First International Childhood Cancer Day:

4 out of 5 children denied cancer treatment

This shock statistic was revealed by ICCCPO at the launch of the first International Childhood Cancer Day in January. 

An estimated 250,000 children develop cancer each year worldwide, but 80% do not have access to treatment available. Most children's cancers are curable and if the necessary resources and expertise were available across the world, more than 100,000 lives could be saved each year. 

In developed countries, where survival rates are particularly high, more than 70 per cent of children with cancer are still alive 5 years after diagnosis. But because so many countries lack adequate cancer care facilities, the world's overall survival rate is as low as 20 per cent.
ICCCPO was founded to try to improve this situation. It aims to aid the flow of information about childhood cancer, campaign for better access to treatment and support the needs of young cancer patients and their families. 

Marianne Naafs-Wilstra, chair of ICCCPO said, "Every child with cancer deserves a chance to live. Together we can give them that chance". 

Here is what some professionals around the world had to say about the International Childhood Cancer Day: 

Prof Vaskar Saha of the Cancer Research Center UK: "The International Day is an important opportunity to highlight the inequalities in treatment across the globe". 

Prof Giuseppe Masera from Italy: "The members of the larger childhood cancer family need to work together to increase the partnership initiatives between centres from developed and low income countries" 

Prof HansPeter Wagner of the International Society of Paediatric Oncology supported the event by pointing out the need for "early diagnosis and referral for treatment". 

Andreas Ullrich of the World Health Organisation explained "parent organisations play an important role in advocacy and care programs". 

Ian Magrath of the International Network for Cancer Treatment & Research: "The International Day will encourage all those who work in support of children with cancer". 

Events took place in 30 countries to celebrate this first International Day. Information is being collected about the events in each country, but here are some highlights: 

UK: In the UK, events took place at St James in Leeds with celebrations in the Children's Unit, at Alder Hey in Liverpool with Everton players visiting, and at Adenbrooke's with a presentation to doctors and nurses by the parent organisation. The London launch by CRUK and ICCCPO was covered in four national newspapers, SKY and local Radio.

Bangladesh: A human chain of children, doctors, parents and volunteers in Dhaka paraded in the city to raise awareness of the day. Gifts were distributed to children with cancer at two hospitals and a shelter. In Chittagong there was a further colourful rally involving school children and volunteers.

Iceland: A huge pop concert was held in Reykjavik on 13th with eight groups and musicians with all proceeds going to the parent organisation - SKB. The parent organisation also gave computers on 15th to the hospital school room. Both events provided good coverage on national TV, press and radio.

Netherlands: The Dutch Parent Organisation released, on 15th, the Arabic translation of "Chemo-Kasper", a book to help children and families understand cancer treatment.
Romania: The National Comedy Club put on a charity concert in aid of the parent organisation.

Russia: In St Petersburg, a party, special food and gifts was arranged for the children in hospital on 15th and for outpatients and families on 20th.

India: In Chandigarh there were painting competitions for the children in hospital, a seminar attended for families and professionals, and a rally of schoolchildren.

Greece: The government announced financial support for the parent organisation to coincide with 15th, in support of a new hospice the PO had built. A seminar to raise awareness of childhood cancer was also organised.

Other countries taking part were: 

Argentina; Israel; Australia; Italy; Austria; Luxembourg; Mexico; Canada; Morocco; Colombia; Croatia; New Zealand; Finland; Portugal; Germany; South Africa; Spain; Indonesia; Switzerland; Iran; Ireland; Yugoslavia. 

For more information contact Geoff Thaxter at thaxter@lttrust.freeserve.co.uk

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International Library

The ICCCPO's library originally began in 1996 by the Childhood Cancer Foundation ~ Candlelighters Canada located in Toronto, Canada. After nearly seven years of stewarding this project and writing the first bibliography that contains all the publications, the time has come to move it to another location and under the management of another member organization. This collection will remain in Canada but has traveled to the western part of the country to Calgary where the Kids Cancer Care Foundation of Alberta will be its new home. Please send your books, newsletters, pamphlets or any special videos or other publications that your organization has produced to:

ICCCPO International Library
c/o Kids Cancer Care Foundation of Alberta
#205, 609 - 14 Street NW
Calgary, Alberta T2N 2A1
Canada

Along with your publication please include in English a brief outline of what this publication or video is about. It will be included in the next issue of the bibliography that will eventually be available on the ICCCPO web page. Thanks for helping to make this library a completely international project that can benefit many parents in many countries. Our sincere thanks goes to the staff of Candlelighters Canada for all its work on the library and for helping it to thrive during its early stages of development.
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Help for Children with Cancer from Italy

