The Little Knights Page 17

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 ha
ve 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