Greetings from the Chair

This year promises to be an exciting one for ICCCPO and for parents organizations throughout the world. Many challenging and growthful opportunities lie ahead of us.
We look forward to two major ICCCPO-sponsored events where parents of children with cancer from different nations can gather and share ideas with one another. On September 4-6, 1998 ICCCPO will hold its annual General Assembly in Frankfurt, Germany; several presentations and workshops will focus on parents' needs and on ways of organizing and maintaining parent groups. On the 5th of September elections will be held to decide the composition of next year's ICCCPO Board. On October 4-6, 1998 ICCCPO will co-sponsor with the Children's Cancer Association of Japan a series of meetings in conjunction with the International Society of Pediatric Oncology (SIOP), in Yokohama, Japan. Several days of parent meetings will deal with psychosocial support systems, children's cancer camps, bereavement and survivorship, and special workshops for parent group organizers.

Members of the ICCCPO board have also travelled to parent conferences in several other nations during this past year. I personally have visited parent groups in Venezuela and New Zealand, and other Board members have visited parent groups in Southern Africa and Eastern Europe. As a result of these meetings and visits our membership continued to grow: now 25 organizations representing 23 different nations are members of ICCCPO.

We also are pleased with new developments in an increasingly cooperative relationship between ICCCPO and SIOP. Physicians involved in the SIOP leadership have invited ICCCPO representatives to speak at SIOP meetings, submit abstracts for presentation at these meetings, and themselves to attend our sessions. We anticipate that these physicians will be very helpful in our efforts to make contact with parents and parent organizations in other nations, especially in South America, Africa and Asia.

We would like to hear from you. We would like to hear about the successes of your parent organization. We would like to know what problems your parent organization is facing - or what problems you are having in forming a parent organization. We would like to know how you think ICCCPO can help you and other parents in your nations. Write to us. Fax us. Call us. Email us. Attend some of these meetings where other parents, from other nations, discuss how to solve universal problems facing parents of children with cancer. Together we can make a difference across the globe. 

Mark Chesler, Chairman

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Program of the ICCCPO conference and General Assembly Meeting in Frankfurt (Sept. 4-6, 1998)

Parent groups for children with cancer: an ongoing process

Frankfurt/Main (Germany).  Wilhelm-Poligkeit-Institut, 
Heinrich-Hoffmann-Straße 3, 60528 Frankfurt/Main

In some areas of the world support groups for parents of children with cancer are just emerging while in other areas they are already well established. But everywhere it is a daily learning process. We learn from our own experiences as well as we learn from each other. This conference is meant to help those who are starting for a better beginning as well as those who are already working over a long period of time to redefine their own situation.
Your questions as well as your personal expertise are wanted to make this conference a fruitful exchange of ideas. You will find that ICCCPO is an organization worth joining and be part of the growing process.

Friday, September 4, 1998
ca. 13:00 attendants arrive  (welcome & refreshments)
visit of parent house / hospital
15:00 - 18:00 introduction by Mark Chesler, ICCCPO Chairman (USA)
   Presentations:
   Effective communication (Nel Warnars-Klaverlaan, NL)
   School reentry (Marianne Naafs-Wilstra, NL)
   Siblings programs (Bernd Mirbach, Germany)
   Fundraising for non-profit organizations
20:00 Dinner (perhaps in a typical local restaurant)

Saturday, September 5, 1998
09:00 - 12:00 workshops covering topics such as:
   Recruitment and attendance of parent groups
  Leadership / Program activities
   Fathers' groups / Bereavement groups etc.
13:00 Lunch
14:00 - 19:00 General Assembly Meeting
   Election/replacement of several board members
   (complete agenda for member organizations will follow) 
20:00 Dinner (perhaps wine tasting)

Sunday, Sept. 6, 1998
09:00 - 12:00 Presentations: (e.g. clown doctors) / Board meeting closing with or after lunch, departure

