A word from the editors

This third edition of 1995 of the ICCCPO Newsletter will hopefully reach you around Christmas. This item concentrates more or less on setting up groups. We have printed the lecture that Theresa Lanché presented at the parents meeting in Montevideo on founding a support institution in a developing country. Our vice chairman, Mark Chesler, has written an article on self help groups. Another article is about sharing and exchanging ideas, one of ICCCPO's main goals.

We make a report of the successfull Parents Meeting at the SIOP Conference in Montevideo, Uruguay. We met with many parents, profesionnals and volunteers from several South American countries and we will try as hard as we can to build out these valuable contacts to a real collaboration. We also report of the visit to the governmental hospital in Montevideo and to La Campana (the family house). 

We are happy to tell you that in the first announcement of the SIOP Conference in Vienna, October 1996, the Parents Meeting is in the program (see announcements). We also announce ICCCPO's third General Assembly in Denmark next year. We hope to meet many of you at one or both of these meetings.

We are looking forward for your contributions to this newsletter and to the ICCCPO work. ICCCPO wants to reach out and get in contact with parents that need our support. Therefore we keep on asking you to send information on your groups, your situation, your specific needs and problems. 

We also ask your help in spreading this newsletter to groups and hospitals you know, in your country as well as abroad. Keep us informed about any change of addresses and about newly established parent groups. And send us your translated versions of the newsletter, since they might be of great help to other organizations as well. 

The next item of the newsletter (Vol. 3, nr. 1) will come out in the beginning of Spring. Please send your contributions to either of the two editors addresses before March 1, 1996.

We wish you a all a wonderful holiday time and a happy New Year!
Gerlind Bode
Marianne Naafs-Wilstra 
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ICCCPO News

New members

We received several new applications for the membership of the ICCCPO. We would like to invite all groups and organizations to follow this example. If your organization already has joined the ICCCPO, you could bring in a new member organization from your country, a neighbour country or any other childhood cancer parent organization you have connections with. 
Application forms can be obtained at the Secretariat in Sweden. We do need the support of all parent groups, your's too, to make the "professionals" and the general public aware of the needs of children with cancer and their families. So, do not hesitate, and join us. The stronger the ICCCPO, the better the parents voice will be heard. 

Former Executive Committee members still active

Although at the last General Assembly in Washington Jesús Ma Gonzalez Marín, Jim Kitterman, Olga Rodriguez and Antonio Gentil Martíns left the ICCCPO Board, they are still very much involved in the Confederation's work. At the last Parents Meeting in Montevideo both Jesús and Olga presented a paper and the two of them and Antonio played an important role in the general discussions. In the future the ICCCPO always can make an appeal to these former board members. It is even more important since three of them are Spanish speaking.

Spanish and Italian version of the Newsletter

Newsletter Vol. 2, nrs. 1 and 2 have been translated into Spanish by Mrs. Hortensia Diaz Asper. Parts of the newsletters are also translated into Italian by Mrs. Pia Bonini Serrafero. If your organization would like to receive a copy of the Spanish or the Italian version, you should contact the Secretariat in Sweden. We are looking forward to recieving any translations into other languages!

Logo and brochure

As you may have mentioned the Executive Committee has developed a logo that expresses the interests of children with cancer and their families all over the world. Stationary, posters and pins will be produced soon.
A pamphlet on the ICCCPO's aims, objectives and activities is being prepared by Mark Chesler, Kurt Hansen and Christine Wandzura and will come out very soon. 
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The ICCCPO Bibliography

Candlelighters Canada is very proud to be able to develop and house an International Library for ICCCPO. We look forward to receiving resources from every country interested in sharing its printed resources with parent organizations in other countries. 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. Candlelighters Canada will prepare and distribute a catalogue of all the resources we receive to all interested organizations.

