The Little Knights

and at the Institute of Oncology. The members of the team – surgeons, pediatric oncologists, radiation oncologists and others meet at least once a week, plan the treatment of each new patient and evaluate the treatment results together. Chemotherapy is administered at the childrens´ hospital, radiation at the Institute of Oncology, where certain surgery is also being performed (some also across the street, at the University Hospital). During the treatment and up to their 16th year the patients are followed at the pediatric clinic, but later at the clinic for late effects of childhood cancer and treatment at the Insitute. Thus, we are at this time following over 700 of these former patients and the number, of course, is increasing.

  The research project »Late effects of childhood cancer treatment« has been, since 1992, financed by our Ministry of Science. It was thus possible to employ four young researchers, first one and later, when the research was in progress, three more. Three are medical doctors, one a clinical psychologist. With serious dedication they started working in this rather new field and soon began to make contributions to the well-being of their patients, through new findings and observations. Up tol now, this program has produced three masters and four doctoral theses (and degrees). We know better now how to treat our patients and avoid as much as possible iatrogen »collateral damage«. For those who were treated before, we can better cope with the damage already done.

  Our »model« for this kind of continuous care was among the world´s first. It helped that Slovenia is a small country, that we closely co-operate, that all patients are in the registry and could be invited to continue their follow-up. It also helped, that our young researchers became familiar with this kind of work, which is quite different from the routine work in oncology. The problems were new, evidence of late effects was not always known and had to be searched for. Many former patients were apparently healthy, with no evidence of late effects. Compared with severely ill oncological patients daily seen in the clinic, these youngsters seemed a luxury. We have been reproached bcause we »waste precious time« on healthy people. However, in time even these colleagues came around and understood the need to help our survivors. There are some, who have not seen our work from close quarters and whom we keep trying to persuade to this day without much success. An added problem lies in the fact that we were among the first in this field so that information about what we surmised and have proved to be correct was not been available »in the litterature« at first. Most people seem to trust the»litterature« rather than experience and knowledge.

  We have learned a lot and we have been able to help a lot of former patients with this expeerience. We continue to learn from these young people and from what they tell us, mainly we learn to treat their problems without ignoring their emotions.

  Former patients, the young survivors, often remember their illness in a different way from us, their parents and their doctors. Have the memories changed during the growing – up process, or is it that, once you yourself have cancer, your outlook on it is changed forever?

  New and better times?

  Until now I have written about children, who were treated early, in the 70's and early 80's. They were treated under poorer conditions tha are avaiable to-day. Once we started to study the consequences of childhood cancer treatment in depth things began to improve. The children are being taken more seriously by doctors, they are being better informed, their parents participate to a much larger degree, there are overnight facilities now, so that parents from out of town can freely spend time with their sick children. Naturally, many problems remain: we don´t know enough about childhood cancer, our colleagues from other disciplines and especially the public at large are still lacking awareness of this disease, its diagnostics, treatment and consequences. There are still those treated recently, who suffer serious late effects, even if their numbers are falling.

  Does the child know, how seriously ill he is? Should we tell him the truth?.

  Marta complained of pain in her lower back. She was 14, the year was 1989. Soon, a tumor was found in her chest, with fluid in the pleural cavity, also enlarged lymph glands in the abdomen. The diagnosis, obtained from the fluid, was NHL, a form of lymphatic tissue cancer. She was put on chemotherapy. A later examination of cells, gained by aspiration, through a thin needle, from the enlarged abdominal glands, showed that we were dealing with a different kind of tumor – grown from muscle tissue-a rhabdomyosarcoma. The chemotherapy regimen was changed, radiation treatment of the chest and abdomen was added. This treatment was completed in 1990 and she was followed in the pediatric clinic. The tumor did not recur. In 1999, at her first visit with us, she was 24 and healthy. She remembers exactly the dates of her admission to and discharge from the hospital, remembers the courses and changes of chemotherapy. At first, she spent 4 continuous months in the hospital, after that she was allowed to spend weekends at home. She remembers being rather homesick, being quite attached to her parents. She was dismayed by the loss of hair, since that was evidence of illness and she did not feel ill. She also remembers persistent vomiting and painful infusions of some chemotherapeutics.

  She has read in her file about her having malignant lymphoma, but has never talked about that with her parents.

  Her mother, particularly, always tried to spare Marta any worries or bad news. As Marta likes to talk freely about her disease, it takes me by surprise, that she is anaware of its malignant nature. This news was a shock to her. Still, after we talked for a while, she calmed down. She has finished a 3-year vocational school, in economics. Is now busy with getting a driver´s license, has therefore no time for further schooling. But she does hope someday to be able to finish at least high school, also in economics.

  Marta is on good terms with her mother, step-father and younger half-sister. She has been living, for the last few years, with her boyfriend in an apartment. A year ago, 1998, she had an abortion in the ninth week of pregnancy. At that time she had nowhere to live on her own, besides, she was pregnant with twins for whom she «could not possibly care alone«. She is otherwise in good health, has regular menstruation and is on contraceptive pills. The clinical examination reveals only a markedly underdeveloped left breast. The tangled diagnostics did not unduly influence her treatment which today would be similar. She would receive chemotherapy and radiation, but would probably not have to spend 4 entire months in the hospital. It is also probable, that a 14 years old girl to-day would be informed about the nature of her disease and also told that cure is highly likely. It would be easier for her to cope with pain, homesickness and hair loss if she understood why it was necessary and would probably cooperate more actively in the process. Perhaps she would conquer the »taboo« of cancer at that stage already. This attitude towards cancer is one of the main difficulties encountered in the young survivors.

  Marta´s story raises several issues to be looked at in more detail.

  We have learned from her about:

  - pain and other physical effects of treatment (vomiting, loss of hair)

  - lack of knowledge about her disease, thus no explanation for her troubles, only guesswork

  - loneliness, homesickness

  - discovering the truth by stealth, from her file, therefore prone to misunderstanding, suspicions and added anxiety

  - overprotection by her mother.

  And the possible consequence of all this?

  Some are readily visible. Her shrunken breast, due to radiation, is a permanent remainder of the disease which, even if cured, has not been mentally dealt with. When Marta found out the true nature of her disease by her doctor, she was shocked. Would Marta, if she did not have cancer, still opt for an abortion? That decision was likely influenced by her fear and anxiety about possible damaging effects on her unborn child, or, that, ill and insecure as she was, she would not be able to raise the child properly and provide a decent living. And how was Marta´s pregnancy regarded by her mother, who still sees in Marta a sick child and worries about her health and life?

  During the last decad
es the treatment of cancer has improved also in the sense that nowadays nausea and vomiting are much better dealt with, intravenous injections for chemotherapy are much less frequent, due to the insertion of an intravascular cannula, that remains within the vessel during the whole duration of chemotherapy. The parents can stay with their child an unlimited time. Still, we are not giving enough support to the parents to minimize anxiiety as they care for, of their almost grown-up formerly sick child.

  We still don´t know how to prevent the loss of hair connected with chemotherapy. The effects of radiation sometimes remain visible and the patient is not prepared for that. Janko was transferred to the pediatric hospital after his work-up at the main university hospital. He was frightened by all the hairless and sick-looking children there, could not understand where he had been sent.

  There is no easy way to inform the sick child about the nature of his disease. What we do know is that by being honest, not lying to him, we may retain his trust.

  The child has to know why he is receiving injections, why suffer the pain and discomfort if we want him to co-operate without fear of the unknown. The explanation itself, of course, has to be