Parents of children with cancer and professionals from all over Italy met in Milano in a national conference to celebrate the 1st ICCD. The Italian Federation (FIAGOP) who promoted the Conference decided to dedicate the day to raise awareness on the situation of children with cancer in low income countries who are denied not only the possibility to be treated but also the hope to be cured. A number of parents associations and pediatric cancer units presented their ongoing programs of international cooperation with poor countries comparing experiences and results. The outcome of the Conference was the launch of the program "5% for Hope" through which Italian parents associations of children with cancer will contribute to international cooperation programs giving 5% of their annual income. 
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A Parents' Initiative in Crimea, Ukraine

Eugene Novitsky,

We are a voluntary community. However there is hardly anyone who would join us voluntarily. 'Us' means those parents, whose children suffer from different forms of leucosis and other oncological diseases. This unites us. 20-25 children in Crimea are annually stricken with acute leukemia, 10 with lymphogranulomatothis, 10-12 with lymphoma (lymphosarcoma). 

Before IT happened in our family, we considered leucosis (the same as leukemia or blood cancer) to be an incurable disease that kills quickly and tortuously. From our school days, we remember the story of a Japanese girl who did not complete the thousand paper cranes she was making for the doctor who had promised her she would recover. Today, however, leucosis is treatable. Not always, though, and with varied success. Yet we have realistic hope.
In 1991, the parents of 10 year old Alex Ametov issued a national call and thereby gathered enough money to take the boy to Germany. Another girl, who should have gone with him died two days before the day of departure. That half official trip started a new stage in the lives of three hematologists from the Crimean Republican Children's Hospital - the Chief of the Department, Valentin Usachenko, and Olga Ivanova. The father of the dead girl gave all collected money to the hospital and said to Usachenko: "It would be better you go, and then you will cure our children here."

What happened afterwards you may know from this newspaper article:

"Crimean pediatric hematologists are some of the first to master the methods of German specialists on the treatment of leucosis and to be successful in their work. Using modern methods of treatment, they have a high survival rate among those children who had been considered terminal - 70%. Before 1991, it had been only 3%. 

The leading German hematologists Schellong and Reiter started to support the Crimean doctors and helped them with medicines. The results of the first three years were up to the ones in German hospitals That is why the Crimea has one of the best hematological departments in Ukraine. 

Since April 1993, Professor Schellong has been leading the work of a leukemia group that includes 9 Ukrainian Departments. Doctors from Simferopol sit on the Board of Directors. Today, under the guidance of Doctor Reiter, the staff of the Hematological Department of the Crimean Republican Children's Hospital is developing a new program for Ukraine, thus becoming the main center of research for a form of malignant non-Hodgkin's lymphoma and its treatment". 

Now about us, the parents: The "Parents' Initiative" was the "connecting link" that allowed Simferopol to discover the German methods and specialists. We organize holidays for the patients and are looking for finances, medicines (finding them is not such a problem, you have to manage to get them!)

The moment our kids become patients our families enter into a new life. Lots of things we had never thought of or known before become the reality of everyday life. We (mostly mothers) go to the hospital along with our children and stay there during the whole course of treatment which is about 7-9 months. Now we talk and even joke about things that before would have been thought of as nightmares. We do not have to LEARN how to be together - no time for that, we have to BE together, supporting, encouraging and clinging to each other. What we never thought before or did not want to think, or had doubted is becoming so glaringly obvious and clear now that there is no need for words to either express or prove anything.

Our children are aware of their diagnosis and it's severity - and that is right. No matter how old a person is he has to fight his disease consciously, knowing how dangerous the enemy is. When we get into the hospital (the first week is especially hard for us, parents) we are given a book "What is leukemia?" This book has been translated from German and contains cheerful pictures, drawings by kids, who went through the whole severe course of treatment. So we and our "brains" are reading this page-turner (paradox?!..) and a detailed story of the origin of the disease and the ways it will be treated ...

By the end of the first week we realize the break down of our preconceived notions of leukemia. We are not in a death department. They come here to fight for life, armed by an unflinching determination and a hope to win. Realizing what is wrong with them, our kids are more tolerant of the pain and other unpleasant ways the body reacts to the complex treatment. They get used to the IV and do not cry when they are hooked to it for a day or two or even a week. Thus, this little book and those who surround us - doctors, nurses, caretakers - give us a precious gift of hope. 

Not all of our children survive the treatment. We do remember that; and remember those we will never see again. Yet against all the odds we hope and believe - and will believe tomorrow again. 

