News from the Editors

SIOP Asia-meeting

Ever since Prof. Arya from the All Indian Institute of Medical Sciences in Delhi (India) got in contact with the international parent work at the Frankfurt-meeting (in 1998), it was his desire to initiate parents' activities in India and to invite parents from all over India to a conference similar to the ICCCPO-meetings.
The second SIOP-Asia conference held in November 2002 in Delhi was such an opportunity. It was the first pediatric oncology conference in India that included a very extensive parent program. Parents from all over Asia were invited to join and share their experiences. Four delegates of ICCCPO were involved in desinging the program and chairing the meetings together with representatives of Sahayta from Chandigarh. It became to be a very interesting two days of intensive work, talks, reports, presentations, workgroups, round table discussions - and not to forget social events.
We learned a lot from our Indian hosts, most important for us was to understand that many issues which are "normal" in our surroundings are viewed totally different in the Indian context. Here, we were told, cancer is still considered to be a stigma, especially cancer in children. Often families fear to talk about their children even though they survived the disease as they may be cut off from social interaction and their children may be considered not fit to be married. A young woman, a survivor of a Hodgkin's disease, broke into tears while reporting about her disease. She was sure that she will never find a husband after what she had been through.
We heard about the work or many courageous groups such as Sahayta and others who support families in need, or bereavement, counselling individuals and groups and providing palliative care. We learned that survival rates (especially in leukemias) have increased considerably, that is why the theme of the conference was "Childhood cancer is curable". We tried to support the positive aspects and assured those still hesitant to keep on in their wonderful and rewarding work.
The next SIOP Asia meeting in Bangladesh will again include a parents' program (s. announcements).

Survivors meeting

This newsletter issue reports about the new tradition of including survivors meetings along with the annual ICCCPO meetings. For the first time we will send the newsletter to all addresses of survivors known to us - thus giving them a possibility to be included in the international network. Should you know of any person in your group interested in receiving the newsletter regularly, please inform us about his/her address. There will also be a special section on the website designated for survivors issues. 

ICCCPO AGA-meeting 2003

Due to the ongoing war in Iraq, the ICCCPO board decided at its most recent meeting to seek a venue other than Cairo for this year's AGA meeting. It decided to accept the offer from the Barretstown Camp in Ireland to use their facilities for this meeting, as well as the survivors meeting which will take place at the same time. Please note that this will mean a change of dates: Oct. 2-5, 2003 (instead of Oct. 6-8)! All news about the registration and program will be found on this website as soon as arrangements have been made (go here).  

International Childhood Cancer Day
Was celebrated on February 15 with great success in many countries. We will report more specifically about this event in the next newsletter.

     Gerlind Bode
     For the editorial board

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Back to School Kit

A Back to School Kit designed to help children with cancer ease their way back into the school environment has been introduced in Canada. The kit contains four cases of materials aimed at children in the following age groupings 5-7, 8-10, 11-13 and 14+. Each contains books, videos and interactive games that explain childhood cancer, its effects and how others can help the patient. Classrooms can keep the kits for one month. The kits are distributed by oncology nurses, social workers and/or community liaisons to schools in their area and many of these will also speak to the class and teachers to introduce the resources and help facilitate discussion in the classroom. 
"We have collaborated with many oncology professionals who are already running school re-entry programs in their local areas. Our program is a great hit with many of them as they now have resources they can leave with the class after their visit and the students and teachers will have time to process the materials," said Karen Herder who is responsible for establishing the contacts across Canada. 
The idea behind the kits came from a similar program initiated by the Dutch childhood cancer organisation Vereniging 'Ouders, Kinder en Kanker' (VOKK) proving that sharing good ideas can be of benefit worldwide. For more information contact Karen Herder, Program Coordinator Email: kherder@candlelighers.ca,  or visit www.candlelighters.ca 

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New books aimed at children with cancer

