Notes from the editors

Though we are working on this winter issue of the ICCCPO news in December 2003, it will not reach you before the New Year has started. Nevertheless, we would like to send you all our best wishes for the year 2004 – may it be a good one for you all!

This issue includes some of the talks presented at the most recent General Assembly in Barretstown, Ireland. We are trying to get as many of these presentations as possible to be published (here and on the website). It was again a very intensive and educational meeting with a full program for parents and for survivors (who joined us for the third time). The survivors have given themselves a structure and a mission statement and have plans for the future (s. p. 8).

More than one hundred guests attended this year’s meeting, representing over 30 countries. The venue (the Barretstown Castle Gang Camp) was for all participants a very interesting place to visit and the hospitality of the “Barretstown Gang” could not be topped! We all felt very warmly welcomed and well taken care of and learned much about the camp program offered here. Special thanks go to the chef cook and his kitchen team who were able to meet all needs and tastes within no time.

Early along in 2003 the board had decided to separate the annual ICCCPO meeting from the SIOP conference which took place in Cairo as the board felt uncertain about the whole conference with respect to the then still ongoing war in Iraque. Barretstown seemed to have been a very good choice as it offered all the necessities for the meeting and a possibility for vivid exchange and contact among the participants as they all stayed on the compound for the entire time of the conference. Of course, we missed the exchange with other professionals in pediatric oncology, such as physicians, nurses, psychologists. This will be possible again in Oslo (Norway).

The General Assembly admitted 9 new member organizations, (8 full, 1 associate) from: Armenia, Bosnia Hercegovina, China (Hong Kong), Czech Republic, Korea, Paraguay, Russia (3 organisations), which means ICCPO includes now 65 member organizations from 52 different countries. We can be very proud about this development. And we can be very proud about the fact that we will be looking back on ten years of existing this coming Spring. There will be an official commencement in May in Spain along with a symposium by the Spanish confederation which inititated the inauguration of ICCCPO in 1994. And there are plans for celebrating these ten years along with the upcoming AGA meeting in Oslo, which again will be in conjunction with the SIOP meeting there. 

The ICCCPO board has changed as follows:

Marianne Naafs-Wilstra who served for 4 years as president stepped back from this position and Simon Lala (New Zealand) was elected chairman. Geoff Thaxter (UK) became vice chair and new member to the board is Irina Ban (Serbia) on the position of David Orren (Israel) who resigned. You will find the new list on the back of the newsletter.

Note that there will again be a celebration of the International Childhood Cancer Day (ICCD) on February 15th 2004 (more in this newsletter).

We wish you all a very good start into the New Year!

The newsletter-team

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Announcements

International Meeting in Valencia, Organized by ASPANION

27 - 29 May 2004,  with a program for parents and psychosocial staff on May 29.

On May 27 and 28 there will be the official Ten-Year-Celebration with a reception in the Town Hall and some other activities. For more detailed information please contact:

ASPANION.   Plaza Pablo Picasso, 9-3°D.    46015 Valencia

Tel. +34 963 47-1300 / Fax: +34 963 48-2754

Email: aspanion@ctv.es 

7th World Congress of Psycho-Oncology, in Copenhagen

25 - 28 August 2004

Theme: “Understanding Diversities – Development of Strategies for Psychosocial Oncology”

hosted by the International Psychology Society.  For more information visit: www.ipos2004.dk 

36th Congress of International Society of Paediatric Oncology - SIOP 2004, in Oslo, Norway

16 - 19 September 2004

For more information please contact:

Congrex Holland BV.    P.O. Box 302.    1000 Amsterdam,    The Netherlands

www.congrex.nl     www.siop.nl  

ICCCPO General Assembly 2004

A parent program as well as a program for survivors will be organized along with the SIOP meeting.

More details will follow later on this website.

3rd SIOP-Asia Conference Dahaka, Bangaldesh

26 - 28 February 2004:  

“Childhood Cancers is curable – Let’s build on our past”;  with a special program for parents

For more information contact: ashic@citechco.net   or   class@globalctg.net

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CANCER RESEARCH UK JOINS WORLDWIDE CAMPAIGN TO HELP CHILDREN WITH CANCER

CANCER Research UK will again unite with parents from 41 countries on February 15, 2004, to support the third International Childhood Cancer Day.

The aim of the day is to help children with cancer get the best possible treatment and care, no matter where they live in the world, by raising both awareness and money.

As support for the day grows, the organiser, The International Confederation of Childhood Cancer Parent Organisations (ICCCPO), is sure it will be even more successful than the last two years and raise more vital funds for the 250,000 children around the world who develop cancer every year.

Professor Alex Markham, Chief Executive of Cancer Research UK, says: “We are delighted to support International Childhood Cancer Day - such an important and unique annual event.

