 
The Little Knights

Berta Jereb

Copyright 2013 by Berta Jereb

Smashwords Edition
Introduction

Happiness is good for the body,

but it is sorrow that strenghtens the spirit.

Our successes and our failures, our whole life is shaped by what we bring with us into this world, is within us, and by what we meet during our life, our experience. Thus also my wish to write this booklet. I am by nature open, chatty, eager to tell what I know. My encounters with those about whom I am going to write, have filled my life and I am convinced that they are so precious that I have to share them with you.

But first a few things about myself. Fate has been kind to me; I have been privileged despite some trials, obstacles and disappointments. I do not know why I feel this way. They say that it is very important how you feel when still within your mother's body and right afterwards. Maybe it was. Or, maybe, being aware of having been born and spent the childhood at «the most beatiful place on earth«. That is what my father said when he took me, a small girl, to the hill from where we could admire our home, the house amidst the blossoming orchard, surrounded by green fields with a nearby forest and the river just beyond our courtyard. He told me about fair, large cities he has seen, from Rome to Budapest, but whose beauty was no match for that of our home. I have myself seen these cities, along with many others, later on, but the the memory of my home in springtime has remained with me forever. And the notion that nobody has had better parents and that everybody in that large household loved me. It was love, I never met with hatred or envy at that time. In high school, in the city, I realized that many of my companions would like but could not afford to go there too. I have tasted the horrors of war, but was privileged, along with my family, to live through it and rejoice in liberation.

Fate was good to me in the sense that I have always liked my work, whatever I was doing. People often wonder how I manage to cope with all my work. They do not realize that the heavier task, the greater reward. Of course you know how happy feelings a childs smile can elicit, but how much more so if that smile, and trust, comes from a child who is sick, frightened and in pain.

I shall always remember a youngster, I have treated, how he hugged me. He did not say anything, but I felt his appreciation for what I had done. This is why I am writing these lines, grateful to those who, with their pains, have planted in me the desire to do good and to learn to help them and also, to help other people to understand them.

Sometimes I think that God who gave me so much happiness and love also gave me the opportunity to pay back at least some of this to them, whose youth was different from mine. l am presenting some of their stories for you. Since a good part of my life has been intertwined with that of children and youngsters treated for cancer, there will naturally be something said about me as well, for which, please, forgive me.

As a child I was never sick enough to go to the hospital. But I do remember the worry on my mother's face when I had jaundice or when she found me too close to the river, which was considered dangerous and treacherous.

That fear, worry and sorrow I also saw in the eyes of the parents who had a child with cancer. This booklet is dedicated to them too even if I admit that they take second place: the sick child always comes first.

This is not a work of science, even if it could not be written without scientific research. It is not a declaration, even if it comes from a lifetime observation and experiene. It is about special people, those, who as children, had their bout with cancer. During their illness and treatment these children were in pain, were freightened to death, were lonely, felt abandoned and felt injustice. In the booklet we see them as young adults, we meet them on the street, do not notice them, but they carry within them many a tresure and secret, unknown to us. Myself, I cannot pass them by, I have been too close to them. I think it would be wrong if their experience would not enrich other people, especially those of the same age. Perhaps their stories will make people respect them, as happened in my case, perhaps they will give them another perspective on life, which is more precious than they maybe realize. Perhaps. Mainly, however, these young people deserve some attention and sometimes some help, as we all do from time to time. Perhaps their experience will help us to realise how difficult life can be without love and understanding. Even for us, who have perhaps never been seriously ill.

All the stories are true as told by the youngsters, nothing added, nothing deleted, the names, however, are, with few exceptions, changed.

Wisdom cannot be thought.

We have to discover it ourselves walking a path which nobody can walk in our stead, with efforts which nobody can save us from.

(Painter Elster in a novel of Proust)

How did it all get started?

The whole story is too long and does not really belong here. Nevertheless, just a few words about it.

Most of my professional work has been with children who had cancer and most of my colleagues in different countries know me for that. I have spent two decades abroad seeing daily at least 50 children afflicted with cancer. In 1984 I returned home. Slovenia is a small country. About 50 children per year get cancer. To a doctor at the Institute of Oncology, some time remains, and a lot of other problems, besides taking care of these children. Each year more children are cured, at least 30 of them join our community with their rare experience of having conquered cancer. For us doctors as well, this is an extraordinary group of young people-it did not exist a few decades ago. Then we did not know how to cure them. But we have made advances and are still making them. Cure is not enough, however, not any more. The quality of life of these youngsters is becoming more and more important, to them and to us.

In 1986 I was invited to an international meeting to talk about my experience with the consequences of childrens cancer and its treatment. This prompted me systematically to collect and describe those late effects. I invited all those who had been treated for cancer as children in Slovenia, offering them an interview and help if needed. Nearly all responded. I was shaken after the first interviews and had to pause and collect my thoughts after about fifty. Most of them were not under the care of any doctor after they reached 18 years of age. Whoever had treated the child was happy with the success and said so to the parents and the child. Then they were on their own, having been fortunate enough already. They came, mostly, even if grown up, accompanied by their mothers still watching over them. My questions as well were mostly answered by mothers with »the child« quietly, shyly awaiting the outcome. His path towards independence seemed to be arduous, the overprotecting mother being of scant help. Some, however, came in the company of their spouses or partners.

They all co-operated, were interested in the recommended procedures and were full of hope about coping with their problems. Some were expecting social help, help with the school, the job, their social life. The more grown ups were concerned about their fertility, possible consequences on their future children.

The clinical check-up showed that more than a half of them were in need of some medical care and that virtually all of them, on detailed psychological testing, showed what was obvious from the very beginning- shyness, restraint, lack of competitive drive, a sort of modesty. The price for their cure, most likely. Some were more, some were less content with their lot, but this had little to do with their outward appearance.

But no set of tests can match the overall impression, gained in such a short time and in such a concentrated manner, They are just different from their peers, in my eyes they are better. They value their life and do not wish to squander it. They still harbor the fear of death, but also the will to survive and live on. It is a joy to look at them and you just have to like them. They command respect for what they are. They have gone without support by doctors or by the community after treatment, facing the challenges of life on their own. In view of this, their achievements seem admirable.

Based on these first impressions we started to plan our work. We asked the Ministry of Science for funds and started the project: «Assessment of late effects of childhood cancer treatment«. The ministry financed young researchers, first one, then two more doctors and a clinical psychologist. They worked with enthusiasm, cooperating with colleagues, specialists from the pediatric clinic and we have established, among the first in the world, a »model« for such assessment and follow up. It helped that Slovenia is a small country, that we oncologists and pediatricians know each other and co-operate closely, and thus were able to include practically all previous childhood cancer patients in Slovenia. This being quite different from routine work in oncology, it was important that our young doctors learned and adopted new attitudes and routines. The problems were new, signs and symptoms of late effects of treatment were not always known and had to be recognised as such. Many of our former patients presented apparently in good health, without any consequence of treatment. Compared to severely afflicted cancer patients, seen and treated daily, these young people seemed a real luxury. Some colleagues reproached, quite loudly, that we are wasting our valuable time on healthy people. But soon they understood, how these »healthy people« are in need of help. Those colleagues, on the other hand, who have not had a closer look at our work, need persuading about its importance to this day. It did not help that we were among the first in our field. The data we at first surmised and later proved were not yet available in the »foreign litterature«.

We have not relaxed ethical principles in our work, which had to be approved by our ethical commision. Among the ethical principles in work with cancer patients are: respect for the patient, commitment to do the best for him(her) and to minimize any possible damage, thus achieving the best result with as low a »cost« as possible. Selecting individuals for investigations has to be fair, based on the problem and not on, for instance, our ability to locate or persuade the patient to co-operate.

We have learned a lot and were able to help many with what we learned. We continue to learn from these young people both how to cure their ailments and how to consider their emotions. Their experience is unique without doubt. Some have been enriched for life by their growing up with the disease, their relations with medical personnel, developments within their family, by their gaining perspective on the meaning of life. Others have become hampered in their strivings. It is our professional duty to understand the consequences left by the disease and its therapy in each individual.

My first interview.

Jernej was the first who answered my invitation in 1986. He still holds a special place in my mind. Not because he was the first, nor because he was so likable, but because he projected for me a lot of what I observed and learned in later years and could use in helping those in need of help. Admittedly, my impression is different today from that time, when I knew very little about what is going on in the minds of those who survived cancer in childhood.

I am also a bit disappointed, I have not heard from him in years. Yet, at the time I fancied we were friends forever. Our interview from 1986 is 4 pages long and I shall print it as it was, perhaps you will understand.

Jernej was 20 at the time. In 1973, when he was 7, he was treated for a tumor of the right palm, his right forearm was amputated. Three years later there was a suspicion of secondary tumor to the lung, but it turned out to be pneumonia only. He was followed regularly at the pediatric clinic, the tumor never recurred.

Facing me is a handsome young man of 20. He is rather delicate and really pleasant to look at: open face, blue eyes, curly dark hair, a broad smile. He feels »perfect«. Apologies for not coming earlier, lots of work at the university. He is studying sociology and Slavic languages, has no problems with studies or with his health. No evidence of anything wrong on physical examination.

My questions are not orderly, since Jernej is the first interviewee.

Evidently he gave some thought to my first question before I asked: what was his reaction to the loss of his forearm? «When they took it, I was not aware of anything in particular, you know, because the feeling of having the limb remains in a way. Strange feeling came because I felt that I still had the arm. I remember clearly how I »carried« the spoon to my mouth and then it did not materialize. Obviously I just did it in my mind. But I soon learned to eat with my left hand. Another difficulty emerged at gymnastics. After the hospital I started grammar school, first class. And immediately joined gymnastics. When I slipped or lost balance I tried to catch myself with the right arm, which was not there, and so I fell repeatedly. But I got used to it soon enough. I also soon learned to write left-handed. It was a bit difficult when I had to push the pencil instead of pulling it, making smears. But I soon found out how to hold the pencil a bit obliquely and writing was no more a problem. Thus, physically, I hardly noticed anything wrong. Even in sports I could participate more or less as before, have been skiing since I was 4. In 1980 I applied for entry into a skiing competition among the handicapped. The organizer told me to be ready in 14 days, I was a bit worried, but at the contest, it was in slalom, I finished 4th in the field of 30. Once I became a champion among them, in the group using one pole only. I had a good time in that group. **Mainly I was glad to see others, becoming totally different people after being some time in our company, talking about this and that and all the troubles. They began to enjoy the company of their equals, felt equal and were happy and delighted to join us next year again. It was very good to see how people can change for the better.**

I have never felt discrimnated against, never felt inferior. True, I was lucky in my class in school. It was a fine class, I enjoyed talking to my mates. They never made me feel different for my lack of an arm. There was a slight disappointment when the time came to go to high school. I always wanted to study something related to electronics. I went to the school on the »orientation day« and it went fine. Later, however, the director called me and asked what is the idea, you need both hands to work with us. I felt aggrieved, talked it over with my brother, who has an M. Sc. in electrotechnics, he talked to the director and the director changed his mind. But so did I, due to the director's previous attitude. I chose social sciences and, again, was lucky. A splendid class of six boys, mostly artists by inclination, music lovers, great for discussions, feeding my own artistic ambitions. I have been performing in the theater, since my second class of grammar school, was always attracted by poetry and beautiful prose, therefore I later studied Slavic languages. Once we decided we, all six of us, would write a poem, but then I thought, what if I do it on my own? Thus started my career as a poet. Tomorrow I am reciting a poem of mine at a festival of local cultural organizations, it will also be published in our local newspaper.

As far as my puberty is concerned, I think it is done and over with. As far as I know it was not a difficult time for me. One of the problems I have, being one-armed, is, that I cannot always do what I would like to. I would like to help my parents, elderly farmers. During summer, I can run the tractor, but during the winter it gets more difficult, shovelling snow for instance is impossible and I am sorry for that too.

I always got along well with my parents and my brothers We are a large family of six. My parents are religious, while I myself have not figured it out yet: I do not know whether I am religious or not, but I do like to attend religious instruction. I feel well there, it is both interesting and fun, it is easier to talk to my colleagues than at other meetings. Also, there is no pressure to talk about God or not, to believe or not.

Asked about girls he says: »I cannot say I have a girl, though there is one with whom I get along very well, alone or in company of my friends. It is more difficult when we are with her friends. She is 17 and I think she might be ashamed of me in front of her friends. Perhaps they would reproach her for not being able to get a boyfriend with two arms. Yet I am not particularly unhappy about this. I was at a carnival dance yesterday and had a very good time, lots of conversation, not feeling inadequate, loving everybody. Everybody seemed good, friendly and interesting, I liked the company throughout the evening.

It was only a short time that I felt hatred and envy. Whenever I felt that toward somebody, I tried to sit down with him or her, talk it over and telling what I do not like.

Do I really love this girl I talked about? Hard to tell. I do not really know the difference between liking and loving somebody. About this girl I think I can say that I like her in a different way. I can write a song about her any time, without inducement. Just thinking about her, I write a poem. With other people, a poem comes to my mind if something interesting happens, yet I also like other people.«

I ask him whether he was afraid of his illness, perhaps of death. «Afraid? Yes, I was afraid of needle biopsy of the lung in 1976, when they thought I might have metastasis. I have never thought of myself as being seriously ill; I have always felt healthy and normal. I remember **always having a strong wish to live and enjoy life**. I wanted to live, there are so many things yet to see and taste. Only once have I pondered about death, that was when a colleague of mine died of a similar disease. He was older than me; maybe five or six, but not more than ten years older. I was visiting him two days before his death. He was about to get married and he gave me a poem of his to read. It was a very short one, I assumed it was about his bride- to-be, but it struck me as a premonition of death. Just the two lines,«There are two of us, but you are one and only one« or something like that. That was when I thought about death, mainly of my friends. But I have never thought about death as a consequence of my own illness«. He would not talk easily about his illness or possible death. There will be further occasion for that, I think....

After all this we became friends. He asked me to call him by his first name and I did. He also asked me for the address of his surgeon, to write to him and say thanks. I also gave him my address, he promised both to write and to visit again. I believed he could be of considerable help in our future work with former cancer patients. In a future group of parents or young patients facing amputation or similar surgery, he could contribute a lot in 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 was 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 menstruation. 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, 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 achievement. 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 that we watch the little patient all the time during the »session« on the screen and the parents can talk to him as well. Sometimes a child finds the whole thing an interesting »happening« which, at the very least, does not hurt.

