A few words by the editors
This issue of the newsletter will be distributed shortly before the General Assembly meeting in Ireland (at Barretstown Castle). You will find the program included here and might take it with you and we hope to see many of you at this meeting. Please note that there is again a meeting for survivors scheduled along with the ICCCPO program. 
With this issue we are sending you a package of interesting articles on a variety of topics. We hope you find much of interest for you. We would also like to encourage you all to send us your own contributions: articles, reports, book reviews, poems, pictures, letters, announcements - anything you would like to share with others or think important for other groups. This potpourri of contributions adds color to our magazine and makes it special. 
With best greetings and wishes
Gerlind Bode
(for the editorial board)

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International Childhood Cancer Day 2003
The second International Childhood Cancer Day took place on 15th February. The event was organised by ICCCPO with the outstanding support of Cancer Research UK. 
38 countries took part this year raising awareness of the 250,000 children who get cancer every year in the world. The event also raised an estimated $100,000 to support the work of parent organisations around the world.
The official launch took place in London and was attended by Marianne Naafs-Wilstra (ICCCPO Chair) and Sir Paul Nurse (Chief Executive of Cancer Research UK). Celebrities supporting the launch were Joan Collins, Rachel Hunter and The Cheekie Girls. Tony Blair also endorsed the International Day at a meeting in Downing Street with ICCCPO and Cancer Research UK representatives.
In many countries parties and celebrations took place for children in hospitals. This proved to be a great way to raise awareness and to make it a joyful day for the children. 
In Russia the pop group Russian Size played for the children. In Italy a football team of cured youngsters played in a match to commemorate the day. In Finland a photograph exhibition of children with cancer was launched and is now touring the country. 
Many countries also held media conferences and seminars bringing together families, doctors and NGOs that provide support. These conferences provided information about the needs of children with cancer, and the media with an opportunity to help raise awareness.
A CD containing full details of events in each country will be available in July and will be sent automatically to all ICCCPO member organisations. This is designed to share ideas between parent organisations all over the world.
ICCCPO and Cancer Research UK are already making plans for international support on February 15th 2004. Initial details will be announced at ICCCPO's Annual Conference in late September. In the meantime, member organisations are encouraged to start planning their own events to make this event even bigger and better in 2004.
For more information contact Geoff Thaxter at info@lisathaxter.org 

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ICCD 2003 in India

This year, International Childhood Cancer Day was celebrated at the department of Pediatrics at the Postgraduate Institute of Medical Education and Research (P.G.I) in Chandigarh on Saturday by Sahayta Cancer Sahyog in collaboration with ICCCPO and cancer Research U.K. A Painting Competition was organized by Sahayta on 14th of Feb. in the Pediatric Oncology Department of the hospital to bring cheer into the lives of children touched by cancer. The children made paintings portraying various moods of childhood. Free gifts were distributed to all children. We also had a support group from Vivek high School in Chandigarh. These children painted on the theme "Cancer afflicted children need your friendship, support and not pity." They came up with beautiful ideas. The best message was "Your friendship can help them live up." 
On the 15th of Feb. 2003 students of St. Stephen's School did a rally to create cancer awareness among residents. Colorful balloons were let off in the air by various volunteers and students and we were joined by Kanwal Thakur Singh, an Arjun award winner in sports. The motto of the rally was "empathies and not sympathies". The rally was flagged off from the sector 17 plaza by the Head of Oncology Division in the department of Pediatrics, AIIMS, Dr. L.S Arya, and was led by UT chief architect Renu Saigal, herself a survivor. The rally was received by the PGI Director, Dr. S.K Sharma, and School principal Harold Carver after it reached the Advanced Pediatric Centre at PGI. A brief introduction to the International Childhood Cancer Day was given by the President of the Sahayta Cancer Sahyog, Mrs. Neelu Tuli. The function was compered by Kanika Mohan a sibling of Nitya, a 13 year old leukemia survivor. She has been featured on the website of Cancer Research, U.K and has also been featured in the media release by ICCCPO with her message: "When the going gets tough, tough gets going". 
The cake was cut by the Nitya Mohan on this occasion and a lamp of hope, empathy, courage was lit by the director PGI. Sovenier was released by Dr. L.S Arya which contained paintings and drawings by children touched by cancer. It also had national and international messages for this day. Professor S.K Sharma, Dr. Arya and principal Harold Carver applauded the work done by Shayta in India and extended their full support to the organization. Prizes were distributed to the winners of the Painting Competition. The report of Sahayta Vatsalya Sahyog was presented by the volunteer Aradhana Mittal. After tea, a meeting of the doctors, Childhood survivor's their parents and volunteers of Sahayta Cancer Sahyog was organized to share their experiences. Dr. Marwah and Dr. L.S Arya answered the queries regarding childhood cancer. It was an informative interactive session. The function was concluded after that and it gave lots of support to parents and brought the cheer in the lives of our little ones. Words of thanks were proposed by Dr. Amita Tehran.
Neelu Tuli 

