by Berta Jereb
conversations, being so warm, open and talented.
And then? Jernej never again showed up. I know he has not changed his address, since once he answered a written invitation. I wrote to him for follow-up in 1992, 1994 and 1997, with the day and hour of the appointment, adding that I would like to meet him and wondering why he does not come. What went wrong? Have I done something, has something happened to Jernej to make him want to forget us? I know this will not be easy. We could help him to ease the burden of his past, but forgetting will be difficult. Especially if all that came into the open at our first meeting was not genuine and the truth was supressed. Who knows? Looking through the now already yellowed papers I decided to look up Jernej. I have his new address, he has moved, married, has two children and lives, I hear, happily in another town. Shall I remind him of our first interview?
THE CHILD HAS THE RIGHT TO THE HIGHEST STANDARD OF MEDICAL CARE (Annals GA Human rights and health-The Universal Declaration of Human Rights)
The rights of sick children
At an aniversary of the Declaration of Human Rights the question arose whether we doctors infringe on the rights of children with cancer. From what we can hear from the little patients themselves, this happens quite often even if we are not always aware of the fact.
And when do we infringe on their rights?
We deprive the children of their rights when we do not take seriously their first symptoms. Delayed diagnosis reduces their chances of survival and can also lower the quality of life of those who do get cured.
Sometimes we violate their rights already at diagnosis. Maja for instance thinks so and is right. Listen to her story: Maja was first treated at our Institute in 1987 when 14 years old. She had been admitted first to the Childrens Hospital for a sarcoma of the right knee. Five months before that she had fallen from her bicycle, had pain in the knee and visited the trauma clinic from June til November. Finally, with increasing pain and swelling of the knee the suspicion arose of a tumor, the swelling was probed with a needle, some material was withdrawn and, under the microscope, proved to contain sarcoma cells. Chemotherapy was started, but after 2 months her right leg had to be amputated. Surgery which would preserve her leg was not possible any more, because the tumor had grown too large. Chemotherapy was then continued for another two months.
Since age 18, Maja pays regular yearly visits at the Institute of Oncology. She is well, has become used to the prosthesis. I talked with Maja about how she lived with the consequence of her disease, when she was 14 years of age. She had finished grammar school at the time, but had no wish to continue. Asked how she accepted her treatment, she says, that with her parents help she somehow agreed to chemotherapy; it was a real shock, however, when bluntly told by the (female) doctor that her leg would have to be removed, she refused, was discharged, put on sedatives and finally persuaded by the parents to consent to the operation. This was a hard experience for her, and undeserved. «Why me« she asks. Her life, she is sure, would be quite different if not for this misfortune. «I used to be an enthusiastic skier and cannot ski any more. And there is no substitute for that«. She is not interested in sledding or other winter sports. She also says that everything might be quite different if the doctors had taken her seriously at the beginning. She had been complaining about her knee pain for half a year before an x-ray film was taken. Once the doctor, looked carefully at her swollen knee, she was admitted to the hospital the same day. She is certain that in the meantime the disease had progressed to the point that she had to lose her lower leg instead of getting away with only an artificial knee. Maja is depressed at times, self-loathing and unwilling to continue living. She often senses people watching her on the street. The unfairness of her affliction and of the way she was treated, the way her complaints were ignored, evidently left a permanent scar in her mind.
Maja is married, had a daughter when she was 20. She complains of occasional headaches for which no organic cause has been found, and it is not easy for her to land a job. I still see her from time to time and when I met her recently, on the street, she seemed in a much better mood than ever before, even if she is still sure that life has not bee her just.
We may violate the child's rights during treatment, if he does not know, why he is being treated, what his affliction is and how the treatment will affect him. Thus he loses confidence in the therapist, whom he only knows as the person who causes pain and discomfort.
