A note from the editors

Though it is a beautiful Spring at the Northern Hemispere we realise that elsewhere it must be Fall by now. Seasons however will never prevent us from working together.

This second edition of our international newsletter will be send to all parent organizations we know. The number is still increasing. You can help us to reach as many parents as possible by making photocopies for all those who are interested in this newsletter and by sending us the address of any organization you know.  

This newsletter contains the Valencia Declaration, made by the International Confederation of Childhood Cancer Parent Organizations on the 1st of May 1994. You will also find a lecture on Clinical Trials and Protocols from the parents meeting at the SIOP Conference in Paris in September 1994. We have started a column Book reviews and announcements. If you know any books of interest, please inform us or, even better, send us your review.  

The deadline for the next edition will be Oktober 20, 1995. We are looking forward to your contributions. Please send them to either of the two editors' address:

Marianne Naafs-Wilstra
Gerlind Bode
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A Word from the president

Several objectives - described in the last number of our newsletter - have guided us, all the organizations that decided in April 1993 to start an international network and constituted the ICCCPO on the 1st of May 1994.
'To pass experiences, the profit of long years of work, in order to increase the effectiveness of our job' is one of our most important objectives.

The opinions exchanged have reconfirmed the important needs children and their families have.
* Parents and siblings need to be integrated in the therapies of the sick children. 
* It has been proven that the disease of the child affects the whole family. At first, the parents fall into a passive attitude generated by a feeling of impotence and helplessness. They should be encouraged to react and give their children an important treatment: the parental-therapy. We define parental-therapy as the union of intimate and continuous contacts between parents and children during all phases of the illness, above all in those phases in which the child is forced to leave his natural family environment. This reaction and integration will make parents feel more useful and positive.

For this aim, we must collaborate with all members of a multi-disciplinary team to lose the logical fear to the unknown, by:
* making sure that parents receive suitable and continuous information in each concrete case about childhood cancer, treatments, results, late effects, and general recommendations;
* giving parents a suitable training about the minimum care that the family can and must supply, especially at home;
* giving parents an adequate health education;
* making sure that parents exchange experiences so that they can organize themselves according to the new situation they are now facing.  

This way they will change from a passive to an active and positive attitude and feel integrated in the process of the disease. At the same time, they can re-establish their own psychological balance and that of their child.
A psychologically healthy family is better prepared to cope with the disease and its implications.  

The ICCCPO has started a bibliography of informative publications relating to all aspects of childhood cancer. This collection will include all the books, articles, brochures and newsletters that the member organizations publish. It will be available for all organizations or people who are interested. 
The amount of information available for those people who need it will depend on the number of documents we can add to the existent list.

Jesús Ma Gonzalez Marín, Chairman

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ICCCPO News

Membership

Many organizations have already applied for membership of the ICCCPO. We hope more organizations will follow. Our mission statement 'to share information and experience in order to improve the best possible care for children with cancer all over the world' can only be realised with the strong cooperation of as many countries as possible. 
Any parent group who wants to apply for membership should ask the secretariat in Stockholm, Sweden, for sending an application form!
The annual membership fee should be $500 per nation. If your organisation wants to join but does not have the financial means, please notify this in the application. As an appeal to solidarity, there are nations willing to pay more and thus help others who cannot afford this amount to join the international confederation. 
Please notify the secretariat if your address is incorrect or incomplete.

Bibliography

The ICCCPO has started a bibliography of all books, brochures and newsletters of the member organizations. Please send a list of all your editions with a short summary in English (one or two lines) and the ordering address, preferably on diskette (WP) to Gerlind Bode or Marianne Naafs (editors). 

Addresses

If you would like to receive a complete list of parent groups known to us, write or call the secretariat.

National Confederations

In Italy as well as Poland the several organizitions of parents with children with cancer have united in a national federation. ICCCPO has played a stimulating role in the unification.
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Book reviews and announcements

Coping with Childhood cancer. Where do we go from here? 

David W. Adams, Eleanor J. Deveaux, 
Kinbridge Publications, Ontario, Canada
ISBN 0-9693233-0-1

More and more children are living longer with childhood cancer, and increasing numbers are potentially cured. Still, cancer strikes without warning, threatens life and strains every aspect of family relationships.
Previous editions of this practical, straightforward, self-help guide for families and learning resource for professionals, sold out completely. It received excellent reviews in the New England Journal of Medicine, the Candlelighters Childhood Cancer Foundation Newsletter, Canada's Mental Health and a wide range of journals, magazines and newspapers around the world. Parents and professionals in the U.S., Canada, Australia, Great Britain, and other countries have recommended this work to families, relatives and friends, as well as to professionals.

From a book review by Sheena Ross, parent of a child with cancer: 'I have read many books on childhood cancer but this is the first one that really seemed to speak to me. So many aspects that I have learned slowly and painfully over the last five years, are discussed openly, honestly, and positively. If you only read one book from our library, make it this one. I am sure you will find it time well spent'.

This new revised edition is completely up-to-date and continues to tell the whole story about childhood cancer from its onset through remission and long-term survival, or through relapse, death and grief for the survivors.
Written by an experienced social worker and nurse with the help of parents, physicians and other professionals, this book is realistic and easy to read. Unique features of this book are the Reader's Guide and the wealth of information gained from those who have coped with childhood cancer.

Highlights from the book: 
o At diagnosis
o Special help for single parents at diagnosis
o Early remission and continuing treatment toward remission
o Long-term survival
o Relapse
o Children's knowledge of death
o If your child is dying
o After death: how families live through grief and mourning
o New ideas, new directions
o Chemotherapy and its side effects
o Glossary
o Additional reading material
o Additional support and information for families

Orders to: Kinbridge Publications, Box 89065, Westdale Postal Outlet, Hamilton, Ontario, Canada L8S 4R5
Price: Canada: $22,95 plus $2,50 shipping; outside Canada: $20,95 U.S. plus $3.50 shipping
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