Eugne Novitdky
coordinator of the Crimean "Parents' Initiative"

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The Day of the Cured Children 

Anniversary: 10 years since the BFM-protocol was established in Crimea

It is an annual tradition in the hematological clinic to celebrate "the day of the cured children" on June 1st. It is so nice when it is a USUAL thing for children who have suffered leukemia - blood cancer - to get healthy!

But this year it was a special holiday, an anniversary. 10 years ago the staff of the hematological clinic under the chief-doctor Valentin Usachenko has first started using the German medical anti-leukemia program BFM (Berlin-Frankfurt-Munich). So instead of a huge rate of deaths we had an incredible number of saved lives: 75%.

Those whose lives were saved at the clinic, have come here for the holiday. There were lots of them, the hall was overcrowded. Tons of flowers. Applause when the doctors walked into the hall. They have helped each of these children to stay alive.

A lot of children have already grown up. More and more of them come to this annual holiday with their own children. Now there are not only their parents beside them, but their mates. A new adult life has started. But they cannot forget what they've undergone here, in the clinic, during long months of suffering.

The nurses helped the children who are treated in the department now to get down to the hall. They wear gauze bandages, they're still weak and don't have hair. But they have shining eyes looking at those who have already won over the disease: "We will also be able to make it through!" This year Lena Lifanova, who was the first patient to be treated from leukemia on the basis of this German program in 1991, came to the holiday.

The holiday started with games for children organized by the psychologist. Then there was a concert given by dance-groups. And then the real excitement for the audience came: the clown Tolyan (Anatoly) is everybody's favorite - children's and adults', patients' and doctors' and of the guests of the clinic. This time the circus artist Anatoly Lyadnov brought with him a whole team of young gymnasts and jugglers from the circus. They presented their short program 'Circus, circus, circus!'

Then they went to the ward to entertain those children who were not able to get down to the hall to join the holiday. This time Tolyan even went to the reanimation department to visit a girl who was undergoing blood-cleaning. He entertained everybody who was with her by walking on his hands.

And can there be a holiday without presents?. Finally it was their turn: candies and oranges to raise the mood, books to wander with their characters, and funny "speaking" clocks.
There were 16 children and teens who have received the "Diplomas of former patients". They were those who went through the treatment 5 and 10 years ago. Among them was Masha Vasilenko who came to this holiday with her one year old child.

Many guests came to celebrate this holiday with us: hematologists from Kiev and Lviv. There also came professor Guenter Schellong from the German city of Muenster. He is one of the leading European hematologists. Thanks to his efforts we are able to accomplish complex and expensive anti-leukemia treatment in Ukraine. Still, the German professor wasn't let just to sit still and enjoy the concert. The clown Tolyan took him out to the stage and put on him a funny wig and nose. The holiday was filled with joy and laughter. This is the day of our victory.

The preparations for the celebration were done by the hematologists along with the members of the "Parents' Initiative". 

The celebrations came to the end, but life goes on. What will it bring these children? In many ways it depends on us adults, depends on our readiness to help other people in their trouble, depends on how each of us is able to love others, which means to cut off one's own pleasure to help somebody else out. That's what is really difficult! But can we live without that? 
People were leaving the clinic with presents in their hands and smiles on their faces. They carried with them their 'diplomas' that they received from Valentin Usachenko's hands. They won't forget the words written there:

Defeating hell and pain for the sake of future life,
You are the winner in the deadly struggle.
Let be your life as bright as the summer sun,
The road you chose, be even brighter,
Destiny may save you, dear child!
Live a long and happy life but don't forget.

Marina Strogaya
Andre Trofimov
Crimea, Ukraine
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Events and Announcements

5th Continental Meeting of SIOP in Africa.  

Yamoussoukro, Côte d'Ivoire (Ivory Coast).  April 14 - 17, 2002

Cure of Children with Cancer in Africa: The Challenge of the Third Millennium

For more information contact: Mokhtar el Harras.  E-mail: mokhtar@acdim.net.ma

7th International Conference on Long-Term complications of Treatment of children & Adolescents for Cancer 

Niagara-on-the-Lake, Ontario, Canada.  June 28 - 29, 2002

For more information contact: 

Diane Piacente (Conference Coordinator)
Dept. Of Pediatrics
Roswell Park Cancer Institute
Elm and Carlton Streets
Buffalo, NY 14263
Tel. (716) 845-2334

Email: Diane.Piancente@roswellpark.org.   www.roswellpark.org 

ICCCPO-SIOP meeting 2002 

In Porto (Portugal)  16 -18 Sept., 2002

The dates for this year's ICCCPO conference have been tentatively set to begin Monday evening September 16 to Wednesday September 18. The SIOP meetings will also begin on September 18th and continue on through to Saturday September 21, 2002.