Candlelighters in America have recently added two new books to their resources collection, aimed at children diagnosed with cancer. The first, Chemo, Craziness and Comfort, My book about Childhood Cancer is by Nancy Keene and is aimed at children between 6 and 12 years of age. It is an easy to understand, comprehensive guide including a journal section at the back and pages for pictures and questions to be used by the child at the end of each chapter.
The second book, available in both English and Spanish, is The Amazing Hannah, Look at Everything I Can Do! This 28 page picture book covers all aspects of treatment as seen through the eyes of a preschool child being treated for cancer. Both books can be ordered from Candlelighters America www.candlelighters.org.  Email: info@candlelighters.org 
This article was reprinted with permission from the CONTACT magazine (Spring issue No.18, 2003), the magazine of UKCCSG and NACCPO, www.ukccsg.org/contact_magazine.htm

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Parent activities in Sumy (Ukraine)

I am very grateful for the attention to our charitable fund and our activities. We are engaged in the activities devoted to the children of the Sumy region who suffer from leukemia. The ”Viden-Fund“ initiated the opening of a pediatric oncohaematological department in Sumy (centre of the Sumy region ). At the end of 2000 we started our project ”Childrens’ pain“ under the financial support of the Austrian Kinderkrebshilfe and Caritas-Austria. 

We are financially supporting children with leukemia. Unfortunately, the rate of leukemia in childhood in the Sumy region is higher then anywhere else in the Ukraine. Thanks to the project the children get treatment in time, there are no cases of the refusals of treatment due to financial problems in the families of sick children (before the project started it happened very often, since the total income of a family with a sick child is appr. 30-40 Euro but the medicine costs much more than that). 

The project gave these children new chances for life and we are very happy and optimistic about it. At the moment we take care of 28 patients. 

On the 5th of December, 2002 we organized a very interesting educational conference for the patients and their families. 100 participants attended: 35 children with cancer, their parents, doctors and journalists. We made very interesting reports concerning the problems of cancer in children. We gave the opportunity for parents to express their feelings and talk about their problems. After that all the participants of the conference were invited for lunch where we continued the discussion. We prepared very nice gifts and big food packages for each sick child.  

We were very happy when the parents told us that for the first time they felt that they are not alone! It was the highest award for us.  

Svetlana Shut

Director of charitable Viden Fund

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Events

17th Asia Pacific Cancer Conference

October 8 - 11, 2003 
Discovery Kartika Plaza Hotel, Bali, Indonesia (organized by: Indonesia Society of Oncology)

The theme of the conference is "Improving Basic Oncology and Its Clinical Application for Better Cancer Control in the Asia Pacific Region". The Scientific committee has been arranging in such a way, that various interesting topics on oncology will be presented in order to make a valuable improvement in the Asia Pacific region.
We do hope that by attending the conference everyone involved will gain new information, knowledge and experience as well as exchange views.
Should you need further information in details regarding the event, we will be glad to send you our 2nd Announcement. Send your complete address, telephone and fax number, or contact us at apcc17@cbn.net.id  for further information.

Evert DC Poetiray, MD/ President of 17th APCC
Soehartati Gondhowiardjo, MD, PhD/ Secretary General of 17th APCC
Phone: +62-21 392 8829.   Fax: +62-21 392 8829 or 62-21 315 4175 

ICCCPO Annual Meeting in conjunction with a survivors meeting 

October 2-5, 2003.  Barretstown Camp, Ireland

Information about registration and program can be obtained from this website. Go here.  

SIOP 2003 - 35th Congress of the International Society of Paediatric Oncology
October 8 -11, 2003 (Cairo, Egypt)

Main theme: Comprehensive supportive care of the child with cancer.
Royal Nile Tower Hotel, Corniche El-Nil, Cairo, Egypt
Please register through www.siop.nl 

3rd SIOP-Asia Conference
February 2004

Shabag,Dhaka - 1000, Banglasdesh
Fax +88 02 8015576
Email: paed@bangla.net  or mamood@agni.com 

Young Adult Survivors Conference (YASC)
August 15-19, 2003, Montana (USA)

A 4-day retreat designed to address issues of survivorship, to provide information and tools for self-advocacy and to build bridges of support between young adult cancer survivors who may be experiencing similar journeys through life (for 28-25 year old patients and survivors).

For more information please contact: Camp Màk-a Dream at +1 (406)549-5987 
or e-mail: camp@montana.com  or visit their website: www.campdream.org

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Children for children

    St. Petersburg

This was the motto and mission of the charity performance organized jointly by the Children's Dance Company "Rossiyanochka," the Department of Pediatric Oncology and Haematology of the Saint Petersburg Hospital No.31, and the regional non-government organization "Children and Parents against Cancer". 