The language of the meeting will be English (translation in work groups possible)
Any suggestions to the program are still encouraged and welcome, please send your brief abstract to Gerlind Bode, DLFH, Joachimstrasse 20, 53113 Bonn, Germany (Fax +49 228 9139433).
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SIOP/ICCCPO Yokohama

We would like to inform you of our preliminary plans for the parents meeting at the 30th.congress of the International Society of Pediatric Oncology (SIOP) in Yokohama, Japan in October 1998.
This year, as in the past, ICCCPO and the local host, the Children's Cancer Associaton of Japan (CCAJ) will organize a parents meeting during the SIOP conference. 
Ø Parents are welcome to attend only the parents' sessions, without paying a registration fee; they can register with CCAJ, 13 Ichigaya Hachimancho Shinjuku, Tokyo 162. Japan, fax + 81 3 5228 6107, att.: Mr. Keiji Iwata. 
Ø Parents who wish to attend other SIOP sessions must pay the registration fee of US$ 300, prior to May 15, 1998; they can register with Imedex, PO Box 3283, 5203, DG 's-Hertogenbosch, The Netherlands, fax + 31 73 641 47 66. Please indicate on the form you are a parent or representing a parents group. Payment of the registration entitles you to attend all scientific sessions as well as the opening ceremony and the annual dinner.

The program at a glance:
 Sunday, October 4 
  Morning: Panel discussion Long term survivors
  Afternoon: Panel discussion Psychosocial support for bereaved families
Monday, October 5
  Afternoon: School programs
Tuesday, October 6
  Morning: Workshop on support groups 
  Afternoon: Workshop on oncology camps

For more information call or write to: Marianne Naafs-Wilstra, Achterdijk 85
NL 3985 LA Werkhoven, Netherlands, tel. + 31 343 551969, fax + 31 343 551969. E-mail: mcnaafs@worldaccess.nl (see also Announcements)

Travel - Scholarships
If you would like to attend the General Assembly meeting but cannot afford the travel expenses, please let us know and apply for a travel scholarship. There is a limited amount of money available for this purpose, which means that only one scholarship per group can be allocated. On your application please indicate the estimated price for your travel expenses (economy fare in US$) and send it to the secretary in Sweden (Barbro Eriksson, Grevgatan 39, S-11453 Stockholm (FAX +46 8 6603107) and to speed things up, a copy to the secretariat in Canada (s. addresses of board members) 
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Suggestions from a teen group
Do ...
-  Be honest. Tell us the truth about the illness, and explain to us the best you can about treatment.
-  Take each day and treatment as it comes.
-  Consider telling our brothers and sisters what's wrong, taking their age into consideration.
-  Listen to us, even when we are not talking.
-  Help us maintain some independence. We still have the same personal needs as other teenagers.

Do not ...
-  Overprotect. Teenagers are more resilient than you may think.
-  Try to shut us off with "Everything will be okay". We still have our worries and want to ask questions.
-  Neglect our siblings.
-  Be afraid to talk to other parents who have gone through the same experience.
           (Reprinted from the CanTeen Newsletter, Ireland)
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How safe is our blood?

It is estimated that over half of the children with cancer will require blood or blood products at some point of their treatment. Children are still being infected by hepatitis B, C, HIV or AIDS because of unsafe blood. Of course, the risk depends on the strictness of the regulations in your country and might be very low. In general, parents whose children require transfusions have several options. We recommend that parents ask their doctors the following questions:
§ Is the transfusion absolutely necessary?
§ Is an alternative therapy available?
§ Can I, as a parent, make blood donations?
§ What are the techniques to minimize blood loss during the surgery that my child requires?
§ What are the risks associated with blood transfusions?

You can do more:
§ Ensure that your child receives the right blood: know his blood type en check the blood that is hung.
§ Each time, document the date and amount of the blood infusion your child receives. 

Marianne C. Naafs-Wilstra
Adapted with permission from the Newsletter of Candlelighters Canada, Contact, Vol. IX, No. 3, Fall, 1997.

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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 pediatric oncology team, parents and parent organizations worldwide 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 is 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 you from joining the international confederation. If your organization 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. 

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! 
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