Nevertheless, it may be a scary thing, especially the first time, alone, in a darkened room, beneath a monster machine and only half understanding what is going on. A very young child, a baby, is often being tied down or fixed in a hard, rigid, molded »bed« so that he cannot move, or even put to sleep. Whichever way, the child feels violated and helpless. It is very important that both the child and the parents should be well prepared for this.

Besides, radiation treatment is a long-drawn procedure, going on daily for several weeks. Younger patients often need quite a bit of persuasion to lie down under the machine. Lollypops and playthings do help, but most help must come from the parents. A rare child finds this a relatively positive experience.

This is how Ljubo spoke about his radiation treatment, after having gone through all kinds of hardship before his brain tumor was recognized, operated upon and put him on his feet again. He was 10 at that time. Radiation treatment on outpatient basis took 8 weeks, prone in a very uncomfortable plaster bed. «I was greatly relieved when I could leave the hospital. Perhaps this is what the veterans felt after the war? If nothing else, radiation at least did not hurt. The way they treated me made quite a difference. They talked to me, sometimes I was given a lollypop, and not« because I was good«. Unfortunately, there were consequences, my hair fell out. The whole thing was probably made easier because I had been used to trouble and also because I knew in advance what to expect. I was told that my hair might or might not fall out. But I don't know of anybody, who did not lose his and so had I. To know this forehand makes it easier, though. An added shock was the worsening of my eyesight so that I had to start wearing glasses« (This, however, was not due to radiation, even if Ljubo still thinks it was).

Chemotherapy,

meant a huge step forward in childhood cancer treatment. Children with cancer died during previous decades, in spite of sometimes »sucessful« surgery and/or radiation. This was because of metastas-implants of cancerous cell through the blood stream to vital organs and tissues. We usually don't see these at the time of diagnosis, but we know from experience that they exist. They often crop up in an organ and start growing, if no method was applied to destroy them, before they settle down. To cure leukemia or lymphoma, widely spread, when discovered, is not possible without chemotherapy, of course.

The very word chemotherapy somehow revolts the patients. Again, children are more tolerant than adults, but they don't like it either, especially if unprepared. They do not understand why it is necessary and good for them despite having to spend a long time in the hospital where the child feels lonely and abandoned. But, the anxiety and uncertainty experienced by his parents remain with the child. Therefore it is right that both the child and his parents be properly prepared to face the unpleasant aspects of chemotherapy. These can appear as damage to healthy organs and tissues, such as bone marrow, mucous membranes of the intestine, kidneys and nerves. Sometimes, though not often, these side effects can be life -threatening. Therefore, the course of chemotherapy has to be supervised by a doctor, preferably a pediatric oncologist. For the child, these unpleasant side effects take the form of fever, nausea, vomiting and pain. Most our former patients named chemotherapy as the most troublesome part of their treatment. It is mostly administered through a vein, but in about one third of the patients it is necessary to make a puncture with a long needle into the spine to deliver the medication properly into the spinal canal. The child does not see what is happening behind his back. This mode called a lumbar puncture is a particularly unpleasant memory for children.

**Ljubo** , (we shall meet him again) described it like this: «My most vivid memory is that of lumbar puncture. I should have been suspicious of the nurses insisting that this won´t hurt. I was really suspicious when three nurses held me strongly, so that I should not move during what should not hurt me anyway. But it did hurt, and very much so. As a price for good behaviour (I really coud not do otherwise, held down as I was), they gave me candy. I yelled: »You lied to me and that is not nice!« And threw the candy across the room. Such a moment remains in your memory. Who can you trust if not those who take care of you and treat you when ill? Ljubo was 10 at the time, he is now over 20. This was his only experience of the kind, but there are other children, who go through such procedures once a week or once a month during a whole year or more.

One toxic effect of chemotherapy, not dangerous but especially noted by the children is the loss of hair. It may cause anxiety and depression. Naturally, the experience is different for children of different age. A small child will probably suffer more because of pain or the abscence of his parents, an adolescent more because of hair loss.

**Marjan** , born 1964, was first seen at the Institute when he was 10. He was treated for a sarcoma on his left ear, spreading to the lymph glands of his neck. He was operated upon, irradiated and received chemotherapy for a year. In 1986 he acceped our invitation to visit the Institute. He was now 22 and had not seen a doctor for several years. He was still living with his parents and younger brother in good harmony. He is lively and talkative. About his memory of treatment: **«All of a sudden I noticed I am losing my hair. On the way home, in the train, I touched it and it remained in my fist. This scared the hell out of me - nobody told me that such a thing could occur. And I thought, if this could happen without warning, something much worse also could.**

At about 14, he began to think about the events connected with his illnes. He found out, that he had a malignant tumor and for the first time it occurred to him that he might have died. He also uderstood why nobody ever talked to him about it: because he was expected to die. During his adolescence and up until recently he had »quite a spleen«. He has had no problems during grammar and high school, but later on he did. He was mostly alone at home and did not socialize much. If he did, though, everybody seemed to stare at the left side of his face, where his skin was scarred by radiation. After graduating from high school, he studied agronomics successfully, but stopped half-way. He could not continue in spite of studying hard, parents pressing and his nerves on the end. It was just getting worse. He took a job as a chemical technician, perhaps to continue with studies after calming down. He does not have much company; he lost it when he discontinued his studies. It is, however, no problem, he is rather sociable now. His psychologist wrote at that time: **This boy´s intellectual capacity are extremely high, but of no use to him due to the simultaneous emotional disturbance. In the emotional sphere I note a suppressed aggression with infantile emotions and mainly defective adaptation as well as a certain mistrust. At the same time there is a pronounced inner insecurity together with an obvious need of warm human contact.** And the opinion of another psychologist, a few years ago: «His mental capacity is very high. But more pronounced are emotional disturbances with feelings of deprivation on account of his previous illness. Thus, his self-image is ruined. This represents a serious obstacle for his daily functioning.«

Marjan remains single at 37, lives with his parents, has not graduated from university. He manages a small private firm but cannot live on his salary. He came for advice, and help. He is well-known to our team, has many friends, has taken part in many meetings and charities. Still has long hair, covering the left side of his face. His business activities remain poor.

**Sandi** survived a similar tumor, with mostly similar treatment but his story is much different. True, he escaped radiation, so that a surgical scar on his knee is the only visible mark left. Sandi is his true name, since he gave an interview for a newspaper.

When Sandi was 5, a painful lump appeared on his right knee. It was found to be malignant and was surgically removed in its entirety. Sandi received chemotherapy for 10 months after that.

Ten years later, at his first visit at the Institute of Oncology, at age 16, he said that he had had no fear of surgery. It was far worse to cope with chemotherapy; to this day he loathes all kinds of medication. It bothered him most, plus the fact that he had to stay at home for such a long time. He could not understand why he had to lose his hair and why he had to undergo such severe, prolonged treatment, when, after all, he had had no painful disease. What kind of disease he had, he didn´t know and doesn´t know to this day, doesn´t want to think about it.

He is in first year of high school, feels totally equal to his peers, equal in all activities. Left with no complications of his treatments or his illness, he indulges in riding. He has liked riding ever since he spent a vacation with his grandmother, who had horses. He has had no doubt about what he would like to do and what he would do. He was average in grammar school, this year he is doing worse, because »I don´t study enough«. Concentrating on something for a longer time gives him headaches.

We discovered no evidence of disease and the psychologist wrote: **«I find no psycho-pathologic signs in this intellectually average youngster«.**

Sandi visits us yearly. Naturally, he is still riding and has been rather successful. We could read an interview with him in a newspaper, after one of his several victories. He says: «Each victory is something fantastic, wherever you compete, on whatever level. Yes, this makes it all worthwhile.« He paid a visit to us just after his first place at an international competition in Hungary. What was on his mind, when he went there? »Hey, I went there to win!«

Again, a year later, we read in the »Daily«: Sandi Smolnikar is the best. He won with two horses, the most difficult category L and was second in category A2. Among 130 competitors from 24 different clubs he was pronounced the best.

Sandi is now over 30, is gradually letting up, still rides for pleasure but is active as a teacher and trainer. He holds a good job, is happy with it, is married with two kids and together they have also built a home. Yet, all is not as simple as it may look at first glance. Sandi was at the Institute a few days ago and also visited me. Among other things we talked about our group sessions, which he ignored since they would only remind him of the unpleasant past that he would like to forget completely. I told him that, as far as we know, these things cannot be forgotten. If you do not unload the burden in conversation with those who had similar experience, something remains deep down. He admitted that here, with me, he can talk freely about his disease and likes it. With other people, he would rather say that he fell and injured the knee or something like that. Then he says something that gives me pause and makes me think that his wound is not completely healed: «The other day a horse kicked me where my scar is and scared the hell out of me. I have been kicked much worse, in other places, have fallen from horses, but have never been nearly as scared as now, when I was kicked **right there** «

WHEN DOES THE TROUBLE END, DOES IT REALLY GO ON THE WHOLE LIFE?

The quality of life.

Survival curves do not show the whole truth about treatment success. The price of success, paid by the patient, has to be considered. The quality of the survivor's life is a reflection of that price. Our duty all of us who treat children with cancer is not only to cure them, but also to ensure their psycho-social survival. Otherwise we are poor servants to the patients and to society as a whole.

In comparing the results of different treatments in randomized clinical studies the National Cancer Institute in Bethesda, USA, introduced, in 1990, also an evaluation of the quality of life. Studies of this area in different parts of the world focused on how to define and measure this quality. A number of methods and questionnaires exist to-day and quality of life is an established feature in evaluating treatment results. Both survival and quality of life are the main indicators of treatment success.

What, then, is quality of life? How to define it?

For those, who have survived cancer, it has usually been defined as »well being«, which should, as a rule, include physical, psychological, social and spiritual aspects, which, of course are often intertwined.

**Mojca** was treated for leukemia in1974, when she was 3, she was on chemotherapy for 3 years and received radiation treatment to her head and the whole spine. Her first visit at the Institute of Oncology was in 1986, when she was 16. She arrived with her mother and was a pretty girl with blond locks, rounded cheeks, smiling, but shy. The mother provided most af the answers. Both mother and daughter were freightened, Mojca, as it turned out, has never been told what she was treated for. There were no remarkable findings, the psychologist only found slight emotional instability. Yet it seemed that Mojca (or maybe her mother) was not quite satisfied with this first visit with us. She returned to the pediatric clinic for continued follow-up. She even sought advice there when she got pregnant four years later. She eventually returned to us after repeated invitations; married now, mother of two, she continued her follow-up with us. As she was so shy at her first visit, I asked her, how did she manage to find a husband. «Well, on my own homeground, love came at once and we got married. «She seems happy, they both have jobs and are doing well, the boys are healthy and handsome. She also gave us a photo of the family. And so it continued for several years, she regularly attended, with her husband, the meetings and charities of our Little Knights Foundation, helped with our work there and seemed happy.

Then, two years later, trouble arrived. Even before that, Mojca has lost her job. Now she feels ever more tired, sleepy, but also nervous, irritable, especially with her children. Has headaches on and off, medication does not help. She wants to work, we promise to help her find something. However, when the opportunity is there, her problems increase so that she does not feel capable to work, even if she would like to. We examine her, imaging procedures and several specialists do not find any abnormality in her nervous system, all tests come back »normal«. To the psychologist, whom she knows from before, she arrives accompanied by her husband. Her complaint is pain along the spine and burning sensation in both arms. She is dropping things from her hands. Is on medication for the last 6 months, but it does not help. The psychologist was not able to establish a good contact with her: **«Mojca finds it difficult to establish an emotional relationship«. He thinks that she is rather communicating through her pains and problems, which she describes freely and copiously. She is not, however, prepared to talk about herself: « My life is otherwise in good order«.** The psychologist also thinks that his examination points to more serious emotional problems, feelings of inadequacy, fear, retreat into isolation, with consequent depression. **»Mojca tends to be both capricious and rather dependent at the same time. Her intellectual potential, though above average, cannot be realized adequatly. She refuses psychotherapy«.**

Mojca is now 32, she was cured of leukemia 26 years ago. Her disease was treated more aggressively at that time than it would be to-day, especially as far as radiation to the head and the spine is concerned. Her neurological problems, even if not registered by the most modern technology, are most probably due to this treatment. We have been observing similar problems in other patients, similarly treated. These phenomena are not yet explored and we do not know what the future may bring. It seems the least likely that the induced neurological changes and therefore the clinical problems, will fade and disappear in time. Mojca will have to come to terms with her difficulties, which will not be easy for her, capricious and emotionally unstable as she is. We hope that her intellectual capacity will be of help, as should be her family. She and her husband are regular guests at our meetings, trips and charities and it looks like being in this company is of help, that her peers understand. We, the physicians, shall also help as much as possible with our rather limited knowledge in this area.

On her last visit the neurologist wrote **: «Initial, barely perceptive deafness, chronic pain syndrome, functional pain. Condition after heavy specific oncological treatment in childhood with all the consequences of malignant disease and anxiety-depressive syndrom.** «He recommended a half-time job. We shall see, how this works out.

We have to admit that there is a lot we don´t know about the late effects of childhood cancer treatment. Therefore we maintain that all these former patients have to be followed-up for life so that we both learn from them and help them with their problems, with which they cannot always cope on their own. You will, I think, agree with me that evaluating the quality of Mojca´s life is not an easy task. Are her problems all due to her previous therapy, are they magnified because she was only a baby when treated, what is the source of her emotional disturbance, how does the quality of her life compare to that of an average Slovenian woman her age? More questions than answers.

Physical well-being.

Well-being might be defined as: no trace of disease, no problems, normal functions, independence.

What has remained within the memory of an adolescent of the physical feeling at the time of treatment? From the first visit we start browsing in the former patient´s memory. Specific questions follow when he trusts us with his story: what was his most unpleasant experience and what was most painful? Those, treated decades ago, mostly answered: hospitalization. Those, treated during later decades, mostly answered: chemotherapy, especially those, who had received lumbar punctures. With careful psychological testing of about 250 former patients we could conclude that repeated hospitalizations left behind more emotional distress than, for instance, radiation or surgery as such.

We found physical consequences of the disease and its treatment in more than half (60%) of the former patients. These were more frequent and more severe in those treated before 1980. The most frequent finding (63%) is diminished function of endocrine glands i.e. the thyroid, ovaries and testes. These hormones we can effectively substitute and, as a rule, the only problems remaining are infertility and the need for regular hormone substitution.

In 17% we judged the consequences of the disease and its treatment as »severe«. Some former patients are invalids after e.g. amputation of a limb. Those, who were treated for brain tumors are most often (41%) severely afflicted. Diminished intellectual capacity, partial lameness and epilepsy. This latter can be managed with medication and regular control. We also know 3 former patients with retarded growth after irradiation of the head and the spine; they are now midgets, depending on their parents. Some, with severe brain damage are living in homes for the disabled.

