Due to improved medical strategies these days, more children survive a malignant disease and grow to normal adolescence and adulthood. As soon as they leave the clinic, these young people wish to live a normal life, and the clinical and psychosocial staff does its best helping to integrate the patients as quickly as possible.

For many of them - especially, when they were treated for their disease as older teenagers (age 14 to 18 ), even years after treatment their wish to communicate, to exchange their experiences, their fears and hopes is very strong.

They feel they do not belong to the parent groups since their normal development is the separation from home with growing independence. And they do not feel comfortable in the existing adult self-help groups, because the average age in those groups is far beyond their own age and the problems differ from those of young adults. Here are young people, age 18 to 30 - some still in school, some starting university studies, others are in the beginning of their professional life. Their concerns and interests are dominated by the problems of this special time in their lives:

They want to know their social rights as students or employees, especially if they have handicaps due to the treatment of their disease. They want to get financial help and want to know all about their future and about possible health problems they might encounter (such as sterility or other possible late effects). They are concerned about their friendships and partnerships and whether and when they should talk about their disease and so on.

To meet these demands we started in 1991 the first meeting of young adults from all over Germany (we - that is the head organization of all parent groups in Germany, the German Leukemia Foundation). The invitation was sent to all parent groups, to the psychosocial services of the hospitals and to counseling services of the communities. We designed the program together with a couple of young people from our area, with whom we had created a booklet for teenagers previously, thus being sure to meet their expectations. 

More than fifty young people came to this first seminar, and they formalized their wish for regular meetings, at best twice a year to make it possible to most of them to come to at least one session per year. We agreed on the first weekend in May and the first weekend in October to have fixed dates. And we agreed on allowing a limited number of partners to join, as for them the seminar experience seems to be very helpful, too. 

The house we found for these seminars meets most of the demands: it has single and double rooms, a number of group rooms, a swimming pool and a large area for physical activities. It is accessible for the handicapped and easily to be reached by public transportation and by car. And it is relatively inexpensive. Our organization pays a good part of the accommodation fee and the travel expenses of all participants. Thus, the meeting is affordable for everybody, no matter how far he/she has to travel.

We invite pediatric oncologists from the various centers to talk about medical topics. Usually the group is very interested in medical information, and they pose all kinds of questions - mostly very personal ones to clarify remaining mystics about their own treatment. There are psychologists and social workers for the group sessions, and we try to find interesting people to introduce various physical activities.

The tables show the variety of topics, which have been offered at these seminars over the years, some have already been repeated.

It showed already at the first meeting that it is very important to leave enough time in the program for discussion and informal exchange among the participants. And the most important part appears to be the evenings' get togethers in the basement bar, which is always converted into a disco during the weekend. 

The first evening quickly breaks the ice for each of them and integrates even those who have been hesitant. In this group of "people who understand" all inhibitions - otherwise felt in a "normal" disco - are quickly eliminated. Here even those who did not dare to dance in public, especially if they are handicapped due to the treatment of the disease - start to "feel accepted".

About one third of the participants comes almost each time, one third comes now and then, and one third is usually "new". It seems a very "healthy" mixture, as the "new ones" are quickly integrated in an open and friendly atmosphere. Among the "older" ones friendships have developed, they see each other between the seminars or call and keep in touch. They are also concerned when medical measures have to be taken, and they visit each other in the hospital, if a new admission becomes necessary. 

On this level, a kind of self-help movement develops. But more than that does not seem possible at present. Though they often raise the question how to organize a self-help group, and though it has been discussed several times, they do not seem to be successful in establishing one, partly due to their own mobility but also because of long distances to the centers and thus to other young patients their age. But we keep trying to convey the necessity of self-help especially for those who are still in treatment as one of the most frequent complaint about their own hospital time is: "I wish somebody my age would have visited me while I was sick. I would have loved to hear from somebody: 'hey, I know how you feel now, but look at me, you can make it!'"

Each seminar is summed up by a news letter which they have called "Total Normal" (totally normal), a result of their desire to communicate. The brochure informs about the topics of the seminar, includes articles written by some of he young people and offers information of general interest. There are always different participants involved in the set up of the news letter, volunteers from each seminar. Our task in the office is to put it all together, get it printed and distributed to all participants, medical centers and parent groups to keep them all informed. It has become an import and link among the young people and between them and the institutions.

To meet their wish for more group activities, we help to organize a skiing trip for those with amputations and a sailing tour for everybody each year. These activities further the group awareness and help those with handicaps in their integration process.

During the seminars the question of public awareness about cancer in young people was discussed and the lack of information in the majority of the general population was regretted. Thus a very special action was developed to do something about the information gap in public: a group of about 20 participants of the seminar organized a bicycle tour through all of Germany. They started their tour last year in the new states of Germany (where the lack of information is still greatest) from Hannover to Dresden, visited in this one week all pediatric oncology centers along the way, and they continued their tour this year from Dresden to Schwerin. Their goal is to increase the public awareness about cancer in childhood and to break the taboo still existing about this topic. They talk to children in treatment to stimulate their hope by being a "good example" and they meet with public figures, such as mayors, state representatives and company officials. As much of the organization is in the hands of the young people (only guided and directed by our office and the local parent initiatives), this tour contributes highly to their self esteem. 

Each seminar is a new and very intense experience with serious discussions, emotional ups and downs, and - most of all - a lot of fun. After all - we who are are involved in this kind of work can learn a lot from these young courageous people.