Slavko has something to say about that and also about how his rights were observed after treatment
He was 13 in 1973 when he had a brain tumor removed and received radiation at our Institute. Afterwards, a neurologist cared for him since he developed epilepsy. He accepted my invitation in 1986. When we talked, he was a handsome young man of 26, apparently in good health, still living with parents in good harmony, not thinking of marriage. He learned to be an auto-lacquerer, was doing well and was quite content, but still seeing his neurologist for control of epilepsy.
He does not remember much of the time of his treatment. Daily radiation therapy bothered him a lot, but he gathered that omitting radiation would lead to his death. He remembers the awful feeling of uncertainty, not knowing what this was all about. He says: Thinking back to-day, it would be much better if the children too would be told the truth, not only their parents, who then go around in sadness and you think you are going to die«. Once back home and with the headaches gone, he forgot about his illness and does not want to think about it now.
He was seen yearly at the Institute and things were OK. In 1991 he lost his job as auto-lacqerer-he could not get the required drivers licence, because of his epilepsy. He wanted to work in his profession, we helped him with certificates and personal interventions, but after 2 years he only found physical work, with spade and pick, for the municipality. Our interventions did no good. Our Ministry of Labor advised premature retirement, which he did not want and after 3 years of this labor he found a job as auto-lacquerer. Two years later he was again in our clinic: he lost his job again on the grounds of »difficulties« which he was hiding all the time«
Slavko, still has periods of »absence«, lasting a few seconds to mostly a minute, about once a month, in spite of anti-epileptic medication prescribed by his neurologist. Our interventions were in vain, again, in spite of our warning that such discrimination is illegal in Slovenia. This time we proposed an official evaluation of his fitness to work, to no avail as yet. Slavko is now 40, lives with his mother, is on the dole but is willing and capable to work in his chosen profession, where there is no lack of jobs. How can we help him?
We deprive the child of his rights if he cannot take part in the decisions being made about him. He is then being treated as an object.
Franci, born in 1960, was first treated at our Institute in 1973. His story was pain in the knee for 5 months and then he fell and broke his thigh. X-ray films showed that the thigh bone broke because there was a tumor. This was proven by microscopy of a small piece of the tumor tissue. Surgery followed with the result that his whole right leg was removed, from the hip joint. He was 13 years old.
Franci accepted our invitation and was seen, for the first time after his operation at the Institute of Oncology when he was 28 years old. He wore no prosthesis, the wound healed a long time ago, there was no evidence of disease.
He remembers well the events before and after his oparation, the pain, the admission to the Institute and how he was told, the next day, that he must lose his leg. Then he was operated upon. All in one day and nobody told him why and how. After the operation, he was told that his leg had been amputated. But he did not believe it since he still felt his leg. The first days after surgery were difficult, he has little to say about it, is on the whole shy and reticent. I dont know how to help him. He cannot stand erect without a prosthesis, which he refuses, however, and has job problems. He refuses a visit with the orthopedists«I have been through this» . At the end of my wits I try to make him see a psychologist, he refuses.
Franci wa
s last seen at the Institute in 1992, after repeated invitations. His problems persisted. I had a talk with his employer, who was was willing to help or so it seemed to me. I also sought help with the Center for Rehabilitation, to enable him to use a prosthesis. I also wrote at the time that early retirement would be the last resort, which would be a pity. Franci is still young, able to work as a watchmaker, the trade he learned.
We wrote to Franci several times, he always refused to pay a visit and I don't know how he is now. I shall try to pay him a visit at his home. If successful, I shall explain to him that I know what we did wrong at that time and that we have in the meantime learned to treat our small patients in a better way, shall apologize for our treatment of him, when he was small, helpless and a severely sick child. I shall ask him again to accept our wish to help him, it is, after all, his life.
Mirko decided himself about his fate. When his leg was amputated for a sarcoma, he was 14. Several years later he said: «It did not bother me too much. I was facing facts. It was, like, either lose a leg or, maybe, with luck, living only another one to two years. I came to terms with this, I was not the only one«.
Children may be deprived of their rights after treatment as well.
A child´s life cannot be arbitrarily or unlawfully interfered with. (Declaration of human rights 1948, paragraph 16).