Somewhere in the beginning of this booklet I said that we shall not talk about medical and physical problems. However, I now think that it would not do justice to these young people, living on the fringe of our society, if I didn´t even mention their fates. True, they are somehow »taken care of« even if they deserve better than the circumstances allow. Their problems are screaming at us, not to be ignored. On the other hand, this booklet is about hidden things that deserve our attention.

There is another chapter that must be written. I pondered how to go about it and remain on firm ground without inducing undue fear. I decided to tell the truth without holding back.

The worst aspect in the life of those who have suvived cancer as children, is the emergence of a »second tumor«, i.e. a new cancer of a different kind. Fear, uncertainty about treatment and outcome is, naturally, overwhelming for both the patient and his parents. The whole calvary begins anew. We know former patients, who survived three different kinds of cancer. No doubt, they bear consequences, physical and mental, yet this very fact is a witness of how tough they are. You should meet a young woman, one of 45 patients in Slovenia, who survived cancer in childhood and were stricken by a »second tumor«.

**Marica** had been treated for leukemia in 1978, when she was 6, with chemotherapy and radiation to the head. Afterward she was regularly followed at the pediatric clinic where, in 1986, at age 14, a tumor of her left jaw was discovered, sarcoma of the bone as it turned out. Again she was put on chemotherapy and then had her tumor removed by surgery. The whole left lower jaw had to be removed. The defect was glaring, but four years later, when she was 18, skillful surgeons covered it by implanting one of her ribs. After successful treatment of her second cancer she became a regular guest at our Institute. All was well, the cosmetic surgery was nicely done. She did not have an easy time at school, but she did have a job, a drivers license and a lively social life. At the age of 24 she married and had a son. She grew overweight during pregnancy and later on but was otherwise happy. She was followed at our outpatient clinic of the Institute of Oncology and I also came to know her husband and son. When her little son was 2, we discovered a cancerous growth, in Maricas thyroid gland this time. An unpleasant treatment followed, which included surgical removal of her thyroid. She also received radioactive iodine and was put on long-term medication, looking for just the right dose of her hormonal substitution and then maintaining it. Finally, all was well again; it is now 4 years since her treatment for thyroid cancer. Even though this third episode of her fight with cancer had a lucky outcome, all the stress took its toll. Marica has marital problems, her husband has started to drink. According to Marica, there are problems with her mother as well as with her step-mother. Luckily, her son is doing fine.

Psychological state of health.

A healthy psychological attitude is described as an intention to keep under control the life-threatening disease which has caused emotional imbalance, a change of priorities in life, fear of the unknown, but also some positive changes.

Each former patient is also asked, at first visit, about fear during the disease. Many do not mention fear of death, but rather fear of pain, injections etc. Pain itself is not often well remembered, rather fear that »it will hurt«. Taking a good look at their hands we notice scarring from chemotherapy intravenous injections. Their veins are scarred, difficult to palpate and to inject. Nurses, who take their blood samples, know this very well. Many are afraid of renewed puncturing, some to the extent that they skip the visit with us.

Years after finished treatment most of their problems are connected with anxiety, fear of recurrent disease (or dissemination), doubts about the outcome of future tests and unpleasant memories of cancer treatment. These latter again take expression in anxiety, emotional instability, depression. We try to help here with group sessions.

In those who start choosing their partners or wish to have children, the question arises: shall I be able to have children? Will the children then be in danger, may they inherit my cancer? Only an expert can answer these questions, where answers may sometimes be clear one way or the other, sometimes rather involved. We do know some forms of childhood cancer based on genetics, but inheritance is not a simple process. As far as fertility of former patients is concerned, we may be misled by all our sophisticated testing. Remember Metka? This problem is particularly sensitive in males.

Social well-being

Here our concern is to neutralize the effects of cancer in individuals, their place in the society and relations with others. Mainly, this is about familial, marital and sexual problems, about social adaptation, jobs, fear of one´s condition becoming public knowledge, stigmatization, difficult re-entering the school or the job, change of professional priorities, discrimination. It often happens that a former patient is refused life insurance because of his previous illness. Just to-day I wrote a certificate for one of them, who has been followed without evidence of disease for 20 years now. They may have problems with refunding, for instance dental repair, necessary after radiation treatment, they may be denied a drivers licence. For several years we were obliged to renew yearly health certificates for driving. Apparentlly, some people could not grasp that the patient with cancer is, in fact, cured. Many a former patient will tell how his story is met with disbelief, or at least amazement. They also face discrimination based on the previous illness, though this is actually illegal, and, when applying for life insurance-where I am not sure if it is illegal or not.

It is up to us, physicians, nurses, psychologists and others to fight this ignorance, to spread information, awareness and tolerance. We are facing a lot of hard work, for, as you well know, changing attitudes is the most difficult social change. The Foundation, which we started, is dedicated to this; it is too early yet to evaluate it´s possible success. We do believe, however, that we have already achieved some modest advances and this is our incentive for continuing.

Mental well-being.

Mental well-being means the ability to hope and, confronted with cancer, to look forward and have a positive aim in spite of the uncertainties connected with the illness.

Mental problems may also be sadness, a feeling of wasted time during illness. Hope and a sense of life´s meaning are of importance. Some have emphasized the role of moral support as well as religion.

This loose concept, into which we have tried to frame our thinking, will show how complicated an evaluation of a life´s quality can be. There is also a question, what time is the most suitable for such an evaluation. We have most data on the patients´ experience during the illness and treatment itself, much less for the years after that, which makes it more difficult and more complicated. Remember our former patient Mirko, who for more than ten years was unhappy, depressed, angry at the whole world. Then he married, had a child and became happy, all the bad things of the past forgotten. Which time period is to be evaluated?

How does our own nature, our character, with which we are born, reflect on the quality of our life? Let us look at two stories and how they differ in their authors´ minds. The stories of two former patients are rather similar, even the psychologist could not find any significant differences or abnormalities with either of the two young women.

Among the sick children, some possess a sunny disposition which takes them through the illness, its aftermaths and further through life. Jožica is such a lucky one. She is 38 years old now, married, mother of two teenagers, an accomplished seamstress, content with her work. When 9 years old she was treated for leukemia, was two years on chemotherapy, received radiation, was several times in the hospital alone, without parents, but has no unpleasant memories from that time. While on the road to the hospital her parents cried, she was »laughing and singing«. For some time after the treatment she still had »poor blood« for which she received some tablets; these didn´t work so she stopped taking them. She continued with a glass of home-grown wine, bread with minced lard, beans and sauerkraut and her appetite returned, with it her health. Her psychologist wrote a very short report, mentioning that »her test profile is harmonic«. She shows up once a year for follow-up, is healthy and happy each time, at times accompanied by her husband. She also reports happily that her kids are healthy, lively, doing well.

**Lina** was treated for Hodgkins' disease (a form of cancer of lymph glands) at the age of 11. Eleven years later she first visited our Institute for follow-up. She remembered »everything« from the time of her treatment, she said. How it began with cough and fever, how a »shadow« was discovered on her chest x-ray and she was immediately sent to Ljubljana. She was afraid and dismayed, this being just before the first of May holidays. From admission to the pediatric ward she remembered a grouchy nurse saying: «Why do you come now, nothing will be done over holidays anyway, couldn´t you wait for two days? «She remembers the tests, the injections and medication, the worst was »that infusion which always made me throw up«. She took medication reluctantly and to this day has an aversion to tablets of all kinds. She also remembered the «test for abdominal lymph glands« and how, brought back to her bed, she was put into it with her head at the foot end so that she could read the chart. That was how she found that she had a malignant tumor and that she had a heart standstill during the procedure. This frightened her, she thought she was going to die. Then she was told that she was due for surgery, her spleen had to be removed. The day before surgery she was still knitting a plaid for her sister and was reprimanded for being up late in the evening, when she should sleep before surgery. She remembers saying that she has to finish the plaid, what if she dies during surgery? The next day she was full of rash, was transferred to the infectious diseases department, the cause for this rash has never been determined and to this day she does not know why she was not operated upon. After treatment she was OK, took a job as a physical worker, has two children and lives with their father.

Lina is followed regularly, has quite a few health problems, related to her previous treatment. Her psychologist at the time found no evidence of psychological injury, which is a frequent consequence of the kind of treatment Lina had received. Maybe what helped was the fact that she could get rid of unpleasant memories by talking about them during her reconvalescence and later, that she early found a partner in life and formed a family. She is now 38, has different pains and aches and worries about them at times, but is on the whole satisfied with her life and her family in spite of her modest circumstances. She has found many friends among the former patients and takes part, with her family, in our concerts and collective vacations. To many, she has become a valuable friend.

I asked myself: «Why am I here in this world at all? «

It has been noted in several studies that deliberation on the sense and meaning of the illness may be of vital importance to the patient. Those who survived cancer sometimes find a sense or purpose of the affliction as being given another chance in their lives.

**Ljubo** was treated for a brain tumor in 1984, when he was 9. Surgeons removed his tumor, then we gave him radiation treatment from head to rump for 8 weeks. He was the first child I have treated with radiation for a brain tumor after my return home from a 20years vagabonding abroad. During my last years in New York I had been intensely involved in finding the best way to treat this kind of tumor. Ljubo didn´t know that, but he knew that it was best for him to submit to the long drawn-out irradiation which was necessary after surgery. Every day except Saturday and Sunday he came, and lay down prone into a plaster cast in order to remain totally immobile during the irradiation. He could not see anything around him, he was all alone in the unfriendly room with the »Monster«, the cobalt »bomb«. We had few problems, things were going better day by day, at times I even caught him smiling, as I remember. In his memory, the irradiation figures mainly as a painless procedure, with friendly people and a lollypop now and then. We have not met for several years after that. I have met him as an adult, at the Institute, and we are in regular contact since;I often meet him at the Foundation The Little Knights, but also on the street, and we always have something to talk about. His psychologist has determined Ljubo´s intelligence quotients as well above average. He also found that he **has some emotional problems which deny him the use of his intellectual capacities.** Ljubo dragged his feet quite a while at the university, but graduated at last this year. We had another talk recently and he told me a few things worth thinking about. Ljubo dedicated a lot of his time to question the sense and meaning of life. «I asked myself, why am I here at all, in this world. One has so little influence on the course of his life. On the other hand, there is a choice: you can be embittered, or you can think that things might get a lot worse. What you had to go through can make you tougher and stronger as well and perhaps this is why we cope easier with life´s problems than those who have not gone through what we have.«

He has searched for the meaning in life in religion and has been looking for a way to translate religion into practical, everyday life. «Religion has become my life-style, what I do day by day. When sick, I was powerless, now I have some strength. I may loose this strenght, of course. What is it that cannot be taken away from me? My knowledge?This can be taken away. But nobody can take away my relation to God. This is unique. To analize this and to start thinking this way, I needed a grievious experience. Now I can solve my problems with the help of my Bible, which I study daily. I try to gather strength from it, to be humble, for example. Not humble in the usual sense, but the way the Jewish king David was. Ljubo converted his thoughts into reality: he graduated from the university and these his thoughts became his diploma thesis.

On lonely evenings,

With the howling wind singing its song,

I long to tear out of myself

**The burden of the day** (Mia)

The mental and emotional consequences of childhood cancer and its treatment certainly do not depend only on what is happening to the child, but to a large extent on the child himself, his ability to react, his parents, childhood enviroment, the health unit personnel. This is all intertwined. Researchers, evaluating the quality of life after childhood cancer treatment, do not have an easy task when trying to formulate a system for assessment. Do we know, at all, what is »happiness«? We are aware of the everlasting question: is every rich man happier than every poor man? What do the riches of health mean to one and the fact of having survived a lethal disease to someone else? I am well aware that I shall not be able to answer these questions with any numbers or certainty, I shall have to do that through the words of former patients. Of course, the choice and the evaluation here is subjective and so will be your judgement after reading them.

Our psychological testing showed that survivors of childhood cancer are different in some aspects from their peers, who have not had the same experience. By now one out of one thousand young Slovenes has survived a cancer. We shall have an increasing and a sizable group of people, worth our attention and care. Some survivors need medical help, some psychological or social assistance, some both or all three. We can learn from them how to better fight cancer as well as how cope with problems in later life, also fear and inferiority feelings.

Years ago, when confronted with these youngsters and talking to them, my first impressions were these: I admired them and I felt deep respect. At times I was moved to say: «They carry wounds, but also pearls in their hearts«.

We have learned a lot since those first beginnings. Through medical examinations we found, that at least half of them are in need of some kind of medical help and that they have to be followed for the rest of their lives. This, however, does not concern us here. We are here mainly interested in how the consequences of childhood cancer treatment make life more difficult for them, how they influence their private and social spheres. What was the impact of this experience on their developing personaliy? How their personal characteristics shaped these influences is probably to difficult a question. What we do know is, that as a group, they are different from the »normal« population of Slovenia-but also, that there are considerable differences among them, according to disease, mode of treatment, gender, age, milieu and other factors we don´t know. The society in which they live and where they try to thrive also has a strong influence on the quality of their life. Therefore, I am trying to call attention to this group of people. They will ever more contribute to and shape our Society, which, however, does not yet realize the importance of this phenomenon – a Society, which would rather ignore cancer with all its problems or at least shove it into a corner.

My message to this Society would therefore be this:

\- that cancer is curable (in children up to 80%)

\- that cancer cured, may leave, physical, mental and emotional scarrs

\- that there are also positive consequences: maturing, life values and increased tolerance of others.

Perhaps it is worth mentioning the fact that among all the survivors of childhood cancer in Slovenia, we find, among causes of later deaths, only one suicide. These survivors now number over 700. In contrast, there were, just in the year 2000, registered 147 suicides at the ages 15-39 years.

WERE YOU HOMESICK WHEN IN THE HOSPITAL?

»NO, SINCE MY MOTHER WAS WITH ME ALL THE TIME«.

(Mitja, treated for leukemia 1969).

**Zvonko** was diagnosed with leukemia in 1976, when he was 10. Two years of chemotherapy followed, and irradiation of his head. In 1986, at the age of 20, he accepted our invitation to follow-up. There he told us, that he had been more afraid of the city itself than of the treatment: it was his first time in Ljubljana (a city of 300. 000). He was told that his blood was deficient and that treatment would take care of that. He never doubted that he was told the whole truth. Yet he felt rather deprived, being taken care of by his grandmother – his parents were working in Germany at the time. «When they realized that this was serious, they returned home after all«. At times he was angry with his parents, who left him in the care of his grandmother while his twin sisters, born in Germany, were living with them.

