The Little Knights

The Little Knights

  Berta Jereb

  Copyright 2013 by Berta Jereb

  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 hav
e 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