The Little Knights Read online

when children afflicted with cancer almost invariably died. It was heartbreaking to read a letter to a country doctor who had sent a 2 year old child to Radiumhemmet (University Cancer Center in Stockholm) in 1935, with a large tumor in the abdomen. Professor Berven, a big name in oncology and a pioneer of radiation therapy, wrote this: »I am sorry to inform you that we are not going to treat your patient, since we cannot help him. Any attempt to treat would only prolong his suffering and that of his poor parents. «This point of view had long been prevailing and is still encounered here and there also in my country. But, more gutsy doctors decided to operate, or to irradiate, or both, and sometimes succeded. Those cases were reported in medical journals and so it began. Also, there were more and more children with cancer – they did not die from infectious diseases any more. The challenge was here, but there were still too few cures. Surgery and radiation have not solved most problems with cancer. It rapidly spreads through the blood to grow into vital organs like the lungs. This kills the child. Solution to this came in the 70's with the advent of chemotherapy. With this we could fight malignant cells anywhere within the body before the child's life was in jeopardy. Influenced by the fear for our little patients' lives and by their high mortality in the recent past, we« went all out«.

  Surgery was performed whenever possible, followed by radiation and chemotherapy in most cases. The number of survivors grew dramatically. Naturally, all these »big guns«, used up to the limits of the child's tolerance, did a lot of good but also caused some damage.

  What followed was a new era of learning: we became aware of the fact that cure alone is not enough. The question was how to use all these treatments available in a rational way, without danger to patients' lives and with as little damage as possible. By analysis of our work through the last decades we were able to define groups of patients with milder forms of disease, who could be treated less aggresively. We also found out that equal results could be achieved with a more thoughtful combination of surgery, chemo- and radiotherapy. The results are here. The number of cured patients is still rising, even if not as fast as in the beginning in the 70s. We are learning how to limit the damage inflicted by treatment and we all are learning how to co-operate: surgeons, radiation and chemo-therapists. In this respect we still have considerable problems here in Slovenia.

  Sidney Farber, the famous pediatric oncologist was among the first to introduce chemotherapy in children with various forms of cancer. His first results were extraordinary and we were all happy. He said: «The secret of success lies in the reception of a child with cancer in our institution. The child is met immediately by all the experts needed in his case and their mutual cooperation is exemplary«. I try to repeat these words from time to time. You will always find somebody, who thinks, he knows it all and has to be reminded that this just is not so. Otherwise he will be reminded by an unwelcome consequence of his unfounded prejudice.

  These days it is possible and sometimes necessary to co-operate with fellow doctors abroad. This is quite obvious to us in a small country, but should be apparent in big countries as well. We learn different things from each other. Even a small country may find opportunities that a big country does not have. People in America travel, and move around a lot; documents get lost or are unavailable. We Slovenes mostly stay at home, or return home, and we know each other. We have a Cancer Registry since 1950 contaning all patients afflicted with cancer. It is the envy of many others in Europe and even America. We know all Slovenian children with cancer and how they are doing. In most countries only certan groups of patients are known and followed. Others can therefore learn something from us.

  Late effects, somatic and emotional, of childhood cancer and its treatment, are slowly being recognized. We would like to transmit what we have learned to medical students, our future doctors, but meet with deaf ears and limited possibilities. We are trying the long way through personal contacts, to inform family doctors about their former patients. Some teachers in foreign medical schools bring former (childhood) cancer patients before their medical students of similar age, to talk about their experience and emotional reactions.

  A thorny path, a flower aside, such is my spring.

  On this path a sigh: nobody likes me!

  (Cvetka Glazer, 2002)

  How do we treat children with cancer today?

  In Slovenia, about one third of the children with cancer have leukemia (blood cancer) and lymphoma (cancer of lymph glands) one third have brain tumors and one third other solid tumors such as sarcomas growing from other tissues – bone, muscle connective tissue, kidneys etc.

  The results of childhood cancer treatment have greatly improved mainly due to chemotherapy and to the fact that we have learned a lot during the last decades. Only one out of four children survived over 30 years ago while at the present about three quarters are cured. Cure is our main but not our only goal. We have to consider the quality of life of the youngster, who has still most of his life before him. It is therefore important to know which child with early stage cancer can be treated less aggressively and in which one the disease has advanced to the point that we have to use all possible means even at the risk of later complications in order to save his life.

  I am not going into details of treatment modalities, but shall give case histories that exemplify the main features of the three main methods that are used separately or in combination, as experienced by our little patient.

  Surgery,

  is the oldest modality, radiation and chemotherapy having joined later. Surgery alone is sometimes successful, mainly with brain tumors. However, in many other forms of cancer surgery is an essential part of treatment. Certainly we are all more or less afraid of a surgical operation, even if we expect at least the relief of unbearable pain. However, how does a child cope with a procedure that physically changes his whole life such as the amputation of a leg? Sometimes a child does not understand, how it is possible to take from him something that« belongs to me«. Or losing an eye? How does a child accept such facts together with the fact that he is still alive?

  MIRKO was 5 when treated for a tumor in his right eye socket The eye was removed and the socket irradiated. The disease did not recur. At the age of 16 I invited him and he came to the Institute with his father. He looked small, frail and rather helpless. Healthy but with markedly asymetric face due to delayed bone growth after irradiation of his right cheek. In high school he did poorly in math. For a while during our interwiew there were no answers to my questions. After a while I noticed a tear in his eye. Then he opened up a bit. He was quite unhappy about the loss of an eye and did not want to talk about the time of his therapy. «I do not remember anything and if I did it would be of no interest«. Asked what troubles him most, he answers »the loss of eyesight«. Yet he obviously sees, goes to school, to gymnastics, is a skier. «This forces me to sit in the first row in the school«. Discussing possible plastic surgery and an eye prosthesis he says: «How does that help? I shall not see and plastics are plastics. «He repeats this several times, always maintaining, that he does not see. When I turn away a bit, he is very interested in his medical chart, asks why he received radiation. I explain. He also refuses possible treatment with growth hormone while there is still time as he is still growing. He says that indeed he was the smallest in his class, but that by now he is the fifth from the tail. Meaning: I am growing and I don't need any help. In spite of all this, there is a friendly good-by and he seems in a slightly better mood. Perhaps I have instilled in him some hope that we can help him. My hope is that we can. Our psychologist, who saw him a month later, wrote (among other things): «His emotional life is suppressed in a depressive manner«.

  The boy let several years pass before seeing me again. However, he consulted a plastic surgeon on my intervention, found out that a lot can be achieved with effort and patience, but decided surgery makes no sense, since his eyesight cannot be restored. In the meantime he graduated from a high school for electrotechnics and is pleased with the achieveme
nt. However, he does not look forward to a job which he will have to take eventually.

  Again some years passed without Mirko showing up. His father kept in touch with me and was as always of great support. It was now over 10 years since Mirko's operation. He had consulted several plastic surgeons in Slovenia and abroad, with our help and received similar opinions. He took a job and is surprisingly, happy with it. After another several years without showing up at the Institute, I met him at one of our charity concerts. At least he is not angry with me. He has sent me photos from his marriage, dancing with his young bride. He still wears a plaster where his eye used to be, but he is content, and also has a baby. He did not accept our help because he really did not need it. What we doctors could not do, his young, loving wife accomplished easily: she made him happy.

  Radiation,

  often follows surgery, when the surgeon could not remove the tumor with a safe margin. Some cancerous cells may have been left behind and radiation is used take care of them.

  Children are usually less afraid of radiation than grown-ups. Yet the anxiety of the parents reflects on them. We explain