He had no problems in school at first, but after moving into a town from his village, his marks dropped to his dismay. Yet, he graduated from high school without either problems or effort. He decided to seek work, studying further had no appeal to him. In his opinion, he lost the ambition during that fourth year, when his marks dropped; it was his first »failure«. He works as a conductor on a local train-no particular education necessary –likes his job, has a lot of free time and has no wish to advance. The psychological testing at that time indicated that **»Intellectually equipped highly above the average. There are certain mild abnormalities in the sense of suppressed aggression, probably with anxiety and depression; for this reason his efficiency tends to be limited or, rather, he tends to be passive.** «Zvonko is in regular follow-up at the Institute of Oncology. He is fine, content with his job, is married with a son and a daughter.

Today, after many years, I meet Zvonko on the corridor of the Institute, where he is for his yearly check-up. The whole family is with him: wife, two kids. I ask him to see me too, would like to ask him a bit how he is doing, what he thinks about his illness now, are the yearly visits a burden, the impact of the disease on his life? Again he mentions his forced staying with his grandmother has hurt him most of all **. «I was really hurt. But, when we built our home and first mother and then father came back, all that was forgotten. Then I was convinced that I am healthy and that everything will be OK«.** He maintains warm relations with his parents, is happy in the family and content with his job. He can´t say that the disease has had a great impact on his life, but of course, who can know such a thing? But he also says that things would probably be different, if he had retained a deformity or disability after the disease or treatment. He again expresses his gratitude and says: «I often think of what would have happened to me; would I be alive at all, if they didn´t recognized at the time that I had to be treated in Ljubljana, for it took quite a while to establish the true nature of my disease.«

Listening to people around me, their problems and complaints, I sometimes ask myself whether the cruel experience of a child with cancer has also made him more aware of his preciousness, more grateful for the good things that also came his way? Talking to them whetted positive emotions in me, who also has had a lot of good along with bad things during my lifetime, but which I tend to forget.

Parents

More and more children are cured to-day, yet the diagnosis of cancer still means, as a rule, prolonged, difficult treatment, disruption of family life and of school, anxiety, fear.

Parents, when they understand the seriousness of the situation and when they accept the risks and difficulties, may contribute a great deal to the success of treatment, as part of the team. The diagnosis of cancer is a cruel experience for the whole family, often affecting the mental stability of other family members. Therefore it is necessary early to establish trust and cooperation of the whole family. Besides the little patient and the quality of his life during and after treatment, we have to consider the others. During the long-drawnout, painful and demanding treatment of the dangerous disease, the little patient needs full support from the parents. They in their turn, must have enough inner strength and be prepared to cope with all sorts of problems. The stress during treatment can be as severe as, when the diagnosis is revealed. The child must visit the hospital even after remission; and when the disease recurs, which is not so rare, everything starts anew, with renewed anxiety and fear.

Some families want to participate in the treatment some don´t. We have no right either to force participation or to make them feel guilty, when they don´t feel ready to cooperate.

Several studies have shown the importance of support provided by other parents in the same position, but perhaps with a bit more experience. It is easier to identify with them, to overcome the feeling of being left alone. The positive experience of others is likely to induce courage and hope. The sooner such help arrives, the better. Exchange of experience, good or bad, enhances the ability to cope. Parents who make contact with »fellow sufferers« tend better to understand the disease and the process of healing with its problems. They feel more competent, not just helpless observers. This is especially true in groups of parents with children in different phases of the disease and treatment. There are those who were just informed about the diagnosis, those whose children are in remission, or preparing for surgery, or beginning new treatment, or, sadly, in terminal phase.

The families´ problems are manyfold; sometimes the parents have to live apart so that at least one of them can stay with the child. In difficult family situations, sometimes its members form closer attachments, most often between the mother and the sick child. This may also mean neglect, even permanent, of the spouse and the other children. Quite often it comes to divorce, due to stress, separation, feelings of guilt and helplessness – an additional burden on the child. Parents all too often disregard their own wishes, feelings and interests, thinking they have no right to relax and feel guilty if not worrying all the time about their child. Often they lose contact with their friends, sometimes on purpose, because they feel stygmatized by cancer in the family. At times, the »neglected« siblings suffer, and then may start to act improperly. Parents also, at times, are overprotective, are embarrassed to admit that they need to sleep or eat when the life of their child is in danger. All this can be eased by understanding, with support from »fellow sufferers«. It also helps by being able to spend as much time as possible at the child´s bedside without neglecting their own or their other childrens´s needs.

So, we have to make it possible for them to be with their sick children, to meet other parents in the same position, to cooperate with the health workers, including psychologists. Conditions in this area have improved markedly during the last decades. Parents from out of town have somewhere to stay in Ljubljana now, also with their sick child if feasible. Psychologists participate in the pediatric cancer wards for direct support to the older kids and the parents. There had been times, however, when all this was not available and the sick child was in the hospital alone, day in and day out. Lately, the parents have the choice of spending almost all the time with the child. Nevertheless, they might at times feel guilty about not having taken advantage of this opportunity, not spending all their time with their sick child and devoting some of it to the siblings. Uninterrupted presence in the hospital may estrange one or even both parents from the other family members. There may be no time left for other tasks and problems, because of exhaustion, both physical and mental.

Cure is only the first step in healing of the family.

How much do we know about future physical and emotional problems of these parents and how to prepare for them? At the end of treatment, fear, anxiety and, quite often, isolation of the family, remain. The parents, on one hand, are anxious, sad and ashamed at times with guilty feelings about their child' illness. On the other hand are friends and relatives, probably feeling sorry but unable to talk about it freely and openly. They would rather avoid meeting the family so that the unpleasant subject does not come up. Slowly, talking about cancer becomes a tabu. Yet our duty remains to alleviate the trauma as much as possible. Here work with parents´ groups has proven to be of great value, also after completed treatment. We are facing a lot of obstacles in this area. The main one is certainly an almost total incomprehension of the need to follow these surviving patients through their lives. To begin with, the doctor who cared for the child is reluctant to inform the child and the parents of this need. The parents, who want to protect their child from anything unpleasant, would rather skip the follow-up, so would a teenage survivor who wants to forget all about it as soon as possible. Alas, it is not as simple as that. The very fact of not reconciling to the consequences of the disease and treatment that demand follow-up, suggests that they have not got rid of their fear as yet and that they need some help.

For the time being, such help is being offered in the form of group meetings of former patients. Such meetings would be necessary for their parents as well. This is not feasible, however, at present, due to total lack of public understanding. Perhaps the parents themselves will see reason to join forces and give our Society a push in the right direction in this area. As far as psycho-social help to families is concerned, we are still rather backward in our country, even if we were among the first to recognize the need and establish a system of follow-up of childhood cancer survivors. Those who do not participate are the ones who need the help they refuse. They still carry the seeds of fear, which they can only get rid of by opening up and welcome the help we are offering.

Some parents are overprotective. This is often revealed at the first visit to the Institute of Oncology, where the former patient is treated as an adult by us. The transition from the pediatric to the adult oncological follow-up is supposed to help the process of growing up. It happens, that the little patient grows quite attached to his pediatrician, or the other way around. With the first survivors whom we invited to continue their follow-up as adults at the Institute of Oncology we also met with resistance from our colleagues, their pediatricians. «These are our patients, after all« is what we heard. Also, informing the children that it will be necessary to have periodical check-ups throughout their life was not a simple task. «After all, we have to tell them at some point that they are cured«. These attitudes continue to this day to some extent. Considerate and understanding parents were of great help here. The Dutch Society of Parents with Children with Cancer wrote and gave out a booklet, rich with illustrations and testimonials by the sick children: «Surviving Childhood Cancer – All is Well what Ends Well«. This booklet helps the children and their parents to be aware of the need for, and the benefits of medical follow-up even after the disease itself has been conquered. We have translated it to Slovenian, some good people helped to publish it and it is now available in Slovenia too.

**Marjan** was treated for leukemia when he was eight years old and was followed-up at the pediatric clinic until age of 19. He was then invited to our clinic at the Institute. One month before that was his last check-up at pediatrics. There he asked, for the first time, what was the disease he had been treated for eleven years ago. Naturally, our invitation to the Institute of Oncology made him think, he knew that cancer is being treated there. He did not convey any specific problems or complaints, everything was OK at home as well as in the school. His mother was with him. We couldn´t find much wrong with him either, the psychologist, however, made this report: **«Agressively suppressed emotions with mild depression. Yearning for independence, probably frustrated by posessive mother – this could be linked to his inertia and his seeking dependency.«**

We did warn his mother to »lay off« a bit and let Marjan grow up. As far as we know, all was well in the end, Marjan is married, has children, they both, he and his wife, have good jobs.

Miha was a baby of 5 months when treated for a malignant tumor in his spine, he was operated upon and irradiated. The disease as well as the treatment have left him with numerous problems and disabilities. He had to undergo repeated surgical procedures during following years for correction of his legs, still has an abnormal, difficult walk. He also is small, because his spine did not grow at the normal rate, due to radiation. He graduated from the university, is extraordinarily intelligent, gregarious, keen to help other survivors of cancer and has made many friends among them.

But how did his mother take it?

**Miha** was 16, when he accepted our invitation. He came with his mother, who clearly showed, at this first visit, that she has not yet recovered from all the adversity of her child's illness. She told us that the doctor who was to treat him with radiation, had told her that her son would die, which she did not accept and insisted on his treating the boy. She stresses the fact it was she, who saved the baby´s life. If she believed the doctors, Miha would not be here to-day. She followed and supervised all the procedures done to reduce Miha´s disability and is still mistrusting. The bond between mother and son is, of course, still very strong. I once made a mild reproach to that extent, but was at once corrected by Miha, «It is not as you say, my mother is not like that, she is giving me full freedom. «Very likely, I really did not correctly evaluate their true relationship, probably under the impression of their first visit, which had not been very kind on us doctors, justifiably so. In the 70's there were few doctors, if any, who believed that a baby with that kind of tumor could be cured.

Later on we became friends;we have met often at our charities as well, where the mother was of great help. Once she told us: «It all happened in one afternoon, when he was 5 months old. Within two hours, from one diaper change to the next, this baby was healthy and then severly ill. When, after his two-hours sleep I removed the diapers, his legs fell like two chunks of dead meat. I panicked. What to do? Where to turn to? My first thought was the pediatric clinic. The examinations went on and I was wandering along those hospital corridors like a lost soul, not knowing what to do with either myself or my baby. Those hours were as long as years. A (female) doctor made the diagnosis early, a certain malignant tumor in the spine. She was not believed; of course, at that time there were only some 5 cases like that reported. Surgery should give the final answer, and did«.

It is not easy to put into words what the parents of such a baby must go through, during the diagnostic process, after the diagnosis is made, through surgery and through the long time of reconvalescence. Other children have quite often been cruel toward Miha on account of his »Chaplinesque« walk. This shook off him like water from a sea-gull-He is a strong character, has always been a fighter. He posesses an inner strength, which he sometimes has transferred to me as well. He always came back from defeat, persisted, striving again and again, after each surgery.

Miha has a brother who has never been seriously ill, but who also, in his own way, went through all the twists and turns of his brother´s illness. Even today he feels neglected within his family. Now, as an adult, he understands, while at that time, as a child himself, he did not have an easy time. Their mother says that Miha, being a sunny kid by nature, has always been a joy to have around, while this was not always true about his brother, who was 3, when Miha fell ill. Miha himself says, that his brother at home never enjoyed the true love and care, since mother was preoccupied with him, his sick baby brother. Miha is quite aware of that, especially since his brother still reproaches him at every opportunity: «You always receive more than I do« although this not so.

»The worst thing is when your child is seriously ill and this happened in our family«

Thus begins a letter by a mother, who, even after her child´s completed cure, was not out of trouble.

»When my son Branko was 9, he often complained of pain in his leg. I took him to a doctor, who told me these are growing pains, many children have them, the bones are growing bigger. I had a different foreboding and therefore persevered until, finally, the diagnosis was established. Horror! A veritable calvary began: radiation treatment, chemotherapy, and when in trouble, you look around for help. After several years of treatment I asked our social worker for some financial help for the child. She refused, also refused his admission to school, since a child this sick cannot attend school and since it is my duty to take care of my own child. Finally we had to go to court, which ruled that the boy is mentally fit and should to go to school, with the governement's help. He graduated from high school, with a lot of moral support from his schoolmates as well as his teachers. There were many difficulties, but with success after all.«

Later on, Branko´s tumor recurred and spread. His leg and a half of his lung had to be surgically removed. He is thus handicapped now, but bright and diligent, works with computers, capable of taking care of himself and earns his living. It is now 10 years since the last evidence of disease was removed.

Oncology for children in Slovenia.

It would not be right if I didn´t dedicate a few words to my colleagues, older and younger, that they so richly deserve. Therefore, a little about the development of pediatric oncology in Slovenia. It is about two institutions which had to co-operate from the very beginning – sporadicaly at first, but closer and mor systematic with time leading to eventuel success.

The hospital for children in Ljubljana started in 1865 and became part of University Hospital in 1945. Sub-specialty wards were being formed and in 1950 a young assistant professor, Dr. Majda Benedik, focussed on treatment and research of childhood cancer and hemophilia. A department of pediatric hemato-oncology was formed in the early 60' with her colleages Dr. Nasta Mihevc, a pediatrician and Dr. M. Žemva, a biochemist. The Slovenian Center for hemophilia grew from this in 1967, with a central registry of all patients with congenital blood-clotting disorders. Slovenia being a small country (pop. 2million), there is close co-operation between pediatricians of all sub-specialties. The pediatrician-hematologist, who treats cancer, often leukemia, is also involved in other blood disorders. The department of pediatric hematology also closely co-operates with related specialists like radiation oncologists, pathologists, cytologists, surgeons. These latter are mainly working at the Institute of Oncology.