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ICCD in Indonesia

The ICCD in Indonesia went very successfully. We had many events, such as 
- a hospital visit to the pediatric oncology ward, sponsored by McDonald's and Unilever.
- a seminar for parents in Surabaya, where we helped and encouraged the parents to start an organisation. Approx. 100 parents attended.
- a One-Day-Course for young doctors/practitioners, nurses (with accreditation for practitioners). This was in corporation with Dharmais Hospital, Jakarta, and the Faculty of Medicine, Indonesian University as well as the doctors from our medical team. About 100 young doctors and nurses came from Jakarta and surroundings.
- a One-Day-Camp with children (out-patients) and their families (parents and siblings). This event was sponsored by Cancer Research UK and Bouraq Airlines (local airline). We held this event at Bouraq Resort in the mountains. We had a drawing competition, dancing, singing, playing together and finally some time for parents to share their views with the board of our foundation. One doctor and two nurses came along with us.
Fortunately Prof Dr. P.A. Voute (The Netherlands) could come from Surabaya where he was one of the speakers at the SIOP Course in February 2003. We had arranged hospital visits to the General hospital in Central Jakarta (Army hospital Dr. Gatot Subroto) and a hospital in southern Jakarta (Fatmawati hospital) for him.
Ira Soelistyo
Indonesia

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Book Review: Sophia’s Children

by Sarah Wong

Published by: Duo / Duo, Rotterdam.  duoduo@xs4all.nl.  ISNB 90-72971-70-1.  2003 The Netherlands

Recently in The Netherlands a most beautiful book has been published: Sophia’s Children, a photo book with text in Dutch and English.

Photographer Sarah Wong walked for more than two years with her camera and other equipment through the Sophia Children's’ Hospital in Rotterdam. Other people who see the hospital from the inside have a function: they are doctors, nurses, psychologists, play therapists. Their function opens the gateway to intimacy. Sarah had no function, she was merely a photographer. She had to create her own role and so she did by waiting patiently until the children gave her a role.

The children took the opportunity to express themselves in front of the camera. It gave them back the control over their own world, to show their strength and beauty, despite the circumstances.

Sarah: “The everyday reality of the Sophia Hospital is surreal and had an enormous impact on me: the doctor on a scooter along the corridors or children upside down above the bed, tied up with their drip holder, a child pinching the doctor’s nose. It was a new world for me. And hopefully also for people looking at this book of photographs. The children in the Sophia are my star actors within a futurist world of pipes and racing cars. They proudly show off their plasters and drips as if there was nothing wrong. I am very proud of them and the faith they put in me by posing for me.”

Review by: Marianne Naafs-Wilstra

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7th Austrian Symposium on Pediatric Nursing

10 Years of Home Care Oncological Nursing in Vienna

Home care nursing for children and young adults with cancer

Call for Papers

The 7th Austrian Symposium on Pediatric Nursing will be held in Vienna on 15/16 April, 2004. The focus is on home care nursing programs for children and young adults with cancer, the topic honoring the tenth anniversary of the Vienna-based home care oncological nursing service. The symposium organizers are the Kinder-Krebs-Hilfe – Elterninitiative für krebskranke Kinder (a parent initiative supporting children with cancer) and the Berufsverband Kinderkrankenpflege Österreich (Austrian Association of Pediatric Nurses).

The aims of the symposium are 1. to share international experiences concerning home care nursing of young patients with cancer (or any other serious or chronic medical condition), and 2. to draw out perspectives for the future.

We’d like to invite you to submit proposals for papers on any of the following topics, in the context of home care nursing of children and young adults with cancer or similarly severe medical conditions:

-  the advantages and disadvantages, from the perspective of the patients, their siblings and their parents.

-  the constraints and opportunities, from the perspective of physicians, nursing staff, psychologists and therapists.

-  the constraints and opportunities for palliative care at home of children and young adults.

-  models for financing innovative approaches to home care nursing.

-  case management and coordination in pediatric oncology.

-  the specific professional demands placed on physicians, nursing staff, psychologists and therapists.

-  supporting home care by giving parents responsibility for nursing- and treatment-related tasks (e.g. catheter care)

-  overcoming the problem of large distances between home and hospital; opportunities and constraints for external care teams

-  health economics.

-  health policy aspects; national and international perspectives.

Abstracts should be between 1,000 and 1,500 characters in length (equivalent to about 15-25 lines) and the submission deadline is 15th September, 2003. Where possible, please submit via email to office@kinderkrankenpflege.at and be sure to include a short bio, plus your address, telephone and fax number. Submissions by fax or normal mail should go to “Berufsverband Kinderkrankenpflege Österreich BKKÖ”, Postfach 35, 1097 Vienna, Austria, Fax +43–1-479 64 00).

We will let you know whether your paper has been accepted by mid October, 2003.

With best regards,

Maria Jesse, President

Berufsverband Kinderkrankenpflege Österreich

Fritz Hausjell, Deputy Director.  Kinder-Krebs-Hilfe – Elterninitiative für krebskranke Kinder

Symposium office:

Berufsverband Kinderkrankenpflege Österreich BKKÖ

Postfach 35, 1097 Vienna, Austria

Tel. +43 - 1 - 470 22 33.   Fax +43 - 1 - 479 64 00

office@kinderkrankenpflege.at.   www.kinderkrankenpflege.at.   www.kinderkrebshilfe.at

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3rd SIOP-Asia Conference in Dhaka, Bangladesh with regional ICCCPO Parent Meeting

February 26-28, 2004 

More information can be obtained from: Salma Choudly, Chairperson ASHIC.  chairman@betsbd.com

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