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