The Institute of Oncology is the central, and only, cancer hospital in Slovenia, providing treatment, teaching and research. It was established in 1938 by Prof. Cholewa and had 28 beds at that time. Since 1945 the scope of surgical interventions has been widening and a separate surgical ward was created with surgeons dealing exclusively with cancer. In 1955 radiation therapy separated from surgery and with the first board-certified radiation oncologists (my late colleague Dr. Danica Žitnik and myself), this specialty was established. At about the same time Dr. Božena Ravnihar initiated the Central Cancer Registry for Slovenia. Reporting and follo-up of every cancer patient in Slovenia was obligatory. From the very beginning, the mode of work at the institute was multi-disciplinary, which formed a basis for future research and teaching. From these beginnings, the Institute was established in a 200 year old barracks (now Building A). It has grown into a 300 bed facility with surgical, medical and radiation treatment teams, own specialized pathology, cytology, radiophysics, isotope, imaging and data processing departments. The Center for Pediatric Hemato-Oncology was officially founded in 1971. The children are being treated both at the pediatric hospital 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 decades 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 tailored to the age of the little patient. There are movies and cartoons that present the disease concretely but in age approprate terms. The child can get involved by rooting for the positive side. In the case of leukemia, for instance, he can take sides in a cartoon battle between good and bad blood cells. When, however, the child is capable of understanding the reality, he is best treated as an adult. Here we are probably still making mistakes, the children often being more adult than we assume. We are also often wrong because of our own discomfort. It is not easy to tell anybody, least of all a small child, how seriously ill he is. Different tools for help and explanation are just that, nothing can really replace a warm, friendly conversation, with a hug by the doctor, reasuring the child of loving care and safety. The nurse, who spends much more time with the child than the doctor, doing the »dirty work« of sticking needles and such, and is the central person on the ward and sometimes a mother surrogate. She is in good position to explain a lot of things. The mother, too, has to know the truth. She must be made to trust us and will probably find the best way to bring the truth to the child. But where is she to find the strength to do that? I am telling these mothers that that is a part of the treatment, that this is their part in the process of the childs getting well, that it is a difficult task which has to be done and is just as important for the final outcome as the doctor´s skill and the medication´s efficacy. Perhaps co-operation in the treatment will help them to get rid of the feeling of being useless and insufficient. Sincerety helps to reduce future emotional problems and makes future decisions about treatment easier. There are some who take a different view; revealing the whole truth may lead to depression. Our experience points to the contrary, it has shown that both the patient and the parents cope easier knowing what to expect. When not facing reality, the child is more prone to feel stygmatized in to retreat in isolation.

It is more difficult to leave the necessary decisions entirely in the hands of an adolescent. It does happen that an adolescent patient refuses treatment of recurrent disease. Even if a 16 or 17years old is capable of making independent decisions about nearly everything, he still often lacks the worldly wisdom to appreciate the consequences of his decisions. This kind of situation is most difficult for all concerned. The doctor´s duty is to find out the reasons for the negative attitude and convince the patient to co-operate.

Marta found out about her disease from the file, but apparently not enough about its nature. Even though she probably did not imagine it was anything good, nobody came with an explanation and she did not talk with her mother about it.

What then, if the parents don´t want to tell their child the truth? Then we explain to them the benefits of being sincere and of all the negative aspects of witholding the truth. We have no right to force the matter on the unwilling parent, of course. But we should always explain clearly, what we know about the disease and the treatment. Involved explanations with lofty words are of little use in these conversations.

Early retirement?

**Ivan** had his left eye removed because of a tumor – retinoblastoma in 1965, when he was 2 years old. He presented at the Institute of Oncology in 1986, already 23, preparing for plastic reparative surgery and seeking our opinion. Ivan has two sisters and a younger brother and is on good terms with them. He is doing well at school, his social life is OK. He had studied sociology but did not graduate, for lack of interest. He is playing contrabass in a jazz band. It looks like he is well adjusted and, except for the absent eye and the surgical scar, we find no physical abnormality.

He was operated upon and provided with an eye prosthesis, with good cosmetic result. Additional examinations revealed no ill effects of treatment, he came to follow-up only rarely, had to be repeatedly reminded. He showed up in 1995, had now a consort, pregnant with his child and they are both **concerned that the child might inherit his disease.** He has no other health problems, just the hollow eye socket. Concerning that, we talk about possible plastic surgery. I also explain that it is unlikely that his form of retinoblastoma would be inherited, since there is no history of it in his family. Unfortunately, a chromosome test of his tumor´s cells cannot be done because many years have passed since his surgery in Zagreb and the specimen is unobtainable. Even so I suggest an early consultation with a pediatric ophthalmologist after delivery. Ivan again accepts an invitation to a follow-up visit; when seen he is healthy and so is his three and a half years old son.

He works with a musical publishing house, is satisfied, just easily tired when working with the computer. But he is not really enthusiastic about his work, even if rather capable. He wants to talk to our social worker **about possible disability pension.** I told him about a blind musician I read about, who didn´t consider himself to be an invalid and, on the other hand, a blind housewife who did.

The clinical psychologist concluded his testing of Ivan with this: **«Intellectually high above average with somewhat rigid thinking processes. Evidence of pronounced neurotic inhibitions with consequent diminished ability to cope with problems of daily life and with narrowed life-space«.**

We try not to be too lenient in such cases, considering the waste of such a talented young man not finding his place among the usefully employed. Generally, we urge them to work. It is not impossible that Ivan would somehow succed in his quest for a disability pension, since »he had cancer, after all«. But we are fighting against forced early retirement for these young people, which readily happens in these days of high unemployment. The parents also sometimes push these »children« into retirement, seeing there a guarantee of sorts against their own future inabilty to provide for them.

A while ago I was trying, with the help of social workers and our ministry of work and family, to analyze the data on our former patients – how many are needlessly retired, how many are able and willing to work. We have no answers, this being »unnecessary work«, who is going to do it and who pay for it? Though such an analysis would probably save money in the long run, there is no funding for it at this time.

»Only now I know that all this really happened.«

(Zejna, 1998)

Group meetings

Our experience accumulated, but so did our problems. We were now able to help the majority of our former patients with their physical late effects of treatment, alleviate or even cure them. We were not sure, however, how to help them with their emotional problems, which have turned out to be the chief obstacle in their taking their proper place in Society, in school, at work, in short – in life. «Scientifically« (objectively, with psychological and intelligence testing) it was rather clear that most of them were unable to use fully their at times quite high intellectual abilities because of suppressed emotions, shyness, depression, tendencies to isolation. I asked our clinical psychologist, who has been all these years entrusted with the difficult task of talking to them, testing them, evaluating the results, »what now«? Do we know what is permanently preventing these young people from achieving their proper place in the world. True, we have learned a great deal, but are we smart enough to put this knowledge to some use? How can we help them now, when we have wasted so much time being ignorant? Recommendations, please! »Well« said the psychologist«, and scratched his head »I can´t really help them. They have to help themselves. «But how? What he then recommended were group meetings of10 to 12 youngsters who have survived cancer. He has had experience with similar group meetings of adults who are, however, nothing like our »patients«.

So we started, joining forces, we doctors who know something about cancer and the modes of treatment, and the psychologist, who knew, what might go on at group meetings and how they can be made useful for those who participate. Our nurse joined us as well; she knew most youngsters from having taken blood tests and the like.

This being a bunch of people with many questions begging answers and problems begging solutions, we held our first meeting just in order to get to know each other better. We realized that the atmosphere we, the »experts«, would be able to create would be crucial for the success of the enterprise. Our atmosphere should make the participants feel safe and dare to talk frankly. Each former patient should have the opportunity, and the courage, to tell himself and others: «I have had cancer and now I am cured«. This »confession«, spoken loudly, should relieve the burden of secrecy most have carried troughout life to this point. Once accepting the reality, it will be easier for the patient to deal with it and with problems still in store for him. The meeting should also demonstrate that nobody is unique and alone with his trouble. Each is sharing them with a lot of others, many of them present at the meeting. We began our work in the hope that the youngsters would speak about their social problems, their anxieties, their fears. They could exchange their experiences with the hospital, the doctors and nurses, treatment, parents, friends, school-fellows.

All this should help them to become more independent and easier to get on with their lives. We were pondering on how how to make the best of it and, whether it is at all possible to be of some real help in this way.

Here I was reminded of a story I heard at a meeting dedicated to children-invalids of war and their human rights. The story was told by a psychologist, talking to Bosnian children about the horrors of the civil war there. There was this 12 years old girl, both her parents, a brother and two sisters were killed. She refused to talk at all, after several weeks of gentle persuasion. She was quiet, depressed, hovering in a corner of the room, never went to school or even out on the street. When she was finally able to describe the bloody events she has witnessed, she said: »Only now I know, that these things really happened. «After a few more days, she was back at school.

We have to walk through the fire,

be wounded somewhere and bleed,

to reach the murky bottom,

to grasp the essence of it.

(Ivanka Glazer, Glitters in the Twilight, 2002)

Notes from our group meetings.

I am leafing through the notes of our first group meetings. Eight years have passed since then. We had invited 13 youngsters, 10 accepted and came rather regularly from then on. I know all of them well and we have become good friends. We first introduced ourselves, who we are, what we are doing and they all told, briefly, something about their experience with their disease and with the treatment. Here, at the first meeting some of the issues surfaced already, we later debated in more detail. Naturally, some of the attendies were more talkative than others. They were evidently pleased with our first meeting and I don´t think only with the snack, provided by the Institute of Oncology and organized by our nurse Janja. They all came back next month, they were waiting in front of the building, talking animatedly among themselves though they had not known each other before. Good mood and curiosity was in the air, expectations of what to-day's meeting would bring. It struck me that they are looking forward to seeing each other because it may have been the first time for many of them that somebody listened to what they had to say. The first time that somebody showed interest in their experience, troubles and thoughts. And, they have already overcome something, at the first meeting: the fear of public appearance. Clearly, most have been somewhat embarrassed, when their turn came to tell their story. At the second meeting we discussed several problems, «labelling«, as one of them called it, among others. Mostly, labelling has been a negative experience for them, people avoiding their company, some of them being forced to repeat the driver's test each year. Dragica was refused a driver's licence, she didn´t know why. We agreed that our psychologist would make inquiries and, hopefully, clear the matter. For some of them it was something positive, it translated into «favoritism«. For instance, they were freed from gymnastics at school. But they all were of the opinion that »labelling« is unjust and wrong. Bojan had no such problems. He surprised us all: «I think my inner development (here he poins to his heart) is retarded, I am not grown-up in that respect. «He admits to some problems even before he fell ill, has always loathed shopping or asking for assistance, has always avoided people as well as public places, but thinks that this weakness of his has got much worse with his disease.

He also told us that he would like to join the army, since »otherwise I am not a man«. Jaka protested strongly to that and gave a short lecture on the subject: «Manliness is not just physical strengths. Jaka mostly held the podium. He lectured us on his opinion that »nobody is perfect and we all need more education«, was greatly admired by his male peers, and also told us about his successful job »selling vacations«, trying to sell some to us on the spot.

We had some words about possible **partners**. Tomi confided to us that he has a serious girlfriend. We asked whether the girl knows about his childhood brain tumor. Yes, he had told her and it did not influence their relationship, but he had been a bit shy in the beginning to talk about his disease. He had had an unpleasant experience with his first girlfriend, who left him after being told the story. In his opinion, that girl was too young and not serious enough and he heard from us that such a thing can happen to anybody, any time. «Without unfortunate love, there can hardly be a true love« was Jaka´s comment.

Everything looked rosy at first, especially with Jaka, who, however, was the first in trouble. He really staged a drama for us.

**Jaka** is a wild duck. He was 13 when first treated for a brain tumor and was 26 when he joined us, was already divorced but had a son. Our psychologist wrote after first interview. **«He shows a pronounced wish to be noted and, especially, to be warmly accepted«. Five years later, he added: «He is also sly, hostile and aggressive«.**

Jaka was obviously comfortable in our group. He asked for help with his small attic apartment, which he had obtained with our help to begin with, but was in need of painting and heating. We promised.

At our fourth friendly meeting we were talking freely and friendly, when Jaka burst in, waving a newspaper that accused him of a crime. Naturally, he was again the center of everybody´s attention. He explained that there was a fire in his apartemnt and that the whole house burned down. The paper also reported that Jaka had behaved aggressively and was conducted to the police station in cuffs. His former wife testified that Jaka poured gasoline around the apartment and set it on fire. Then Jaka vividly told his side of the story: «alien powers were at work«, he spoke about rays, light, voices, less and less coherent or convincing, which he finally realized himself. Finally he asked for help in being admitted to the psychiatric hospital. ´While our psychologist considered him basically sane and responsible for his actions, we others all took Jaka´s side. All the youngsters expressed a strong wish to help him. We were all asking ourselves to what degree Jaka´s tumor contributed to the events and to his losing control of himself. We were sure that even though he might be responsible, there were certainly mitigating circumstances. I promised to have a talk with the psychiatrist on call at the hospital. He was examined the same evening, admitted to the psychiatric ward and treated there for several weeks.

At our next meeting Jaka once again dominated the conversation, naturally, telling us all about how he has been »in custody« in the closed ward, which he, naturally, didn´t like at all. He now lives with his mother so that his sister »has to sleep on the floor«. He would like our help with another apartment. He is on five different pills because of his nerves, the case in court against him is still pending and he would prefer going back to the hospital. Three apartments had been ruined by the fire, but Jaka doesn´t feel guilty, though he had a few beers that night and »lost his compass«. His wife has promised to testify, that he could not have set the house on fire because the matches had been taken from him before that. He would not be able to stand the prison and would rather take his life. Surely he is in dire straits now, also without a place to live. Again he would like an attest that he needs a place with heating and warm water.

In spite of all this Jaka still came to our meetings that year, silent and depressed, explaining that he is »full of pills«. He is still in the closed ward of the psychiatric hospital, feeling »lousy«, not seeing any sense in living on. He is still due to appear in the court of law. Well, finally, with some help from our side, things have settled down a bit, he even moved into a new apartment and calmed down a lot.

Alas, other problems emerged. During the past few years he had to undergo three surgical interventions for recurring tumors on the membranes of the brain, the consequences of previous irradiation. Even if the tumora are not of the malignant variety like was his »original« one, operations are not entirely harmless. Furthermore, there was also a tumor in his thyroid gland that had to be removed, not cancer but still. Thus, Jaka was busy with his health and treatment, seeking also our help and support. Each year he took part in our rehabilitation program in a spa, with a group of our youngsters. We have been quite busy with Jaka. He certainly needs our help with all his problems, including those with his health. I have to add here, that we are not doing this out of pity alone, Jaka can be quite charming in his way. In spite of his poverty and his problems, he has always appeared with flowers for me, or for nurse Janja or for whoever was on duty at the time. He is somewhat special, also holds a special place in our group, not only as a patient, but as an old friend. In spite of everything he has our respect and this is his doing more than ours. If he is sly when necessary, we don´t feel it when he brings flowers, we are always glad. Undoubtedly he needs us. Can you imagine how he would fare without us, doctors and friends and fellows encouraging him at every crisis, of which he has had several each year. Certainly he is better understood here than in his own milieu, no doubt that here people are more tolerant of him. Jaka is a personality. Knowing him and living with him we, as well, have changed a little bit, are perhaps a little more tolerant, uderstanding, positive, because of his experience. And this is one of the aims of our meetings. As always, Jaka has played the main role also in this report about our meetings.

