Editors' note

This year's main event will of course be the ICCCPO General Assembly Meeting and Conference at the SIOP-meeting in Montreal in September where we hope to welcome many of you.. We have been able to compose an interesting program with a variety of sessions. In addition to the General Assembly Meeting, we offer informative lectures, workshops on practical issues and the opportunity to share information and experiences. You find the complete program in this newsletter. 

Being a world-wide organisation, ICCCPO is well aware of the fact that socio-cultural circumstances influence the ways families cope with childhood cancer. Mokhtar El Harras of the parent organisation L'Avenir in Morocco, gave an interesting talk about this topic at SIOP Africa (1998) which we are allowed to reprint here. We also pay attention to survivors' issues in three very different articles. Our chairman, Mark Chesler, raises the question whether or not cooperation is possible between support groups for parents of children with cancer and national cancer associations. And finally two groups - one from Russia and one from Bulgaria - present themselves.

Of course, as usual, we invite you to share your experiences, programs, successes and failures with all of us.

Looking forward to meeting many of you in Montreal.

Marianne Naafs
Gerlind Bode
Pia Bonini

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The survivors' quilt

Simone Mondelaers, a young cancer survivor from Belgium, is preparing a large survivors' quilt to be presented and illustrated in Montreal at the ICCCPO Parents meeting on the occasion of the annual SIOP Congress. The quilt is meant to be a symbol of the gift of life, a precious gift that survivors would like to share with all children who are still fighting cancer. The message the cover will spread is that not only we parents but also our children who have defeated cancer and are now young adults, believe that every effort has to be made to allow the greatest number of children to have the possibility to be cured. The quilt will be made of patches prepared by survivors and sewn together by Simone and her friends. Each patch will feature a hand, a helping hand. 

Recent news from Simone says that patches of quilt are regularly flowing into Belgium from many parts of the world but she would like to have as many countries as possible represented. So please read the instruction below, start working and send your work of art as soon as possible to:
Simone Mondelaers
Zonnedauwstraat 33, 
B2200 Herentals-Antwerpen, Belgium
Tel/fax +32 14231710
The deadline is April 15 but we are sure that Simone will manage to insert also the late arrivals! 

Instructions:
- make a square of cm25x25 of plain one colour fabric;
- take a coloured piece of fabric, draw your hand, cut it and sew or stick it to the plain fabric;
- write your name and if you wish your country on the hand;
- mail it to Simone at the address above and do not forget to write your full name and address so that she can send you a picture of the completed quilt.

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Books

Proceedings of the ICCCPO/CCAJ Meeting in Yokohama, Oct. 1998

For the first time in its short history the International Confederation of Childhood Cancer Organisations (ICCCPO) organised an international parent meeting in Asia together with the Children's Cancer Association of Japan (CCAJ). The meeting took place along with the annual SIOP Meeting in Yokohama, Japan, from October 4-7, 1998. For four days more than 400 parents and professionals from all over the world discussed long-term survivors' issues, psychosocial support for bereaved families, school programs and camping programs. Also a workshop on building and sustaining parent support groups was provided where 65 people discussed in small sub-groups the following topics: education of parents, local programs, informed consent, working with medical staff, and fundraising. During the sessions the attendees not only gained a wealth of information from the papers that were presented, but also learned a lot from each other by exchanging experiences.

CCAJ took the commendable initiative to collect and print the written reports (both in English and Japanese) of this most interesting international parent meeting in order to share this valuable information with those parents and parent organisations that could not be present in Yokohama. ICCCPO is very grateful that CCAJ makes this book available to all of us. ICCCPO members will receive a free copy of this book. The book will also be available in Montreal at the ICCCPO/SIOP meeting. Other orders: CCAJ, 13 Hachimancho Shinjukuku, Tokyo, 162-0844 Japan, fax + 81 3 5228 6107. Costs: $ 35 US incl shipping and handling.

Emotional Aspects of Childhood Leukemia

The Leukemia Society of America has published an updated version of the publication Emotional Aspects of Childhood Leukemia. Although aimed primarily at parents of children with leukemia, the information addressed in the 66-page booklet is useful and reassuring to families with children also affected by other cancers. It includes the writings and research of psychologists, psychiatrists, social workers, physicians and nurses on the effects of serious illnesses on the emotional lives of children and their families. 

Four new topics incorporated into the booklet include:
*  Return to School Issues: Positive steps are outlined for parents, teachers, and hospitals to ensure a smooth re-entry for the child when he/she goes back to school.
*  Residential Camping Programs: The opportunity to take part in traditional camp activities can enrich a child's quality of life, boost self-esteem and offers a welcome respite for children and their families from the stress of living with cancer.
*  When Treatment Ends-Life After Cancer: Addresses the potential problems and stresses a family may face when the child makes the transition from active treatment to a normal, everyday life without treatment.
*  Sibling Relationships: Serious illnesses affect not only the parents of the child, but the brothers and sisters as well. Coping tools are offered to help siblings adjust. 

"Emotional Aspects of Childhood Leukemia" was compiled by Patricia Deasy-Spinetta, John J. Spinetta, and Faith H. Kung. 

The Leukemia Society of America, now commemorating its 50th anniversary, is a voluntary health organization with 57 chapters nationwide. The Society's mission is to fund research to find cures for leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families. For more information visit their Web Site at www.leukemia.org. For orders call + 1-800-955-4572.
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