I too could talk like you,
were your soul in the plight of mine.
But have I the strength to go on waiting?
What use is life to me, when doomed to certain death?
The considerations that apply to the treatment of cancer in adults are not quite the same as those in children. Children are not just small adults; there are many qualitative differences that justify considering them separately. Children have a different time scale. What would be a few days in bed for an adult is an eternity for a child. Since they do not have enough information to be able to make rational decisions for themselves, decisions are made for them by their parents and physicians. An adult cancer patient at age 75 may say, "I have lived my life and my time has come, and I intend to go out gracefully." The child can neither say nor think this. By all standards, his life should just be beginning. No one can view the passing of a child with equanimity, as we sometimes can the passing of an old adult.
I talked to a hematologist with long and extensive experience in the treatment of leukemia in children. He told me that, in all of his years of practice, no one has ever refused treatment for a child; even in the days when the treatment was almost totally ineffective. I have personally seen the parents of children with leukemia fleeced of every bit of savings that they had, by an unscrupulous cancer quack. This one was an M.D. who injected children with extracts of pineal gland that were so alkaline as to constitute the injection of a lye solution.
The parade of parents with ill children to shrines in the hopes of miraculous cures is a pathetic spectacle.
If I were writing this chapter thirty years ago, I think that I could have presented a very powerful argument for parents of children with leukemia to say to their doctor, "I want no treatment for my child except that which might make him more comfortable." I can't say that now, because there is little question that chemical treatments for acute leukemia and for Burkitt's lymphoma can be effective. Many children's lives have been extended to over five years after the start of treatment. For the majority who do not make it, it was a valiant, but worthless effort. For the few who do make it, it is the mixed blessing of life with the sword of Damocles hanging by a hair over their heads. I have no answers. I rejoice in the victories! I also know that there is very little in this world that is all good, and the announcement of a number of children who are still free of leukemia five years after having been treated, while a wonderful thing to those who are cured, cannot help but make the disappointment greater for the parents of the thousands of children who will be deprived of the benefits of living by leukemia, in spite of everything that their doctors can do. I cannot say, as has been implied many times in the press, "Rejoice, parents of leukemic children --the cure has come!"
My experience with the experimental chemotherapy of leukemia is limited to what I have seen and heard. I have not had a child with leukemia, nor have I ever been involved in treatment. I recently heard a talk by a well-known experimental therapist from Europe who described what he was doing in an attempt to "cure" leukemic children. I found it frightening. Based on experiments which, from a scientist's point of view, are of questionable value, he has injected truly therapeutic drugs into children with leukemia and also injected cells which not only attack the tumor cells, but the normal cells of the patient. The tumors occasionally disappear, but the patients die of the effects of the treatment. His apparent lack of sensitivity to the feeling of his patients was obvious in the way that he talked, and in the material that he presented.
Fortunately, I did not stop there, but talked to people in hospitals in this country. I found that, contrary to my expectations, the welfare of the patient is placed first, and only if his welfare is not jeopardized are experimental treatments used. I was Impressed with the dedication and the fundamental kindness of the people involved in treating leukemia and the fact that most of the treatments are performed on an outpatient basis, with the children being able to lead relatively normal lives during the periods when their disease is kept in check with chemicals. I could find no fault with this approach to the problem of treating leukemia in children, and the argument about the conflict between patient care and scientific method (lack of untreated controls) is one which is extremely difficult to resolve. I would not wish it resolved at the expense of the children.
What are the odds of survival in children (under 20 years of age) who develop acute lymphocytic leukemia? How long can we expect these children to survive, given the best treatment possible? (At the present time, it's largely the chemical treatment procedure that was started in 1966.) Survival has continually increased since 1960, and a comparison of the odds would look something like this: The chance of a child surviving twelve months after the diagnosis has been made was such that 40 out of 100 would have done so before 1960. From 1966 on, one could expect 80 out of 100 to live for over a year. Only 6 of 100 children would have survived to two years before 1960, and now 55 out of 100 will go that long.
I have been informed that there are more than 160 people who have had acute leukemia have survived for over five years. I don't know what the odds are, because I don't know the size of the sample. It is a considerable number and, for the first time in history, some guarded optimism is justifiable.
With regard to the other forms of leukemia (acute myelocytic leukemia and the chronic leukemia), the effect of treatment on the outcome of the disease has been negligible. If a person is diagnosed as having acute myelocytic leukemia, one out of five people will make it to 12 months, about one out of ten to 24 months, and one out of twenty to 36 months.
The real tragedy is that the ill child is a "sure thing" for the con man. If an unscrupulous operator wishes to extract money from people, the foolproof way is to tell him that his money might help a sick or dying child. Fortunately, these unscrupulous con men are rare. But one such con man is one too many.
Stories often appear in the newspapers which tout a "new cure for leukemia." These stories invariably appear just before some organization is about to start a campaign for funds. The stories are a gold mine to the organization. The amount of suffering that these stories cause to the families of children with leukemia is immeasurable. Every time that such a story appears, doctors are deluged with phone calls and letters wanting to know about the "new cure. The heartbreak when these people are told that "it is nothing new" or "it really hasn't been tested" or "that is the treatment that your child is getting" is hard to estimate. It is considerable, totally unnecessary, and brutal. The fact that this act is done by people who are apparently unaware of the consequences does not excuse it. Newspapers and magazines could perform an act of human kindness by refusing to print press releases which contain reports of "cures" and "breakthroughs" unless they have been independently checked for authenticity. At the present rate, this would mean only one such report every five years, not several each year.