And how to go on from here?

After ten meetings of our first group and when the year was nearing its end, questions arose again. What now? We cannot just continue with this small group, when we have about five hundred others, also in need of such meetings. We cannot invite all at the same time, either. It will have to be done gradually, a new group of ten to twelve each year. It will be slow, but the best we can do. But what to do with the first group? As nicely tuned to each other as we have became, it will not be easy to say goodby. Can we just say: now we are through and good luck to you? Impossible, since we now know the advantage of these meetings. We were convinced that somehow we ought to continue. And again, a »good fairy» came to rescue. I spoke about our experience at a meeting and a colleague, balneologist, stood up: «I would like to help these youngsters. Let us talk about them continuing their rehabilitation at our spa«. And so it happened. They went to the spa, all twelve of them voted »yes« at the last meeting, but all could not make it, a wife was sick, another trip was planned before, so the group was incomplete. Nevertheless, it was a success. Mary, for instance, had never before been on vacation, much less in a disco. Everybody was happy with the program, swimming, cycling, dancing and generally having a good time. We met back at the Institute after they returned and could register their satisfaction. Together we concluded thet the goal has been met, that the meetings were of considerable help and that the best of all was the group vacation at the spa, where they became much closer to each other, real friends. After this year a lot has changed in the lives of these youngsters. Their self-esteem rose, they helped each other in many ways, they coped better. They now knew very well, that in us and with us they will always find friends, willing to help. We decided to continue with the routine group meetings through the year and wrap it up with a vacation in a spa for ten days of rehabilitation and consorting. That would be our future »model«.

Each year a new group is »formed«. Up to twelve youngsters are invited, mainly

those with whom we already broached the subject during their visits at the Institute of Oncology. Some, with jobs already, living far from Ljubljana, were skeptical, even as they expressed the wish to participate. Others were prevented by their school. There were also some, who said, up front, «I am not interested«. Unfortunately, those were sometimes the very ones who could benefit most, or so we reasoned. This was especially likely to be the case in those, who did not wish to be included in the follow-up program. Sometimes this was refused by their mothers who did not wish for either themselves or their »child« to be aggravated by visits to the Institute of Oncology. They wanted to forget, but, as I have said before, it is not so simple to just forget whatever was bad or painful in early childhood, it is our reality, our experience. These wounds heal better in company, even if sometimes they heal on their own as well. Nevertheless, each year a new group has been formed, this year we are organizing the eleventh one. We are convinced now that these meetings benefit us as well as our young friends. We still get surprised by the wisdom of someone's reflections concerning his experience with the disease, treatment and the everyday life afterwards.

Some of the youngsters from afar are still driven in by their mothers, who may also provide us with insights. The mother of our Branka, for instance, said: «Branka is another person since she is going to your meetings. Before, she did not budge from home. Now, she has friends and a job«. Branka is quite handicapped by the disease. Extensive surgery has left her without one eye and with an asymetrical face. She acquired friends within our group and truly changed her life. She is abroad at the moment for plastic surgery which in the past few attempts was not very successful. Let us hope it works this time and that her improved appearance will help her to lift her low self-esteem.

A letter from a mother: »What I have learned from my daughter«.

Since the success of our meetings is not easy to evaluate (with tests, numbers and diagrams) other than subjectively – and prone to bias – here is a letter by a mother about the effects of our meetings:

»Addressed to you, but aimed at all of you who took part in yesterday's meeting and conversation.

What I have learned at the side of my daughter is that improvement comes in small steps and that one may have to wait for years. You probably didn´t think that yesterday's yield was great, but in my opinion the change in Jana was such that it outweighed the quantity. We, Jana and I, talked late into night and she was happy and smiling just as before her illness. You need time, lots of time, to muddle through this and to see something ripen within yourself. We have been talking for two years, angry at times, disgusted at others, with her under the impression that nobody likes her. Finally, that doctors are human, that a fresh outlook is necessary and mainly, that nobody wishes ill to anyone else.

Perhaps we go through different stages at certain ages. This can cause doubt and difficulty all around us, yet we overcome these once we mature within ourselves, sooner or later, when we cease forcing the issues and become tolerant. Jana will still need me at times, to listen to her and to exchange some ideas, but she has struck out on her own path which is agreeable to both sides. Children can never learn as much from us as we can from them and you, having to do with so many children, will come to know many wonderful worlds. I wish you all pleasant and fruitful conversations and to each of you a pleasant and nice day, full of small joys. What you are doing is right and worth the effort.«

We continue to meet ...

Each meeting opened some new »topic«. The experiences conveyed by these young people were doubtless unique. Some of them have been emotionally enriched for life by their growing up during their illness, their relations to doctors and nurses, to their families and their new outlook on life itself. Others have been suppressed in their ambitions. It is up to us, the »experts« to sort these things out.

We have discussed on several occasions the **relations between brothers and sisters.** It was mentioned, that their siblings felt, well into adulthood, to have been »sold short«. They say »You always get more«. Ana, a twin, spoke about the problems with her mother and her twin sister Jana. This sister enjoyed quite a bit of attention from the doctors since, as a twin, she had to undergo a series of tests herself«and all that on account of you«. The twins are unlike each other, Ana is more subdued and has always been in the shadow of the more vivacious Jana. She didn´t want to go to the same high school as Jana »just to be rid of me«. They also pursued different courses at the university. Still, they are good friends now and Jana says she knows she was dominant and »horrible« towards her sister.

**Iva and Lina.** In one of the groups we have had long talks about »being different«. Two young women took part. Both have had an eye removed because of a tumor, one at two years of age, the other at six. Here it began: Iva, the first one, maintained that the loss of an eye is actually of little bother to her, she has been like that since she remembers and cannot imagine herself any other way. She has never permitted it to be said that she is somewhat inferior. Her being different she blames more on her family circumstances than on her illness. She was unwilling to talk about her family, but she refers to herself as «being different» when talking about her voluntary social work and people she meets there. Through this she also received a scholarship to a summer school in the USA. The candidates had to write an essay about themselves and she turned in a rather good one. On her returning from the States she had a lot to tell about the school, colleagues, teachers. She continued to be good at her studies, though, when in difficulty, some emotional problems could be perceived.

Lina is totally diferent from Iva; depressed, shy, lonely, unhappy and very angry. She is bothered by her looks, saying that people are **«pointing their fingers at me«**. When quarreling at her work, she remains angry the whole day and night. When they have forgotten it all, she is still angry with her co-workers. «I could bite through their neck«. At times, she withdraws for a whole month. To-day she is cross with her father, who mentioned that he might not be able to pick her up after our meeting. Her father lets her use his car though she is shy of driving ever since she almost caused an accident. She is sure she will never be a good driver. It was like that in the school, too;she did pass the tests but was convinced that she knows nothing and relied on cheating.

She is past twenty now, has not been able to enter into closer relationships with boys, who, on the other hand, seem to be quite interested in her. She cannot accept her altered looks and would not believe that a man can accept her as she is. She does not dance, does not like »the crowd«. She did go to a dancing school for a while, but »was always afraid that somebody would actually ask me to dance with him. So I quit«. She hopes never to fall in love, if she is physically attracted to somebody, she does not want to see him any more. «How can I believe that somebody would like me when I myself think I am ugly? «. Iva, on the contrary, is quite pretty, the artificial eye is hardly noticeable.

Iva has always cheered her up at our meetings and Lina still admires her for it. Several years have passed since these meetings, we see Iva only rarely while Lina still takes part in our activities, has friends from their rehabiltation time at the spa. We have met a few days ago. «How are you, Lina? « »Better, thanks, since I have made friends in the group meetings and camps my life has turned around 85%«. Who would not be glad at such an answer?

The problem of **infertility** , which we have found in over 60 of these former patients, three times more often in males, has not been a frequent topic at our meetings. But in the same group, where Lina spoke about her appearance which caused her so much uneasiness, a boy who had been found to be infertile, tried to console her like this: «You will have children and look at them, even if only with one eye. I, on the other hand, shall never see any children of mine«. A young woman, survivor of ovarian cancer in childhood, was reconciled with her fate. Mildly embittered, she says that at first the idea she never could have kids of her own was very difficult. It is better now, her husband has a son from his previous marriage and, after some intial problems, they are a relatively happy and understanding family. Her stepson is quite attached to her, calls her »mami« and turns to her more often than to his father.

We talked a lot about **social problems, environment, school, jobs**. Those, treated during their schooling, had been mostly bothered by the loss of their hair. How did their schoolmates look on them? The experience varied a great deal.

**Betka** , now aged 22, found it most difficult to »re-enter her life, having been stricken with cancer when just entering life«. At the completion of her treatment she was between grammar and high school, she didn´t want the company of children, who were often impudent, even cruel towards her. The loss of hair shattered her, who was so preoccupied with her looks at the time. She avoided being looked at. Her life was totally changed after her leg had been amputated. «I can´t wear minis or shorts, am always in slacks, hiding my leg around the pool, cannot indulge in sports. By missing two years at school, I have lost a lot of friends«. Betka feels inferior. Asked why she has not yet married, she says that there is no problem to establish a contact, but that she finds it difficult to maintain a longer relationship. **She is constantly afraid of marrying and having children.** She doesn´t want to complain, knowing that everyone has his own problems, but she does add that she has often pondered how it would be if she could lead a »normal« life. Her self-confidence is strenghtened by the fact, that she is able to work, to help at the farm, to drive , to feel independent.

**Aga** , had a similar experience when she returned to her school without hair. For her wig she was mocked mainly by the younger students. But everybody knew she had a wig, her girlfriends were avoiding her, probably afraid of catching the disease. **Mare** felt »rather weird« when back at school. Everybody knew about his illness, having been told by the principal. Himself, he couldn´t add much to that, because he didn´t know much.

**Nena** , aged 14, returned to the school one month after her tumor was removed. While nobody around her spoke about her affliction, she was under the impression that the whole valley knows and that many have already »buried« her.

And what did **Rina** have to say? She is angry with the doctors, who had deemed unnecessary an operation that would make her taller. Her parents support her wish. Treatment for leukemia, at the age of 4, left her small, surgery could add some 2 inches to her size and the doctors refuse. Her mates are asking what would be different if she became a little taller, what is actually bothering her. Everybody knows somebody smaller than himself, one of the female doctors blushes – she is no taller than Rina. Driving a car is a problem for Rina, she can barely see over the wheel. The worst is to be called »the little one » at her job. Nobody was really moved by this there is another girl in the group, called »the little one» at her job, a bit taller than Rina and not resenting it at all. But Rina cannot be consoled to-day. We also find out that Rina was angry with her mother for allowing her to be treated at all. Here, others agreed, many of them have gone through such a phase. Finally, Rina enforced her will, was operated upon and became taller by 2 inches. There were post-operative complications, she was on crutches and in rehabilitation for quite a while. She is fine now, happy, has a full time job. With some luck, all went well. A surgeon does not decide easily on an intervention if he doesn´t see the need, there are too many possible risks. In this case, however, we have to admit that Rina was right.

Everybody agrees that it is easier to talk with somebody who know the disease or has been afflicted himself. It is more difficult with »outsiders« who don´t really understand. **«They don´t ask much and they actually listen even less.** « The boys especially miss being able to talk to girls, they say they are afraid of talking »about these things«. Here **Mate** smiles and mentions the biology lecture at school with a seminary on leukemia, held by a friend of his. Leukemia is an incurable disease, they were told. He thought about speaking up against this nonsense, telling them he himself has been cured of it, but decided to hold back, they wouldn´t believe him anyway.

This very group demonstrated how these youngsters form bonds between themselves, based on common troubles and, how they can influence each other by exposing their problems. One of them mentioned his chronic fatigue and all of a sudden we found out that many have the same problem at times. We have »aired« many a problem in this way and made it less severe.

Many have **problems in the job sector.** One told us that even by mentioning his childhood disease made him unacceptable for most kinds of employment. Right now he holds a temporary job. He was also pronounced unfit for the army. On that occasion he was overwhelmed by questions – why? All his friends were enthusiastic about soldiering, some even wearing army boots prematurely and dreaming about it. So, being »unfit« was a calamity. Thinking about his disease he began to feel inferior. They imposed on him some limitations at the job exchange office, which makes it more difficult to find a job, he is regularly turned down after interviews. Meanwhile, I can attest that the boy is in good health, without evidence of disease, has learned to be a precision mechanic with a degree. We shall be able to find him a job, but why all the obstacles?

Andrej didn´t bother, when he was declared »unfit for the army«, his friends envied him and he was quite happy about it.

Our participants returned, time after time, to conversation about parents. Betka thought that her mother has suffered more than Betka herself: She had lost her husband early, remained alone with four kids, one of them severely ill, and a small farm. Betka admires her for coping with it all. She remembers her mother just crying at her bedside after surgery. At that point she wished her mother would stop visiting for a while. Her mother is still too anxious and pessimistic and so is her older sister, who also overprotects her at times. Everybody has been intruding into her life too much. When Betka broke up with her boyfriend, for instance, everybody was at her, why did she do this, not understanding at all.

Neva, too, has similar problems. Her mother does not want her to have closer contact with boys, afraid it may be harmful to her health.

It has been mentioned, that the protective role mothers played was limited to certain areas. Working at home, cooking, cleaning and such, the girls are left to be independent, but not when it comes to boyfriends. There are fewer talks about these things with their fathers, »who are even more afraid then the mothers«.

They are also telling us about the difficulties with growing independence. Mare was in constant conflict within his family until he moved out and went to high school in another town. There are no more quarrels now, he only visits for weekends. Most of them yearn to be more independent, to move away from their parents. At times, one or the other makes it for a few months if he lands a temporary job, but it is not easy: they are too used to the parents always being right and to accepting their judgement.

How come that I survived and others did not?

Children who have been treated for cancer will always know other children, who have died of the disease, among them perhaps some newly acquired friends. How will they deal with this, how will they avoid feelings of guilt? Why have I survived and he did not? Questions, asked by all of us, who have survived an accident, fatal to others.

We talked about this within a group, facing recurrent disease and then death of one of the boys who had been a regular member. To avoid such disasters we, as a rule, start with group meetings only after at least 3 years after off treatment. However, there is always an exception. A boy joined the group much sooner, because his cousin **Setka** was already a participant – a survivor of leukemia – and they were from the same town far from Ljubljana.