In addition to this new resource is a project of Children's Cancer Research Institute in San Francisco, California, U.S.A. Dr. Jordan Wilbur is nearing completion of a very comprehensive collection of psychosocial information in the area of childhood cancer. If you would like information about this new resource including any psychological, social or emotional aspect of childhood cancer, please contact dr. Wilbur at the address below. Or if you have a publication in any medium you would like to include in this collection, he would be very happy to hear from you. 
Children's Cancer Research Institute
2130 Fillmore Street # 235
San Francisco, CA 94115, U.S.A.
tel. + 1 415 346 7500.  fax: + 1 415 931 8960
email: 102127.3410@Compuserve.com

Christine Wandzura,
Candlelighters Canada,
Executive Committee ICCCPO

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Book reviews/announcements

Kinderen met kanker: school en toekomst
Marianne C. Naafs-Wilstra (ed.), 

Vereniging 'Ouders, Kinderen en Kanker', Zwolle 1995, 277 p., ISBN 90 75281 10 2, NUGI 725/732
Every year approximately 400 children and youths in the Netherlands are diagnosed with cancer. During the last few decades their chances for survival have increased considerably, up to nearly 70%. But for some of them the price they have to pay is high. Slowly the unwanted consequences of the illness and its treatment become clear to us, consequences that influence the functioning of the child at school and his learning abilities.
For a teacher the confrontation with a child with cancer in the class-room or at school usually is new and presents him with numerous questions. What exactly is cancer? What does the treatment look like? How do I treat the child and his parents? What are the emotional consequences for the child? What does cancer mean for the position of the child within the group? What are the consequences for the siblings? What is it like for the child to return to school? How do the classmates react? What are the psychosocial consequences for the child? What are the cognitive effects? How doe the classmates react when the child dies? And how do I deal with all that?
The book Kinderen met kanker: school en toekomst (Children with cancer: school and future) with contributions of experts form several hospitals and institutions and of parents wants to answer those questions. 
It contains an explanation of cancer and its treatment, it describes the side-effects and short-term and long-term sequelae and thereupon it describes the effect that these consequences produce upon the child's functioning at school and upon its learning skills. Recommendations are made as to how the child, his parents, the classmates and the siblings can be approached by the teachers.
From the contents:
o Cancer in children
o The importance of school for a child with cancer
o A child with cancer in the class-room: psycho-social aspects of childhood cancer
o Contacts between the classmates and the sick child
o Cognitive impairment and other educational problems 
o Bone marrow transplantation and its effect on the child's' education
o Parents' expectations
o The hospital school 
o In a remote corner of existence (hospital school) 
o Specialized education for children with cancer 
o The future: choice of curriculum and profession
o Siblings
o Grief and mourning in the class-room
o Sample letters
o Addresses
Orders: 
Vereniging 'Ouders, Kinderen en Kanker', c/o Ter Zwege 12, 8334 MG Tuk, Netherlands, fax * 31 521 516005. Price: Dfl. 32,50 plus shipping. 

On surviving childhood cancer. Late psycho-social consequences for patients, parents, and siblings.
Dr. J.E.W.M. van Dongen-Melman, Dept. of Child and Adolescent Psychiatry, Sophia's Children's Hospital/University Hospital Rotterdam, The Netherlands, Rotterdam 1995, ISBN 90 75584 01 6, NUGI 712
In October 1995 this most interesting study was published. Immediately it was highly recommended by experts and described as a standard work. In one of our next items of the Newsletter we will publish an article on this study by dr. van Dongen-Melman. 
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Educational meetings

Most groups organise once a year or more often an informational meeting for parents. To help starting groups, we give you some tips and a list of topics that might be of interest. One of the doctors, nurses, psychologists, social workers, teachers or parents will certainly be willing to read a paper.

General 
Place: Choose a central place, this can be the hospital but keep in mind that some people don't like to come (back) there. Sometimes a neutral place - conference centre - is a better choice.
Time: Choose a time when as many as possible parents can come, e.g. a day in the weekend. Reckon with distances and travel time, so don't start at 9 h in the morning and don't close at 9 h in the evening.
Other: Organise a program for the children and a babysitter for the young ones. That way parents don't have to bother about "who is taking care of my kids?"
Announcements: Announce the meeting in your newsletter, on posters on the ward and in the out- patient clinic, in local media and, if you have a membership list, send invitations to all group members. Inform the medical staff about the meeting a long time ahead so that they can tell the parents.

General medical topics: 

Disease related topics:
treatment of leukaemia, Hodgkin and non-Hodgkin lymphoma's, brain tumours, bone tumours, solid tumours, retinoblastoma, etc.
bone marrow transplantation in the treatment of ALL, neuroblastoma etc.

Psychosocial topics:

Other topics:

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