“We are committed to working on global initiatives and keen to do everything we possibly can to help the thousands of children around the world who have cancer. Every single one of these children deserves adequate treatment and care, no matter where they live and International Childhood Cancer Day is a fantastic way of raising awareness about this, along with vital funds.

“As a father myself I know how precious children are, so I urge everyone to support the day to help children with cancer all over the world.”

Marianne Naafs-Wilstra, Chair of ICCCPO, says: “We are delighted with the support and involvement for the third International Childhood Cancer Day.  There is a great need for basic access to treatment, emotional support and long term help and this special day enables organisations to provide for these needs.”

Geoffrey Thaxter, ICCD co-ordinator, says: “After the success of two previous International Childhood Cancer Days, everyone is fired up for the challenge of raising more funds, more awareness and having more fun with the aim of helping thousands of children around the world.”

If you would like to find out how you or your organisation can get involved with ICCD 2004, please contact Geoffrey Thaxter on 01737 555411 or email info@lisathaxter.org.

The International Confederation of Childhood Cancer Parent Organisations (ICCCPO) was founded in Spain in 1994. It has 56 member organisations in 46 countries.

ICCD is taking place in the following countries:

Argentina · Egypt · Italy · Portugal · Australia · France · Japan · Romania · Austria Finland · Latvia · Russia · Bangladesh · Germany · Lithuania · South · Africa · Brazil · Greece Luxembourg · Spain · Bulgaria · Iceland · Malawi Sweden · Canada · India · Mexico · Switzerland · Columbia · Indonesia · Morocco · UK · Croatia · Iran · Netherlands · Ukraine · Cuba · Ireland · New Zealand · USA · Denmark · Israel · Nicaragua · Venezuela · Norway · Yugoslavia.

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Our own "Heroes"

Parents devoting their time in self help initiatives for children with cancer are “heroes” per se. There is no question. They do this all over the world. Only, very seldom this is recognized by the media in general. Thus we include this article from the Reader’s Digest Canada magazine on Christine Wandzura, as we feel that more parent group leaders should be recognized for their valuable work. Christine is just one very good example.

The board is proud about its "heroes" and congratulates Christine Wandzura!

Reader’s Digest Canada launches annual award to celebrate extraordinary service to others

Montreal, June 24, 2003 – Reader’s Digest Canada today announced that its Canadian Hero of the Year for 2003 is Christine Wandzura of Calgary, founder of the Kids Cancer Care Foundation of Alberta (KCCFA). An article in the July 2003 issue of Reader’s Digest profiles the magazine’s first Hero of the Year, outlining the story of her work on behalf of children living with cancer. The magazine inaugurated the annual award to celebrate the many Canadians whose heroic efforts make a real difference in their community and in the lives of others.

"I was absolutely shocked when I was told that I would be the first Reader’s Digest Canadian Hero of the Year," said Christine. "I am truly honoured by this wonderful tribute and I would like to thank those at Reader’s Digest Canada who felt that my efforts are worthy of hero-status. I hope that I can inspire others to dedicate themselves to a cause or effort and make a difference in their communities."

Prior to starting the KCCFA, Christine struggled to deal with the loss of her son Derek, who was diagnosed with brain cancer at age five and died four-and-a-half-years later. The summer before losing Derek, Christine had taken her son to a camp in British Columbia for children with cancer and was inspired by her son and the campers who relished every opportunity to play like other kids. Christine felt very strongly that a similar camp should be created in Alberta. After Derek died, she helped the Canadian Cancer Society organize sending 43 kids to a camp in Kananaskis, just west of Calgary. While this was a major step in the right direction, Christine felt that much more could and should be done to help kids in need. With this determination, Christine quit her full-time job to dedicate herself to raising funds for a series of camps for children with cancer throughout Alberta. Christine’s Kids Cancer Camps of Alberta was launched in the summer of 1995 and in 1997 summer day camps in Calgary and Edmonton were established. In 1999, Christine expanded the organization’s mandate to include fundraising for pediatric oncology research and clinical support.

"Christine’s determination to make a difference, her energy and her drive, and the results she achieved are truly inspirational," said Murray Lewis, editor-in-chief of Reader’s Digest Canada. "She’s an extraordinary person and an example for others. Celebrating and sharing stories like hers is part of what we do at Reader’s Digest and it’s exciting to be able to recognize the heroism that Christine embodies."

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Announcement - SIOP Psychosocial Guidelines

Dear members, dear parents,

For several years, ICCCPO has been involved with SIOP in the writing of psychosocial guidelines to assist children with cancer and their families. The guideline theme for this year’s SIOP meeting in Cairo was: “LISTENING TO THE (DYING) CHILD”. Although ICCCPO was not present at this meeting, input from ICCCPO is most welcome.  

This year the committee recommends a different approach from previous years. Rather than merely listing guidelines for listening to the child with cancer or leukemia, the meeting this year consisted of a discussion of examples of what it means to truly listen to a child, based on actual conversations and responses we ourselves had with the children. The goal was to start a process by which in the next couple of months the committee would collect stories and examples of truly listening to the child, organize the best of these into a unified form, and use the final product as a basis for discussion at the next SIOP meeting (in 2004 in Oslo, Norway).  