They were late at the first meeting, shyly set down at the far end of the table, did not speak, just listened. Setka introduced her cousin, Rok, who also fell ill with leukemia 10 years ago, he was 14 at that time, then 4 years ago the disease recurred and last year recurred again, this time he received a bone marrow transplant. Being an adult now, he has been hospitalized on an adult ward. When we got to know each other a little better, he became quite talkative. He didn´t like it in the adult ward, much preferred the pediatric hospital where everybody knew everybody else. Asked how he coped with the disease recurring for the second time, he just said that the treatment was easier to take this time. What bothered him was one month in isolation. We did not ask him about his present concerns, fears and anxieties. There would be time for that at following meetings. But there was no time, the next meeting was already about preparing the group, including Rok, for the spa. We also had to talk over the usefulness of our meetings, about the participants´ point of view, their numerous comments. Some were of the opinion that there is not enough talk about their disease, that too much attention has been paid to their general problems in life. Other than that, they were mostly positive. Evidently the year has been too short, a lot of topics were discussed only superficially. Still, meetings for this group had to come to an end, they were invited for the last meeting after their 10 days group rehabilitation at the spa. We were interested in the effect of this sojourn, would like to hear what they had to say, we were still accumulating experience.

At this meeting, one month later, we wanted to hear their opinions about the rehabilitation program at the spa, what was wrong, what they liked, what could be made better. Right from the beginning we sensed that some strong bonds had created among them, to the extent that they would hardly need our professional help any more. Which was exactly what we had wanted to achieve. Though they had invited us, at their departure, to pay them a visit at the spa they now said it was better we didn´t. They were able to be much more relaxed. It would be more difficult for them if we were there »out of respect» for us. They were happy and full of plans for the new term at school.

Late that summer, however, the news came that Rok died. We were afraid of how this would affect the members of »his« group. We invited them to meet and everybody came. How have they dealt with this? Would they again retreat into fear and anxiety?

Many psychologists have lately studied fear and how to cope with it, as there are so many places nowadays where people live in constant fear for their lives. These studies show, that sharing one's fears is the most effective remedy, the other being to laugh!

Some of them knew already of Rok´s death. Rado found out from our letter and thought it must have been an accident. Setka, of course, was depressed. She told us that Rok´s condition had turned worse in springtime, but had not been spoken about at home or with Rok´s parents. In spite of his being ill, Rok still studied, graduated from college and wrote a M.A.thesis. He liked to talk with Setka. She is sure that he was afraid of a recurrence all the time and she considered this wrong. Setka herself is not afraid of her disease, thinks more positively about it. But then she pauses and says: «Maybe he sensed what was going to happen«. And she also tells us that she had been »buried« by everybody when her leukemia became known. The belief is held in her region that those, »buried » this way, have a long life.

Rado had shared the room with Rok at the spa. They got along very well, meditated together and also held parties in their room. Nobody can really accept

Rok´s abscence, he was such a lively fellow, he was still dancing at his cousin's wedding in the spring, nobody had any thought of disaster. They all think of him as a happy guy, full of life and energy. Then they are suddenly silent, as if paralysed by the thought of his death, again seeing the ghosts.

There was much talk about funerals, funeral orations, as if everybody had already thought through his own. Rado shared some thoughts on this: «Your whole life is about how stubborn you are deep in your roots, whether you swim against the current or let it take you with it. A time span always comes to an end. Birth, death and rebirth are connected. People tend to turn a blind eye to their lifes´s brief duration. I am often trying to talk about these things with my mother, who, however, refuses and shuts me out. «Rado is of the opinion that he has lived, ever since his birth, «on borrowed time«, that each day is a rare gift to him. He agrees with an idea he has read somewhere, about one´s mission on earth: »If you are still alive, you have not fulfilled your mission yet.«

They all wanted to know about bone marrow transplants and, whether to tell the patient the full truth. So we spoke about that. The athmosphere was, I would say, natural all the time. I had the impression that these youngsters had already dealt with the idea of death and have accepted it in a more natural way than we, the »experts«, wh o preach that death is just a part of living.

Before we parted, we even had a laugh, when Rado said: «We all want to go to heaven, but, faced with the opportunity, we would rather remain on this earth.«

The friendships in the group are lasting, bound by the good and the bad that life brings to them.

Who will bring me a time of laughter and joy ,

Who will bring the spring for kisses,

Who will caress my hair and give me a bunch of sunrays for my birthday

When it won´t be worthwile any more

To wake up to a new day?

( Mia Skvarča. A journey through a nightmare, 1992)

Before there were group meetings and rehabilitation camps of the Little Knights, each of them was left to his own devices. Some have had a special talent, e.g. writing poetry. **Mia** had it and actually published a collection of poems. As an introduction, she wrote: »The birth of this collection marks the end of a long, dark period of living through a two-year tragedy, which at the time seemed to me invincible and hopeless. And yet, having changed my outlook on life and being totally prepared to face death, helped by the existential power of poetry, I was able somehow to extract from that Pandora´s box also a ray of hope, which has been waiting there for me. Victory followed, but not until recently has my ego been able to cope with the tempests of the soul, trapped in the chains of nightmares and bitter memories. Constantly encouraged by my friends I finally decided to let see the light of day the collection now in your hands. Enjoy it slowly and profoundly from the first poem, through depression to almost ridiculous agrresiveness of the following ones and to the final redemption of the last verses.«

One of her friends (Jože Šmit) wrote these accompanying words: «Poetry has helped her and she wishes it would help others as well.«

» **Petra** is a 18 years old girl to-day. At first sight she is like most other girls her age. Yet, Petra is enriched by a towering life experience – her struggle with cancer, which lasted over a year ». (Introduction to Petra´s Diary, 1998).

Petra has written a diary about her illness. At her friends insistence, this became a book. Petra there tells her story and ponders about the dark and the bright moments, about her friends, her boyfriend and about love. This also takes some courage. Petra has gone through the bothersome process of »diagnosis and treatment« more than once. She has lived through metastatic spread of her bone cancer, asking herself: »how can I live without a leg? And, am I going to die?«, when the cancer has spread. And, sure «Why me?«. Thus she frankly thought about most of the questions which plague most young people afflicted with cancer. I do believe that her »confession« helped her to get rid of the burden of her past and gave her the strength to go on living. I also believe, that she has conveyed this strength to many a youngster reading her booklet.

During the final meetings, they mostly talked about their own deliberations.

Here are some of those.

More than 80% of them feel different from their peers. Of these, about two thirds think they are better off, about one third that that they are worse off than their »normal« fellows of the same age. «Because of my cancer I am different from those who have not had this experience. I appreciate life better. I am a happy person, have no need of alcohol or drugs.«

»I understand better what is essential in life and am taking nothing for granted. I want to live my life in full. Having faced death made me look at life in a different way. I appreciate life and what it has to offer, day by day. I think it is most important to live to-day since nobody can promise me a to-morrow.«

One of the survivors has described his experience as »a lightning bolt during a storm. The stark light shows everything clearly, trees, roads, houses. «This sudden clear, quiet moment is ingrained in his memory.

Most of them are asking **»Why me?** «, another is saying: «instead of asking why me, you can ask yourself: «Why am I the lucky one, who is cured?« This fellow thinks of himself as the chosen one, who has fought to a great victory, is born anew and must be grateful for that.

»Something good can always emerge from all the bad, not only for us, who survived, but also for those around us.«

Have the group meetings been useful?

How have we summarized and evaluated our meetings? In one of our reports we wrote among other things:

One of the most often discussed topics was **stigmatization** , indicating the sensitivity and vulnerability of the young patient as well as prejudice within the Society.

Many former patients have problems in **the job market**. They are either considered unfit for work, or the employer is afraid of having to grant numerous sick leaves, or even recurrent disease. Some find it diffcult to fulfil the norms as they tend to be slower, less concentrated, more easily tired.

At times, friends and relatives avoid a former cancer patient, his family therefore **feeling different**. Most former patients are of the opinion that those who have not had their traumatic experience cannot understand their feelings.

Some participants have avoided talkng about their disease at home as well as in the company of others and are still asking: «Why me?«Some have never spoken about their illness at home, thus never had a chance to rid themselves of anxiety and some other negative feelings. Others have talked about it and have had some success, may even consider it a positive experience. They say that they appreciate life better and are more tolerant now.

The age of the child at treatment may be crucial for his further mental development. Those treated in their adolescence have tended to revert and to be more dependent on their parents. Our group is fixed on wish to be independent. A part of that wish is a car of their own. Many find it difficult to obtain a driver's licence, the necessary medical certificate, which also shows how poorly informed many doctors still are. Overprotection on the side of their parents is also often an obstacle to becoming independent.

Contacts with the opposite gender is a very important issue for them. Though we have not spent too much time on this during our meetings, it nevertheless came out that deep anxieties are hidden here and for this very reason there was not much talk about the subject. But the fact also surfaced, that many were helped by the experience of »those like me« and to the recognition that it is neither necessary nor healthy to avoid company constantly

We have also talked about **limitations and deprivations** as the consequences of their disease and treatment: inability to serve in the army, fear of radiation effects, fear of the disease recurring.

At the end of the year we could, by perusing our notes and some analysis, notice several positive trends within the group itself as well as in individuals: more spontaneous communication, more insight into their experience, better congruity between the reality and the idealistic perception about themselves, more mature emotional responses and more initiative. There has also been a marked change in their relation to the health workers. They all agreed that the fear of the doctors, of therapy, even of disease itself, has greatly diminished. Group rehabilitation in spas had a positive effect, most were satisfied and have adjusted rather easily. They had a good time together, many found new friends and most would like to repeat the experience.

Our experience, so far, with group work with young surviors of cancer, has shown that this kind of help is welcome and that it has changed the pattern of life for many of them. Their need as well as their ability to establish contacts has been enhanced.

Even as we hear a lot of positive things, some problems and worries certainly remain: fear of recurrent tumor or of some other serious illness, anxiety about their offspring. Meeting others who also have survived cancer alleviates these anxieties quite a bit, seeing that they are not alone, that they can share their troubles with someone. It is also very important for them to be aware of the fact that among those, who know about their disease, there is always somebody ready to help when trouble starts. This is another positive aspect of continuous follow-up and group meetings of these survivors.

Who is the hero, who the man,

Shaped by his misfortune,

The Little Knight is on his way,

Guided by his valor

(Marta Gorup)

The Little Knights, Foundation for assistance to young cancer survivors.

Thus it was agreed to organize group rehabilitation in a spa after a year of our meetings. It would make sense that this be a repeated opportunity for most, perhaps once a year, once every second year. Very well, but who is going to pay for it? Again, we were at a loss as to how to preceed. We have found a solution in establishing »The Little Knights Foundation for assistance to young cancer survivors«. Our first idea was to start a society, as these have been rapidly growing in numbers at the time. However, a chance encounter with a »benefactor«, Janez Hacin, a Slovenian architect living in Switzerland and heavily engaged in humanitarian organizations, produced the idea of a foundation. We took his advice, also his money for the obligatory deposit, took advantage of the new (1995) Slovenian Law of Institutions, which offered some security, and started to work on the foundation. This didn´t prove to be easy, it was virgin territory in Slovenia at the time. Again we have found a kindly soul in the person of Ambrož Koritnik, lawyer, who wrote our statute and saw that everything was in accordance with the law. Ambrož also found a notary public, Andrej Skrlj, who provided official confirmation. All this, naturally, without any money changing hands, they volunteered their time as well as their skills. We took it for granted, though, on reflection, it is not quite like that in to-day´s world. We are apparently just lucky always to run into one or another »man of good will« when we really need one. There would be no Foundation without them, nor most of the good that we are now able to provide for our young friends.

We have made another step forward, a considerable one this time. What should we name our foundation, what name would faithfully reflect its aims? Pondering, talking, suggesting, it was not easy. During a walk on Rožnik, the hill above Ljubljana, my husband Marjan »got an idea«. I have to admit that I mostly cherish his advice. He proposed the name »Little Knight«. This person from the litterature was not a perfect stranger to me, but I didn´t have a clear picture and was not sure how to connect it with the foundation. Marjan described the Little Knight like this: »Master Volodijovski is the hero of the third part of the patriotic trilogy (By fire and sword, The Deluge, The Little Knight) by Henrik Sienkiewicz, the great Polish romantic. The Little knight is of slight stature, average mind, socially inept, modest, not assertive; above all, he is unselfish. With all that, he deeply loves God and his country, as befits a romantic story, and is, besides, a genius with the sabre. For these reasons he manages to pull off a number of heroic deeds. He is only half aware of them, but they attract and stimulate others to do good and noble things. He himself is, of course, never visibly rewarded.«

This was enthusiastically accepted by the youngsters and they too, set to work. Aljaž produced some proposals for our emblem on his computer, the present one was selected unanimously.

So, the first part – »treatment and follow-up« and the second part – »group meetings« was supplemented by the third one – »The Little Knight Foundation«.

A board of directors was elected, the documents drawn to define the aim and the activities of the organization. This is what we wrote at the time, and is still quite valid:

The aim of the Foundation is:

To promote the reasearch on late effects of childhood cancer treatment in order to minimize these effects in the future,

To mitigate the effects of treatment in survivors, help them with technical aids, support them in pursuing an education corresponding to their abilities, To offer psychological and medical assistance and rehabilitation, also in groups, also in thermal springs, summer camps and alike.

The set-up of the Foundation

The Little Knight is a humanitarian organization, a corporate body within the civil law. It was founded in accordance with this law (RS.t. 60/95) by prof. Berta Jereb, Oct. 8, 1996.

The Foundation is managed by an administration pursuing its aims, all according to the law and to the statute, accepted Jan. 22, 1995. The Board has 8 members who elect a president from among them. A supervisory committe has 3 members, one of them presiding. Its main task is control over fund management.

The Foundation is funded by the management of its property at founding, by income from its activities and by grants, donations and state subsidies.

Each year about 50 children in Slovenia are afflicted by cancer. Each year the group of survivors with special needs and problems is increased by over 30.

We gave out a booklet with photos from Tivoli, Ljubljana´s Central Park, which also became our« trademark.«

We organize charities and concerts. It is at times hardly believable how eager some people are to help, especially the artists: none has as yet refused to donate his time and skill. A fond memory is of Mila Kačič, the poet, reading her poems, interchanging with Andrej Šifrer, the singer, in wonderful harmony. It was a joy. Andrej is still with us at times, also helped at a Christmas poetry reading – Tone Pavček with his own poems. So have many other »stars«, all kind, unselfish, I shall not enumerate them here, but we are placing their photos in our archives.

