A word from the editors

It has been a very busy time for the ICCCPO board with two meetings right after each other (the General Assembly meeting in Frankfurt and the SIOP meeting in Yokohama). Both meetings have been well attended and were a success with respect to their programs and content offered. It proves that we are doing our "job" more efficiently now. 

This newsletter will contain some lectures and presentations from those meetings along with the Annual Report and other articles of (hopefully) general interest. Through this newsletter we hope to keep close contact with all of you who are interested in the ICCCPO work but so far could not attend any of the meetings and with those we met just recently. Please keep us informed about what is happening in your organizations and what are the most important highlights as well as your problems.

Please also respond if your address is not correct or you want somebody else listed on the mailing list for the newsletter. You can help spreading the ICCCPO idea by making copies of the newsletter which you can distribute to other parents or by translating it into your own language in order to have a better acceptance in your country. Send a copy of your translation each time to the secretariat, as there might be more requests for this particular language.

We wish you a wonderful Fall and Winter season (or Spring and Summer when you are living in the southern hemisphere!

Marianne Naafs
Gerlind Bode

Back to Index

Celebrating Life

Gerlind Bode reports of a meeting in Taipei where she was a guest at a television show and visited several hospitals, among those a hospital where traditional Chinese medicine is taught and practised along with modern medicine.

The German Leukaemia Foundation in Bonn received an official invitation for a meeting in Taipei in May this year - a great surprise, but a big challenge as well: for us in Middle Europe it would mean to travel once around the world in order to get to Taiwan. But it seemed at the same time a great opportunity to represent parent initiatives from Germany as well as the international confederation and its goals in the Far East.

A family who had lost a son to a bone tumour in 1997 had started a support group in Taipei right after the death of their child. They had published poems and letters of their son and were surprised about the enormous echo in public. A year later they wanted to start a first big event both for fundraising purposes as well as for publicity and called the event: "Celebrating Global Life". A representative of the Candlelighters' USA and I were the international guests at this meeting which turned out to be a well organised and elaborate evening show for television broadcasting. Many outstanding celebrities of Taipei's public and cultural life were integrated to give this show a specific interest. A number of teenagers and young adults with different kinds of handicaps were included who demonstrated how they were able to cope with life in spite of their specific health problems. They spread the message of hope and courage and gratitude for life in general, their presentations made this show very emotional and special. 

During the three days of our stay in Taipei we were able to visit a number of hospitals with paediatric oncology units which impressed by their high medical standards. Interesting was the visit to a clinic in which traditional Chinese medicine is taught and practiced along with modern medicine. The staff in that hospital was very interested in learning all about parent groups and how to start them. Namely the social worker, a very engaged young lady, was asking all kinds of questions about our experiences. They were sincerely interested in all our brochures, newsletters and what we had taken along about our work. They involved us in a lively conversation, which we would have liked to continue, but unfortunately, had to stop as our flights were leaving. We hope to be able to stay in closer contact with these people to learn more about their ways of dealing with parents of paediatric oncology patients as well as offer our experiences in exchange.

We were given copies of the book written by the brave young boy and were asked to spread his message of hope and gratitude, which he seems to have kept throughout the time of his treatment and even shortly before his death. We are trying to find a publisher who is willing to publish this book in translation. But first of all we need a translation from Chinese into English or German. Maybe one of our readers can help.

Gerlind Bode

Back to Index