnosis which kids will do well and which won’t,” says Dr. Bishop. “So hopefully in the next five years we’ll be able to be more selective in our methods by beefing up the treatment of high-risk patients, while at the same time giving less therapy to low-risk patients and thereby saving them some toxicity.” While Becki Scott smiles warmly for cameras that eagerly want to portray her as a success story, her mother remains cautious. “Becki’s disease is under control—not cured,” she says. “Cured means a promise. We’re still waiting for that one.” Brenda Rabkin
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