These charities have been a personal joy to me. In all the halls, wherever they took place, I have felt a uniquely pleasant athmosphere. The artists have been superb, the audience in a good mood, enjoying it. The little knights have had an opportunity to meet again and also to »perform« \- they went on the stage and presented the artists with flowers. On earlier occasions they were at times hard to persuade to go up there, but nowadays it is not a problem any more. They actually compete for the opportunity to say thanks in public. I am also glad to notice that more and more of the little knights come, at first they were only a handful. But the interest is growing and so is their group at after-the-concert- wine and cheese. Most of these charities have taken place in Ljubljana, but we have been to other places, where it is more difficult to gather an interested crowd. We have given concerts in Maribor, Celje, Pivka, Škofljica, Domžale, and have met there the little knights who cannot easily make it to Ljubljana. We, from Ljubljana, usually rent a bus, also picking up some on the way. Such a trip has its own charm, once we had Mila Kačič with us on the bus. I am reminded of a school trip and again feel young amidst my young friends. Our main feature usually is Zlatko, »master of ceremonies » in the bus, telling jokes, reciting poetry, singing; he is blind and feels safe in our company, enjoys entertaining us.

The work in the Foundation, meetings, concerts, charities and, not least, group vacations at the seaside, thermal springs or in the mountains are a constant stimulus and joy. About 80 little knights take part in vacations, about 30 in termal springs, each year. This is what our finances allow. Of course, the needs are much greater, there are requests for social assistance and for scholarships that we have to turn down. This is really awkward at times. I know of no well-off or even rich little knight.

The Council of Little Knights .

We took a step forward in organizing our humanitarian foundation. A Council

Of the Little Knights was formed, as an annex to the Foundation, which under the law cannot have members while a Council can. A legal solution has thus been found.

The Council has a president, its board and over 200 members - childhood cancer survivors, their parents, friends, people of good will. We welcome every new member, everyone has something to contribute. Our experts, also board members, are short on time, mine is also beginning to run out. It was therefore necessary as well as gratifying to have found a way for the little knights to help themselves in an organized manner. This was the aim of the Council, together with making the little knights and their problems better known. They will also have to take some initiative, which seems to be bothering them, they would prefer to remain in the background.

After one year of the council functioning an assembley was called, to elect new »officials«. About 50 members came, mainly those from Ljubljana, and surprised us with the first edition of their gazette »The Voice of Little Knights«. This is not a small achievement, I was proud of them. Aljaž gave the paper its form, the articles were written by Council members mostly, some of whom showed considerable talent as poets, writers, organizers. At the opening of the Council session I was invited to the podium and after my short speech Davorin presented me with a sunflower and with the first issue of the »Voice«. We hugged tightly and I felt a lot of warm hearts hugging me. I don´t know, maybe you can´t understand what I mean, for me this was simply a very happy moment. And again I have to say that I feel privileged. In these last years of my life, granted by God, I receive so much warmth and friendship by these young people. I fancy that few people have so many sincere young friends.

However, these happy moments are of short duration. Soon, bad conscience takes over. Clearly, the stories of and about the little knights are constantly being written, each year at least 50 of them. Alas, some are short and painful, I have barely touched on these in my writing. Most, I don´t even remember in detail any more, but they do lie on my conscience, each of them. With each little patient we couldn´ t save, or didn´t know how to, I have asked myself »Why?«. Have we done something wrong? I am pursued by these questions to this day and rightly so. This way we shall, slowly, learn how to help those we cannot help today.

It is good to see how the little knights are being more independent, are making their own plans for the future, are pursuing their ambitions, are socializing and helping each other. As they appreciate health and life itself, friendship and help when in trouble, they will also give help to someone asking for it. They will be an example to their contemporaries who don´t have their experience and are ignorant of all this. The little knights value tolerance of those who are different, anybody should be able to learn this from them.

Summary.

Having been emotionally engaged all the time, at all meetings, it might be advisable at this point to present a more objective picture of our activities and observations. Martina Burger-Lazar, M.A., our young researcher, has highlighted some interesting facts and described the findings. Let this analysis serve as a kind of summary of what I have been describing as my personal experience.

The treatment of cancer is getting more successful. According to the Cancer Registry of Slovenia there are in Slovenia about 44.000 persons – survivors of cancer, about 900 of these had had cancer as children. The demanding treatment as well as the disease itself often have late effects, which may considerably influence the quality of their lives. Besides physical damage, which we have learned to minimize by by tailoring the treatment to the individual patient, increasing sources of worry are mental and social problems facing the survivors later in life. In a child, who had his disease and treatment in a sensitive perod of his life, growing, mental and emotional develeopment, these problems tend to be more pronounced than in adults. Many late effects are not known yet, since decades ago most children with cancer did not survive. Only a few percent did, while nowadays about three quarters of them do. Thus, even as the incidence of childhood cancer is increasing, its mortality is decreasing at the same time. Everybody engaged in treating these little patients and in assisting them afterwards has come around to the opinion, that these youngsters, who have a long time still to live, have to be followed constantly, lifelong. The need for psychological support of the survivors has emerged only lately as a problem. Until recently we considered our work done when cure was achieved. Today, **cure alone is not enough.**

At the Institute of Oncology everybody who has been treated for cancer in childhood is included in the program »Late effects of childhood cancer treatment«. Since 1993 this has been financed by the Ministry of Science. Since 1986, a psychologist participates in the team of young researchers, doctors and nurse. He has evaluated over 250 young cancer survivors. The first impression of late emotional damage, due to disease and treatment, in the form of shyness, isolation tendencies, lack of assertiveness, lack of persistence, lack of competiteveness as compared to their peers, has been confirmed with objective testing. Nevertheless, it is not quite clear, understandably, how to evaluate the quality of their lives properly.

Over 600 former patients are now included in our program, all at least 16 years of age and at least 3 years after completed treatment. About 500 of them are followed at the Institute of Oncology, about 120 prefer to be followed at Childrens´Hospital until they reach 18 years of age and about 40 refused the follow-up at the Institute alltogether.

On examining them, we carefully look for possible evidence of recurrent disease and also possible evidence of damage to organs known to be sensitive to treatment: heart, lung, gonad, endocrine glands, kidneys, brain. These are being studied in particular detail by our young researchers. Here, we are talking about psycho-social late effects.

We ask the former patient how he remembers his illness and the treatment, what was the most unpleasant part (pain, fear, isolation, feeling of being abandoned), we inquire into his family and social life as well as relations to a partner. Our clinical psychologist and one of the young researchers test the intellectual capacity and personal characteristics. From these examinations and also conversations with former patients we were able to draw some conclusions to be usefully employed in our present patients; for instance, do we reveal the diagnosis or not? Opinions on this differ, around the world as well as in our country. It has turned out that about one half of the patients have found out about the diagnosis during treatment, the other half later, after completed treatment. We cannot say why only later in them. Were they too young for truth to have a meaning for them or have their parents been hiding the information? A whole 11% did not know their diagnosis when first seen at the follow up at our Institute.

The analysis showed that those who were told the diagnosis during treatment were more afraid while treated, but are, on the other hand, at the present time kinder and more trusting towards others. **It was particularly helpful when the child was informed by his parents, it contributed to trust and openness on the part of the child.** Surely, this kind of information about the seriousness of his disease is a burden for the child undergoing treatment. Yet, it also gives him an opportunity to talk about his condition and his anxieties. Often, parents try to shield the child from the truth, thereby withdrawing much of their support. The child then feels lonely, seeks information elsewhere. Many have observed fewer adjustment problems in those children who had had opportunity early on to discuss their predicament. In our survivors, too, we could note that **informing the child when at least 5 years old about the nature of his disease has had a positive effect on long-term adjustment.**

Those, who found out about their disease later on, did not experience such fear, but with time, did become more distrustful and less open. Especially those who learned their diagnosis only at their first examination at our Institute have also experienced a great deal of fear and anxiety. They turned out less open to different views, experience, novelties, values and costums. They were also less trusting, probably due to having been entrusted so late themselves. This experience was the most unpleasant to those, who have learned their diagnosis on their own, from the files, from books, other documents.

Our results confirm the principle of being open towards the children and considering their basic rights to know about their disease and their prognosis. It is of benefit, if this is done by the parents, while the doctor does play an essential part, offering clarifications and support for both the child and his parents.

Let me remind you of the young businessman, who concluded his story like this: «Thinking back today« he says, »it would be much better if the children were also told what it is all about, not only the parents. These then walk around sad and depressed and you think you will probably just have to die.«

We have also found that the personal characteristics of many a former patient were influenced by how often he had been admitted to the hospital ward. The conditions in hospitals and practices on admission have been undergoing great changes during the time our former patients had been treated. They still felt quite lonely in the 70's and 80's. Later we made efforts for the parents to be able to spend as much time as possible with their child, who should therefore not feel isolated and abandoned. Nevertheless, events during the treatment itself have had different impacts on former patients, depending also on their age and the mode of treatment. The youngest ones, at the time of treatment, do not remember fear as much as those aged 6 years or more. Yet, those who were under two now show most fear of being left alone, are less self-confident and readily feel abandoned. Those, treated between ages 3 and 5, are typically afraid of being abandoned, their most significant experience having been loss of contact with parents and siblings. Children who were treated when already in school, i.e. from 6 years on, have mainly missed contact with their schoolfellows and friends and are having problems with re-entering friendships, and, of course, school. Here, also, overprotection by the parents and consequent over-dependence, is playing a role. The school and the wider social milieu become more important here. When the child gets sick, the educational process suffers, he is also afraid of being stygmatized. He worries about physical disabilities and sometimes phantasizes about surgical procedures, about the disease itself, as a sort of punishment for wrongdoings, even for bad thoughts. There is also fear of death. Those adolescents, who had been brooding before about the remaning of life, bear an additional burden. They also are more afraid of recurrent disease and more often ask: «Why did it have to be me?« **An interesting finding is, that atheist survivors report more fear during treatment than the religious ones, which could indicate a helpful role of religion in coping with life-threatening disease.**

We were unable to find any significant influence on the personality of the survivors by physical damage, such as amputation of a limb, short stature, decayed teeth and similar late effects of treatment. These effects take different forms in different patients and it is not easy to connect them to personalty traits. Nevertheless, there were instances of inferiority feelings due to such physical damage, revealed in conversations. Remember the grown –up young woman, who lost one eye, as a child: «I cannot accept myself the way I look and I would not believe a man that he accepts me such as I am«.

We have also found that parents often for years and years live under the burden of the disease and are overprotective. Many a former patient, aged 18 or 19, would first arrive to the clinic at the Institute of Oncology accompanied by his mother. This first encounter at our Institute seems to be helpful in maturing the youngster. It is explained to parents that from now on it is his, the former patient´s, responsibility to take care of his own health. He must go to follow-up and follow instructions. The parents are no longer required to give consent, he has to decide for himself, has to take responsibility and, from his first visit at the Institute, face all the problems as a grown-up person. Surely, there are impeding circumstances, like the fact that 80% of them still live with their parents, almost as many are still not married, even if 70% have finished their school or vocational training. Our explanation for this phenomenon most probably is parental overprotection. However, overprotection seems to work both ways, too - a grown – up young man has said: **«The nicest place for everybody is at home, even if it not in his best interest.«**

One of the more important findings and typical of the problems faced by these youngsters is that only 28% have found work in their chosen profession; it is an indication how much of an obstacle their former disease represents in the job market. Discrimination on the basis of cancer in childhood is not at all rare. We have evidence of the employers´ fear that the employee will die since they don´t believe that cancer can be cured. They also fear frequent sick leaves since the prospective worker can´t possibly be cured. Our former patients report many instances of being stygmatized, of being considered less capable. **Thus cancer patients face prejudice in everyday life.**

It is not easy, naturally, to determine how much a disease like cancer directly or indirectly impacts the development of personality. Yet, a broad field is opening in which to explore the risks of psychological disturbance in children and their families because of their cancer in childhood. Therefore, good prevention, preparation of the child and the whole family for the treatment and for the time after that is very important .

It may be of interest that we have only one suicide among our former patients, while the incidence of suicide among 18-25 years olds in Slovenia is among the highest in the world.

Talking with our youngsters we get a strong impression of them placing a different value on their lives having survived a life-threatening disease. They value life more than their contemporaries, even if they are often satisfied with less than they deserve, because they are not always able to make use of all their abilities.

Our investigations show that lifelong follow-up of former childhood cancer victims is necessary. The late effects of treatment get more frequent with the time of observation, so does the need of medical and psychological assistance and consequently, the need for financing further research in several new fields.

As we take a look today at the group of youngsters cured of cancer during the last ten years, we see a number of adolescents and young adults, joining our Society. They bring with them their unique experience, resulting in tolerance for those who are different, a spirit of team work, of offering help, qualities badly needed in our Society. Our studies have shown all that, but also their need of assistance in taking their place in the Society, mainly because of emotional handicaps due to their former disease and treatment.

I have no doubt, that the efforts we are making in trying to improve their chances for survival and the quality of their lives are richly rewarded. Former patients are contributing to our Society as are their children. We should be grateful to them for these rewards.

At the end, another item: our »little knights« are themselves parents to numerous children. Having had a closer look at them, and their medical files, we could establish with certainty, that these children are in no way different from children, born to other Slovenian mothers in the same period of time. Their birth weights, their overall health, most probably also their beauty is equal. Well, speaking of children, I myself am a great-grandmother already and it is time somehow to bring my story to an end.

When I paid a visit to my granddaughter in the maternity hospital, it was her second child, she told me: « It was superb, quite different from the first time. No fear this time, I knew what was coming. »

Fear is really not good, let´s do away with it wherever we can.

Thanks and acknowledgements.

Thanks to my oncologysts, colleagues who invited me to the congress in 1986 to report on my experience with the effects of childhood cancer treatment. Thanks to the Ministry of Science of Slovenia for understanding and financing the project »Late Effects of Childhood Cancer Treatment« for many years. Thanks to the young researchers, especially Dr. Lorna Zadravec-Zaletel, the first to have helped me with the task. Thanks to registered nurse Janja Babič, also working on the project from the beginning, as well as later in the Foundation, solving many a problem by her dedication and friendship offered to the youngsters. Thanks to the little knights for enriching all of us with their painful experience, this booklet would obviously not be here if not for them. My special thanks to the first fifty of them, who accepted my invitation and shared with me their problems, anxieties and virtues, thus opening my eyes for further work. Thanks to my friend Žarko Petan, the writer, who encouraged and helped me to publish this booklet. And my main thanks to all people of good will, our friends and benefactors, who attend our concerts and charities, who appreciate our efforts and make us feel all the time that what we are doing makes sense also in the eyes of others, not just those directly concerned.

Thanks to my husband Marjan for the translation.

My warmest thanks to my friend Giulio D'Angio for editing this booklet and also for everything I learned from him about treating children with cancer.