On December 16th, one of the biggest concert halls of Saint Petersburg, the Music Hall for more than 2000 people, organized a second charity concert with the Children's Dance Company "Rossiyanochka" together with about 60 children (age 6 to 18). Young beautiful actors in spectacular costumes performed dances from many countries around the world to the greatest enjoyment and storms of applause by the audience. These wonderful actors are famous all over the world, have many prestigious awards, received at international festivals. And this day they danced to make cancer patients, their parents, doctors, medical professionals and volunteers happy. 

They do not have performances in St. Petersburg very often these days. Thus, it was even more important was that this was already the second charity event for the Department of Pediatric Oncology and the parent initiative "Children and Parents against Cancer". The aim of this event was to raise awareness in the general public and to inform state officials, government and medical professionals about serious medical, psychological and social problems of childhood cancer and to use this event as a preparation for the 2nd International Childhood Cancer Day on February 15th 2003. 

The money raised by selling tickets was used to buy books, paint, crayons, albums etc. Right on the stage presents were given to the children, the patients of the haematological ward. The executive director of the regional parent organization presented a beautiful bouquet of flowers to the director of the Children's Dance Company on behalf of 200 members of their organization. The cancer children were very grateful for such a wonderful evening, full of joy and happiness and presented to the young artists pictures they had made while being treated in the hospital. 

Among the honourable guests were representatives of the City Government administration, the Commissioner of Children's Rights in Saint Petersburg, Mrs Ogneva L.D., and representatives of the consulates of Denmark and Finland. We would like to express our deepest gratitude to all those people helping seriously ill children. 

Katerina Kisseleva, Executive Director
Children and Parents against Cancer

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Standing on his own two feet

  by Sue Grant

    [Braiswick, England.  ISBN 1-898030-78-2.  This book is available in English and German].  

Foreword by David Clark, Professor of Medical Sociology, University of Sheffield, UK and Sister Frances Dominica, Founder of the Children's Hospice Movement. 

Written from the perspective of the mother - a British journalist living in Germany - this beautifully crafted, honest, extremely readable and occasionally humourous biography traces the life of her son Alexander, building up to his diagnosis of bone cancer (osteosarcoma) at age 20, the physical and psychological effects of his treatment, his preparation for death and how the family learns to survive without him. 

By the time the author describes the aggressive chemotherapy, surgery, her son's consequent disability and the serious disruption to everyday life, the reader already feels part of this bi-cultural family. The issues addressed, from initial denial, to communication with each other and with nursing staff, intensive pain control management and dealing with the life-stage problems of terminally ill-young adults and adolescent siblings, transcend the individual story. Unique, however, are the astute observations of the different healthcare systems in Britain and Germany.

When treatment fails, the book demonstrates the struggle to persuade the medical establishment that with the right sort of palliative care Alex's wish to die at home could be achieved. Those responsible for the care of the dying - of any age - would benefit from reading about how much it mattered to Alex and his parents that he should be able to remain in familiar surroundings. 

Central to the whole story is the personality of Alex, his drive to be independent against all the odds, not idealised by his family but loved completely. The reader watches him mature, accompanies him in his despair and rejoices when he and his family finally find peace of mind. 

This book will appeal not only to families who have lost a child/young adult to cancer, but is also highly recommended reading for healthcare professionals, palliative care workers, international cancer organisations, teachers and psychiatrists. 

The English version may be ordered from the publisher's website at www.author.co.uk/grant, or or through www.amazon.co.uk   or from www.suegrant.de .  

The German version (with a foreword by Dr. Marianne Koch) ISBN 3-00-010415-1 , is available at www.suegrant.de 

Looking for a book on childhood cancer in a specific language? 

Simply contact the ICCCPO International Library, hosted by:
Kids Cancer Care Foundation of Alberta
609 14th Street NW, Suite 205. 
Calgary, Alberta T2N 2A1, Canada

To update the bibliography, please send your books, newsletters, pamphlets, any special videos or other publications that your organization produces to Kids Cancer Care. Include (in English!) a brief outline about the content of those materials. All materials will be included in the next issue of the international bibliography (which can also be found on this website: go here).

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