Notes from the editors

This year, ICCCPO commemorates its tenth anniversary. It was in May of the year 1994 that the statutes of the newly created organization were signed in  Valencia (Spain). This event will be celebrated during an international conference – again in Valencia – on May 27 - 29, 2004 (s. also announcements, p. 12). A special celebration of this tenth anniversary will be included in the ICCCPO meeting in Oslo (Sept. 16 – 19, 2004). The program of this meeting and the invitation to the AGA will soon be circulated to all groups and can also be found on www.icccpo.org. We are preparing a commemorative booklet reporting on those first ten years, which will go out to all member groups after the Valencia meeting.  

This newsletter issue is relatively heavy on words as we were lucky to get the permission for the reprint of several contributions from renowned magazines. But it also includes reports from different groups throughout the ICCCPO-world – and it is always refreshing to hear about the various activities, mostly reported with a lot of enthusiasm and energetic spirit. We also love to receive pictures showing those events to include them with the texts. Unfortuneately, they are often of pure quality and connot be reproduced. So, don’t be too disappointed, if your pictures are not picked up in the newsletter, it is usually simply for technical reasons. Please keep on sending us your contributions.

The International Childhood Cancer Day was celebrated again in many countries with various events. A summery of all these activities will be collected again on a CD and be given to all groups interested in the ICCD. It seems that slowly this date is accepted by the public and the media – and maybe one day also by the UN.

We hope we will meet many of you at any of the up-coming events and will be able to talk and discuss with you all the common issues ICCCPO people share.

We would also urge you to inform us immediately of any address changes (name, street, tel-no, email) as it is essential to be updated in order to keep a good communication going. Thank you.

Best greetings to all of you

Gerlind Bode (for the editorial team)

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Our trip to Stockholm

From November 4th to 6th, eight people from our organization traveled to Finland and Sweden. For the children that was a big adventure: a trip by car from St. Petersburg to Helsinki and then by sea from Helsinki to Stockholm. Everyone was on the ferry for the first time. The children studied the 11 floors of the ferry, bought souvenirs in the shops, admired the view from the deck. Stockholm has surprised all of us by its beauty and singularity. We walked around the city center. The children took photos of the most interesting places. We had time to visit the museum of Astrid Lindgren and the Skanska Muset.

We want to say many thanks to the organization Langinkosken seurakunta and personally to Pentti Holi for the help and attention!

Olga Semenova

Co-ordinator, NGO ”Children and parents against cancer”.  Saint-Petersburg, Russia

In Karlson’s world

Hurrah! I traveled to Sweden, more exactly, to Stockholm. On the 4th of  November, early in the morning, all of our group ”Children and Parents Against Cancer” went to Finland. Though it took a long time it was not dull at all on the way, because we knew each other. When we arrived at the Church in Finland we drank hot tea and got onto the bus that took us to Helsinki in 2-3 hours. The bus stopped at the sea port, near two enormous ferryboats. One of them was ours. Then we received keys for our cabins. They were not simply keys, but special magnetic cards. Four people slept in each cabin, which had a shower and a toilet.

We crossed the Baltic Sea. Our ferry-boat had 11 floors! There were shops, playrooms for children’s games, machine cabins, plenty of everything. We arrived at Stockholm the next morning and walked to the center of the city, to the King’s Palace. To be frank, we didn’t see the King and the Queen, but we saw the royal guard - royal guardsmen. Then we strolled around the streets of the Old City and went to visit the museum of Astrid Lindgren. There were so many interesting things on display, though the museum was rather small. After we had seen one half of the museum, we came to a train and went aboard. When the train started moving we heard some sounds in the corners of our car. We looked up and saw little figures, hiding up there, talking about something. They were from one of the fairytales of Lindgren. So we watched and enjoyed several fairytales of this Swedish writer: Karlson, Emil from Leneberge, etc. It was cool!

Then we returned back to our ferry-boat, crossing the Old City again. We returned back home by the same way. When we were back home it was November 6th.  I noticed one interesting thing about time in all those three countries: When it is 20.00 in Russia, it is 19.00 in Finland and it is 18.00 in Sweden. I liked this trip so much.

Pavel Astashkevitch

12 years old, Saint-Petersburg, Russia

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From Macedonia

Dear friends,

In the spirit of the recent Christmas bliss, a step before New Year’s Day, I would like to wish you happiness, good health and success in the coming year.