Vesna, whom we first saw when she was 18, has suffered such an interference.
At the age of one year and a half she was treated for a tumor in her left kidney. She does not remember the treatment, was only told by her mother that she received chemotherapy after surgery. On our examination we found no evidence of disease. She then visited regularly, graduated from Medical School and is now a physician with the department of infectious diseases. She is married, has a daughter who is OK, as far as we know. Still, when we a few years ago prepared a TV show about our former patients, she resolutely refused to take part, without explanation. We did not insist, of course, seeing how strongly she reacted. However, after some time she trusted a nurse, with whom these young people sometimes feel more relaxed. She told her that, when she was 5 years old, a journalist in the kindergarten was asking her all about her illness, took photos of her and published this in a newspaper as a case of a »miracle child«, who conquered cancer. She was recognized from the photo, people stopped her on the street with«my poor little girl« and so on. In Medical School she disliked intensely her practice at the Institute of Oncology. She also thinks that she will never be able to work with cancer patients because of her unplesant experience.
WHAT MAN STARTS, GOD MAY TURN TO HIS OWN PURPOSE.
(or, resilience, too, helps to win over the illness).
Silvo, born October 75 as one of triplets, is the only survivor, one of his brothers died at birth, the other in an accident. Our little knight, however, has been tough and stubborn since his first hours. His mother was severely ill during pregnancy, the birth was premature, the boy was put into incubator in Ljubljana. He was blue in the face and could hardly breathe. After 13 days of this an x-ray film was taken and showed a large tumor in the chest, compressing the heart and the airways. He was slowly getting worse and was connected to a respirator. When he reached over a month of age, still alive against expectations, I was asked for advice. The resilience of very young babies was already known at the time and I decided to treat him. A puncture with a thin needle (as far as I know the world first for such a tumor in such a baby) gave us the diagnosis and the required chemotherapy and radiation was rather mild. In 2 weeks he was off the respirator, at 4 months he was discharged. Only mild treatment was necessary to »turn around« the progress of tumor and Silvo could deal with the rest of it himself. Actually, we just gave him a hand, which he grabbed and pulled himself out of the ditch. He was in good health during the following years. What remained was a learning disability, due to lack of oxygen in the first months of his life. He is now 26, works as a master shoemaker and is a happy, handsome fellow and a delight to his mother, with whom he still lives.
A few days ago, on my way from building A to D of the Institute of Oncology, I met our surgeon. With a glowing face (a rarity for him) he told me: «Marina wrote and sent photos of her 2 kids«. We have not heard of Marina, a rather special patient, for some years. And now this! Well, so that you will understand:
Marina was 15, when admitted, in 1981 to the gynecological ward of the University Hospital in Belgrade. She was operated on for a large abdominal tumor that could not be removed, because it involved the ovaries and the gut. A bit was taken only for diagnosis, which was: sarcoma, very malignant. Consulting experts in Paris advised repeated attempt at removal as her only realistic hope. This was attempted, without success in Belgrade, and then in Paris as well. There she was started on chemotherapy. At six months this was unsuccessful and changed to another combination, and then another and yet a fourth one. Marina was 3 years on chemotherapy of different kinds, including practically all drugs known to have the slightest effect on this kind of tumor. But the tumor grew. Luckily, it did not spread through metastasis. Finally it was so big that it obtructed the flow of urine from the kidneys to the bladder. She then had catheters inserted in both ureters in Paris. They did not even try to remove the tumor any more.
