Editors' note

This second number of 1998 of the international newsletter offers a variety of information. Pia Bonini paints a picture of how the parents group of Monza (Italy) developed a training course for parents to lead a self-help group. We reprint the guidelines for a therapeutic alliance between families of children with cancer and hospital staff as they were drawn up by the psychosocial committee of the SIOP. You can read about the activities of the Children's Oncology Camping Association International and the checklist they are creating at the moment. The use and necessity of parent houses has been undisputedly proven by a study under the authority of the Ronald McDonald Kinderfonds (Netherlands). The report and information about the Ronald McDonald House Charity Europe is printed in this newsletter. And a Belgian survivor of childhood cancer makes an appeal to all survivors to make their contribution to a survivor's quilt.

We are looking forward to receiving you all at ICCCPO's next General Assembly in Frankfurt, Germany. At this moment - it is mid June - we have received 100 registrations from 34 countries from all continents. And we are expecting more. Frankfurt promises to become a very exciting meeting where you can exchange ideas and experience in meetings and workshops and where ICCCPO will show her international face to the world.
The SIOP meeting in Japan will be another interesting experience where parents, doctors, nurses, psychosocial workers and teachers have the opportunity to meet each other, to attend each other's sessions and to come to a better understanding of each other's way of approaching childhood cancer. More about these meetings under the heading Meetings.

And of course we call you all to write, fax or e-mail us and to tell us about your organisation, the problems your are facing and the ways you solved these problems. Do not hesitate to ask our help when you have problems in forming or maintaining a parents group. 

We are looking forward to your contributions to our international newsletter. It is one of the ways to share experiences, so use it! We are all parents of a child with cancer, we share universal emotions, whether our child is under treatment, has died, or has been cured. Let's join hands and make the world a better place for children with cancer, everywhere.

Marianne Naafs-Wilstra 
Gerlind Bode

Back to index

ICCCPO News

Send us your news!

ICCCPO wants to keep in touch with you. Let us know about your activities, news, developments, etc. as well as any changes of address and leadership.

Membership

ICCCPO wants to be the voice that advocates for all children with cancer in the world and therefore invites every interested country to join in order to help, learn and assist each other. We want to make sure that every child has access to potentially life-saving treatment. Together with the professionals of the paediatric oncology team, parents and parent organisations world-wide need to work together to help families throughout this most difficult period - no matter what the outcome. Thus, hand in hand, we can make a difference! Education, help and assistance are not far away. If you are not a member already, you may register to become a member of ICCCPO. 

The annual membership fee is $500 for a nation. If there is more than one group in your country, you can split this amount (however, one nation, one vote). But money, or rather, the lack of money, should not prevent yon from joining the international confederation. If your organisation does not have the financial means, please indicate this in your application. It is a question of solidarity that those groups who are able to pay more take care of those who cannot. 

Chemo-Kasper: Edição Portuguesa
There booklet Chemo-Kasper is now also available in Portuguese. The booklet "Gaspar-Quimio e sua caça às antipáticas células do cancro" has been published by Acreditar. 
Orders: Acreditar, Associação de Pais e Amigos das Crianças com Cancro, c/o Rua Porf. Lima Basto, P 1070 Lisboa, Portugal, tel/fax: + 351 1 8402682.

Radio-Robbie

The little book Chemo-Kasper, an edition of the Danish group, has been translated into many languages and has proven to be of great help to children who are treated with chemotherapy.
The Dutch group has adapted the idea of Chemo-Kasper and recently published the book Radio-Robbie. The book wants to make the intangible procedure of irradiation accessible to children. The rays are represented as Radio-Robbie who fights the bad cancer cells like a real superman.
The booklet is available at: Vereniging 'Ouders, Kinderen en Kanker', Achterdijk 85, 3985 LA Werkhoven, The Netherlands, fax + 31 343 551969, e-mail: mcnaafs.vokk@wxs.nl
Marianne will bring copies to Frankfurt and Yokohama.

The ICCCPO Bibliography

The ICCCPO, with the help of Candlelighters Canada, will prepare and distribute a catalogue of all resources by parent initiatives. Please forward your published resources to:
Candlelighters Childhood Cancer Foundation Canada, 55 Eglinton Avenue East, Suite # 401, Toronto, Ontario M4P 1G8, Canada. 
Kindly accompany this resource with an annotation in the original language and in English! 

Newsletter in translation

Spanish and Italian versions of former ICCCPO Newsletters are available at the Secretariat in Canada. We are looking forward to receiving any translations into other languages! 

New ICCCPO Brochure

Enclosed you find the revised ICCCPO brochure. If you would like to receive more copies, please contact the secretariat in Canada. 

Back to index

Book announcement

Brand new is the book "Know before you go. The childhood cancer journey" written by Sheryl Lozowski-Sullivan and published by the Candlelighters Childhood Cancer Foundation USA. This handbook compiles the collective knowledge of many families who have experienced childhood cancer. It is a general guide for families of children with cancer and contains three sections:
· Know before you go: things to know as your journey with childhood cancer begins
· Know while you're there: things to know as the road becomes clearer
· Know before you leave: things to know before treatment ends.
In these sections all topics are covered, from accepting the diagnosis to organizations (in the USA) to contact. When topics are discussed briefly "More reading" at the end of the section lists other readily available (often free) publications.
This handbook will make the journey of many families with childhood cancer smoother.
Orders: CCCF, 7910 Woodmont Avenue, Suite 460, Bethesda, Maryland, 20814-3015. Phone: + 1 (800) 366 2223, + 1 (301) 657 8401.

Back to index