In preparation for this meeting which is to take place in Porto, Portugal, you find information regarding the registration and abstract form which on-line at the following address: www.congrex.nl/siop2002/update1.html  All presenters within the ICCCPO portion of this meeting are encouraged to submit a formal abstract in order that it be considered within the parent's section of this meeting. 

This Congress Update provides you with congress information of general interest and information from the SIOP 2002 Congress Secretariat and Local Organising Committee.
This first issue contains the Call for Papers. It provides you with the electronic abstract form and guidelines and instructions to assist you in submitting your abstract.

In addition, this first Congress Update contains the electronic Registration Form, if you wish to participate in the full SIOP meeting. I strongly encourage as many representatives from our members to attend the full meeting as it provides outstanding networking, learning and opportunities to give valuable input during the joint-sessions with oncologists, nurses and psychologists from all over the world.

Please forward this message to all your parent groups and colleagues in the field of Paediatric Oncology.

Any questions regarding the Call for Papers, or the Registration Form, please contact:
CONGREX HOLLAND BV
T:+31 20 5040208
F:+31 20 5040225
Siop2002@congrex.nl

For more information regarding the ICCCPO conference, please contact Christine Wandzura.  ICCCPO Secretary General and Chair, ICCCPO Porto Conference
e-mail: wandzura@kidscancercare.ab.ca

2nd SIOP - ASIA Conference

New Delhi, India.  November 22-24, 2002

The 2nd SIOP-Asia conference, a prestigious milestone in pediatric oncology, is being held in New Delhi, India, from November 22 - 24, 2002, under the auspices of the International Society of Pediatric Oncology (SIOP), the Pediatric Hematology Oncology Chapter (PHO) of the Indian Academy of Pediatrics (IAP), the International Confederation of Childhood Cancer Parent Organizations (ICCCPO), the International Network for Cancer Treatment and Research (INCTR), the Indian Society of Medical and Pediatric Oncology (ISMPO), and the All India Institute of Medical Sciences (AIIMS), New Delhi.

The conference aims to bring together pediatric oncologists, hematologists, pediatricians, surgical oncologists, radiotherapists practicing in the developing world, on a common platform with leading pediatric oncologists and health care professionals from around the world.

The increasing participation of parents in such conferences is very reassuring and we especially seek their company to ensure a successful meeting. With the central theme being "childhood cancer is curable", the conference is committed in forging better links between parents and healthcare professionals. We are optimistic that parents and parent organizations will participate enthusiastically in this conference. In all, the blend of ideal weather in November along with the rich cultural heritage of Delhi City will make the scientific environment richer than ever.

For further information please contact: 
Prof. L.S. Arya (Organizing Secretary)
Department of Pediatrics
Division of Pediatric Oncology
All India Institute of Medical Sciences
Ansari Nagar, New Delhi - 110 029, India. 
Tel: 91-11- 6523147, 6594610; 
FAX: 91-11-6862663 
E-mail: lsarya@aiims.ac.in,lsarya@rediffmail.com. www.aiims.ac.in

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Books

Sibshops 

Workshops for Siblings of Children with Special Needs

Donald J. Meyer & Patricia F. Vadasy
Paul H. Brookes Publishing Co, Baltimore
ISBN 1-55766-169-3
www.brookespublishing.com

Siblings who do have brothers and sisters with special needs or health concerns, like cancer, have needs of their own - needs that are often overlooked. Growing up with a disability or life-threatening disease in the family is often stressful and unfair. But it can also be a source of inspiration.

This practical resource details Sibshops, the award-winning programme that brings together 8- to 13-year-olds to express their good, and maybe not so good, feelings about having siblings with disabilities. Sibshops seek to provide siblings with opportunities for peer support. The programme is designed for school-age children and is therefore provided within a lively recreational atmosphere so that children have fun while they learn. Sibshops are not therapy, group or otherwise, although their effect may be therapeutic for some children. They acknowledge that most siblings are doing well, despite the challenges of an illness or disability.

From start to finish this illustrated book describes how to organise a Sibshop… It is a practical guide for teachers, psychologists, parents and other professionals to provide much needed support that encourages learning, sharing, and having fun.

The book is not cheap, but highly recommendable.

Marianne Naafs-Wilstra

Infos … news … miscellaneous …

The Lisa Thaxter Trust in the UK just funded  a website for siblings under: www.siblinks.org 

Long-term Effects of Cancer Treatment: 

A guide for patients and families

by Drs. Margaret Zacharin, Karin Tiedemann and Maree Sexton 
is avaible at Miranova Publishers
PO Box 1041.  Camberwell.  Victoria 3124.  Australia

Book details and prices can be obtained from the www.welcome.to/miranova

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