Marina arrived in Ljubljana in 1985, she was 19 now. Emaciated, with an enormous abdomen, she did not complain, was patient and confident that we could help. It turned out that she had been in jail several times. In company of drug addicts, she also used some, but when the police arrived, she could not run, because of her »stomach« and landed in jail. How to help her? It was not an easy decision. We thought about chemotherapy or radiation to reduce the tumor size and possibly to operate easier. This was dangerous because the kidneys were already damaged and could fail completely. On February 13 our surgeon decided to operate no matter what, it was a question of Marina's life. He hoped to be able at least to remove some of the tumor to relieve the burden on other organs. The operation went on for 8 hours, (the report fills 3 pages), the tumor was totally removed and weighed in at 30 lb. There were no complications afterwards. In 5 days Marina could eat normally and in 3 weeks she was discharged. She visited regularly at the Institute, each time celebrated with a dinner for the whole heroic team – you can imagine that those long hours with the surgeon manipulating the innards were not easy on the anesthesiologist.
Marina was in Ljubljana for the last time in October 1990 and phoned in June 1991 that she is OK. Then war came to our country and we heard nothing. And a few days ago, hurrah, hurrah, Marina wrote, she is married, with two kids and happy. A fairy tale, but true. Marina never gave up, we did not dispair and everybody was rewarded.
We have such little knights in other parts of our former common country, unfortunately, they mostly remain silent. Probably at least some of them would need our help. We only know those in Slovenia and call them »little knights«. How did we arrive at this name? About that, later.
IT IS A SAD TIME WHEN IT IS MORE DIFFICULT TO SMASH A PREJUDICE THAN AN ATOM (Einstein)
Metka was born in 1965 and was treated for leukemia at the age of eight. Leukemia is cancer that starts in the bone marrow. The white blood cells become cancerous, grow and supplant other marrow cells such as red blood cells, which carry oxygen through the body, or platelets, which make possible the coagulation of blood. If not treated, leukemia leads to death. Treatment with drugs will kill the cancerous cells, additional radiation of the head will get even those hiding there, where drugs cannot get at them. Metka was on chemotherapy for 3 years and received radiation to her head as well. At the age of 13, she again developed cancer, this time in the lymphglands in her abdomen (lymphoma). Again, she received drugs (chemotherapy) and radiation to her abdomen. She was followed-up at the pediatric clinic until the age of 18. She accepted our invitation to the Oncogical Institute for an interview when 23. Metka turned out to be a strikingly good-looking young woman, shy, reserved, without complaints. As a consequence of treatment, she had no mens
truation. She wished to have a child, but the hormonal tests showed that she is sterile. Metka worked as an administrator, her husband also had a good job, they were fairly well off. She received medication for hormonal deficiency and started menstruating normally. The consulting gynecologist told her that she could not conceive. Metka applied for adopting a child, but was refused »because she has been twice treated for cancer«. A year later, at her next follow-up visit, she made us glad with the news that she in the meantime had given birth to a healthy, handsome boy. Alas, a tumor developed again, this time on the membranes of the brain. She was operated upon in 1994, then again twice in 1996, when she had to be re-animated because of complications. It took a month before she was able to talk, she was half lame on the left side of the body and only got better after long-drawn rehabilitation.
Metka continued with regular visits with us. She went through a lot of troubles during those years, even got divorced. Her husband is taking this very hard, says he loves her, but her mother interferes too much. Metka lives with her mother now, her son with his father.
At her last visit, Metka was rather content in spite of all the difficulties. She is taking long walks, still with the help of a cane, does gymnastics, manages stairs, enjoys music. Her main joy is her son, who is good in school, also studies German and is a talented musician. «That is what makes my life worth living«, she says. She is on good terms with her ex-husband, but they still live separatly.
WHAT HAVE WE LEARNED FROM THESE CHILDREN?
Pediatric oncology in Slovenia.
Pediatric oncology has developed before my eyes, with an occasional small contribution of mine. About 30 years ago I was writing my doctor's thesis about a malignant tumor almost exclusively found in children. Collecting data from medical charts in Scandinavian countries I not only learned a lot about the disease and its treatment, but also about the thoroughness of the doctors in exploring and documenting the course of the disease. From then on I know that the level of medical care shows not only in treatment, but also in documenting the goings on. Even later generations can learn a lot from this. Those doctors' files about their interventions, their observations, their thoughts and dilemmas were vivid. Of course there were also opinions, from the 50's and before,