To help the committee prepare a working draft for the 2004 Oslo meeting, we ask each ICCCPO member to collect and send us by the first week of February examples of four or five actual conversations between a child and an adult in his/her environment (parent, physician, nurse, psychologist, social worker, other health care professional), followed by a judgment of the “listening” adequacy of the response, and a suggested alternative response. We are not limiting the examples to children in the terminal phase, but wish to have examples from the treatment phase as well.  

We would like each example to follow this format:

a   the question (verbatim) that the child asks (or statement the child makes), and the circumstance in which the child asks/makes it;

b   the response (verbatim) of the adult (parent, physician, nurse, social worker, psychologist, other health professional);

c   a judgment of whether or not the adult’s response was truly “listening” to the child; and

d   a suggestion for what a more appropriate “listening” response might have been.

Clearly, parts a, b and c will be easier to do than part d. It’s not easy to suggest an appropriate “listening” response. But it is part d that will give our guidelines their true value.  

Please send the examples in the suggested format by e-mail to: icccpo@vokk.nl 

We are looking forward to receiving your responses, so that we can prepare a proposal to the writing committee. The goal, ultimately, will be to publish the best examples, as we have done with our past “guidelines.” 

Thanks in advance.

Sincerely,

Marianne Naafs-Wilstra,

ICCCPO Executive Committee

SIOP Working Committee on Psychosocial Issues

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Book Reviews:

CANCER IN YOUNG ADULTS:  Through parents’ eyes

by Anne Grinyer

Facing a diagnosis of cancer and possible death in their children is a nightmare for all parents. When the patient is aged between 18-25 – an age group when cancer is rare - the psycho-social problems that arise may differ from or assume a new importance from other age groups. But because there has been little research on the subject, the difficulties encountered by families are frequently not well understood.  

This book is designed to bridge the gap. Following an appeal in various newsletters, several parents submitted informal, written accounts of how they experienced their adult children’s illness to the author. Even though the survey does not claim to be representative, the author has clearly identified topics such as loss of independency, questions of fertility and sexuality and ownership of medical knowledge as being of central importance to this age group. The impact of illness of a young adult on family life, siblings and marital relationships is also looked at closely.

Each topic-related chapter consists of three parts. The first tracks the different stages of one mother’s experience whilst her son George was suffering from osteosarcoma. Part two expands her thoughts with extracts from the material submitted by other parents and the last section offers in summary a more theoretical viewpoint. The result is a digestible reference guide, leaving the reader free to skip or dip. The book is geared mainly towards the professional health carer, but its unique blend of personal narrative and theory also makes excellent reading for interested parents.                  

        Review by: Sue Grant

OUP, Facing Death Series, UK Ed. David Clark,  2002, £19.99 (paperback), £60.00 (hardback)

ISBN: 0-335-21230-1 (pb) and 0-335-21231-X (hb)

Palliative Care for Children with Cancer - A Guide for Parents

by: Michelle Noyes and Helen Irving

Brisbane: Royal Children’s Hospital, 2002

A very helpful guide for parents and caretakers in support of the most difficult time in the life of a child with cancer.

Copies of this guide can be ordered from:

Rebecca Rieson · Managerial Assistant.   Haematology, Oncology & Stem Cell Transplant Unit

Royal Children’s Hospital, Brisbane.    Herston Road, Herston · Queensland 4029.   AUSTRALIA

PH: +61 7 3636 1357, FAX: +61 7 3636 9051

Beneath the Tree of Kindness: Me, my illness and the Family House

Family House, a non-profit organisation in Japan that provides accommodation at minimal cost for families caring for their chronically ill children, recently published the book Beneath the Tree of Kindness: Me, my illness and the Family House.  

Family House was launched by the parents association of the pediatric ward of the National Cancer Center Hospital and members of the medical profession. It has been operating houses where families with children of incurable diseases, such as pediatric cancer, who have come from distant locations can stay while they attend their children. It currently operates seven such facilities with a total of 37 rooms.

The book, was published in June. Some children who return to their schools and communities after having endured the ordeal of treatment discover with shock that their friends do not understand what they have come through. The book was produced in the hope of helping these children to be warmly welcomed back into society and of letting more people know about Family House.

Family House devised a unique system of distributing these books to schools across Japan. They call on people to “adopt” a copy of the book by donating in units of 2.000 yen, and for every 2.000 yen contribution, they send a copy to an elementary, middle or high school in Japan in the donor’s name.

M. Naafs

Published by:   Family House.   4-19, 2-chome, Higashikanda, Chiyoda-ku.   Tokyo, 1001-0031 Japan

e-mail: jimukyoku@familyhouse.or.jp.   Web Site: www.familyhouse.or.jp

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