Talking about nice matters, the presentation of the booklet we translated from the German version was a significant event in the oncology ward of the Children’s hospital in Skopje. In the presence of parents, members of medical staff and friends the leader of department, Prof. Muratovska, spoke well of the initiative. She said that through the written word the everyday experiences on the ward can be made easier.The simple language used for explaining the disease and its treatment makes this book readily acceptable by the parents. The 200 copies of this booklet were given by our parent association to the department of oncology, with the basic aim to make this book available to all parents confronted with the problem of childhood cancer.

With deep hope that our collaboration will go on,

I send my best wishes to you.

Natsha Kotlar-Trajkova

Skopje, Macedonia

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Conference for families and patients

Our traditional annual conference dedicated to the problems of cancer children and their families in Sumy region ”You are not alone” was held on the 5th of  December, 2003.

Among the participants of the conference were cancer children, their parents and relatives, journalists, doctors, nurses, representatives of Sumy local administration - all who are not indifferent to the problem.

The main target of the conference was to push the interests of cancer children and their families to attract the attention of the community to their problems. The participants got a chance to learn more about cancer. The families of the cancer children discovered that they are not alone and there are others who experience  some of the same pain, there are people who support their children, give cancer children the chance for life. A lot of words of gratitude were addressed to the sponsor of the project ”Children’s pain”  Austrian Kinder-Krebs-Hilfe - an only organisation which supports this life-asserting programme and made cancer children appropriate treatment accessible.

The atmosphere of the conference was very sincere and emotional. Long-term survivors, very beautiful young boys and girls, talked about their experiences and shared their wisdom with others. The results were amazing: many cancer children and their families became more optimistic and left the conference with the feeling that they are not alone!

Svetlana Shut

Charitable fund ”Viden”.

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Finding a way to help as much as we can

Starting with big greetings from Bosnia and Herzegovina and the Association ”The heart for the kids with cancer in FBiH” (Srce za djecu koja boluju od raka u FBiH) we would like to inform you about the forthcoming events here in Bosnia and Herzegovina with regard to the ICCD day 2004. Namely, in cooperation with the Chamber of Economy of FBIH we are preparing a great Fashion show in the Grand Hotel in Sarajevo. At the same time we will have the presentation of our work (we are a very young Association - founded in April 2003 with the help of our ”twin association” from Luxemburg – thanks to Marie Marthe Bruck Clees and Francois Schoentgen). We will show our brochures, calendars, greeting cards, etc. and expect a lot of people from the diplomatic core (ambassadors in BiH) will come as well. The representative of BiH, Mr. Paddy Ashdown, supports this event. There will also be entertainment (such as music) and we are expecting to inform the public in Bosnia and Herzegovina about the problems all of us are facing in the fight for the lives of cancer sick children in our country.

You can find more about the association at: http://srcezadjecu.freewebspace.com

Invited by NURDOR SCG (National parent Association of cancer sick children of Srbija and Montenegro), our delegation will be visiting Belgrade with the following goals:

    1. Finding possibilities to increasing the cooperation with the clinics in Sarajevo and Belgrade.

    2. Strengthening the already existing cooperation with the Srbija and Montenegro Association.

Please, consider this as the letter of gratitude for becoming a member of ICCCPO at the annual meeting in Dublin and in the same time to show that we are all working to the same end – to find the way to help our little fighters as much as we can. Once upon a time we were kids. We are trying to help them to help us in becoming better people in society.

Sabahudin Hadzialic

Member of the Supervision board

”Srce za djecu koja boluju od raka u FBiH”

Sarajevo.  Bosnia and Herzegovina

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Book Review:  "Living With Childhood Cancer".  A practical Guide to help Families Cope

by:  Leigh A. Woznick and Carol D. Goodheart:

Washington: American Psychological Association, 2002 (ISBN 1-55798-872-2, $19.95)

Like a natural disaster, the diagnosis that your child has cancer can leave you and your family feeling helpless …

   -  How do you explain the disease to the child and his or her siblings?

   -  How can you communicate your child’s needs to hospital staff?

   -  What are the best ways to reduce the physical side effects and emotional distress of treatment?

   -  How will you, you child, and the rest of your family cope, and what can you do to help?

   -  When and where do you find good psychological help for your child or your family?

   -  How do you manage financial and school issues?

   -  How can you foster your child’s development and self-esteem?

These and more questions are raised and answered in this very comprehensive book, which is a valuable source of information – equipped with a long list of resources (literature as well as websites) – for families as well as care givers.

Gerlind Bode

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