The President’s Message

This year marks the 10th anniversary of our organisation and one we can be proud of both as parents and as health professionals.

From our humble beginnings in 1994 with a membership of only 5 countries, we have now grown to over 60 countries covering all parts of the globe. However there are so many more we need to reach out to, and we seek your help in this.

We acknowledge the contribution every one of you has made to the parent groups in your own country. Time and energy as well as your expertise are a valuable gift and one which we appreciate greatly.

The ICCCPO mission states that every child shall get access to the best possible treatment available in his/her country.

Twinning becomes invaluable – we are seeing more and more programmes between developed and underdeveloped countries. It is great to see increasing cooperation between countries: The sharing of resources, wealth, information and expertise can only improve the outcome for children who suffer from cancer. These are good initiatives and we acknowledge the generosity of the donating countries.

ICCCPO is also about empowering parents to become a well-informed voice in the treatment of children with cancer. Parents can then form successful lobby groups both at local government and on the international front. I believe ICCCPO is a powerful ally with SIOP in helping raise awareness of the plight of children with cancer. Proof of this was seen during our recent appeal to the United Nations which drew the attention of the IAEA (International Atomic Energy Agency).

With the combined efforts of SIOP and ICCCPO I believe we can secure funding for certain cancer treatments in developing countries.

Furthermore, the latest initiative of SIOP to seek the World Health Organisation’s endorsement for free treatment of ALL cancers is very timely. ICCCPO fully supports this and we will do whatever is in our power to ensure this becomes a reality.

The Parent sessions during this year’s SIOP/ICCCPO-meeting reflect many of these thoughts. It is also a wonderful opportunity to meet with delegates from all these different countries and share experiences as well as ideas.

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1994 – 2004:  ICCCPO’s Tenth Anniversary

The beginning of the international federation in 1994 was celebrated with an international symposium on childhood cancer organized by the Spanish confederation of parent initiatives (ASPANION) in Valencia. It made sense to commemorate the tenth anniversary again with an international symposium. Thus the Spanish confederation invited parents from Spain and speakers from abroad, as well as all present ICCCPO board members and those who had been elected to the very first board. Not all could come to attend these two days in May, but for those taking part it was a memorable event and a wonderful opportunity to meet again with Jesús M. Gonzales Marin, the driving force in the founding of ICCCPO as its first president.

All international delegates were invited to the Valencia townhall where ten years ago the statutes had been signed. This time they were received by the president of the Valencia province and the health minister.

Also part of this delegation was the present president of SLAOP (Society of Pediatric Oncology in Latin America), Dr. Sylvia Brandalise, who spoke about the situation of pediatric oncology in South America.

Many interesting talks were presented at the conference, which clearly demonstrated that much has changed for the better for children with cancer in Spanish hospitals. One very impressive example is the talk by Hortensia Dias Asper at the ICCCPO-conference in Oslo (s. p. 4) on the schooling of children in hospital.

The day was concluded with a wonderful dinner at one of the old restaurants in Valencia, where a Thank-you-basket filled with “typical” presents from the board members’ countries was handed over to the hosts.

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International Childhood Cancer Day 2004

This year’s International childhood Cancer Day saw ICCCPO appeal to Kofi Annan for help in getting equality in treatment for children with cancer around the world. Under the UN Charter on the Rights of the Child, every child has the right to life, treatment when ill, and rehabilitation.

A UN agency has responded to the appeal and ICCCPO along with SIOP are now in dialogue with them to see how the parties can work together in the transfer of knowledge and skills from one country to another. The appeal has also received support from a number of governments around the world.

Cancer Research UK has played a key role in raising the profile of this appeal in the media. TV and media coverage has helped to draw the appeal to the attention of agencies like the UN.

The International Childhood Cancer Day was celebrated in over 30 countries throughout the world. There were organised parties for children in hospitals, conferences, media coverage and fundraising events in support childhood cancer charities, both local and worldwide. A CD covering members events can be obtained by ICCCPO members from:

        Geoff Thaxter

        1 Betjeman Close, Coulsdon

        Surrey, CR5 2LU, England

        E-mail: thaxter@lttrust.freeserve.co.uk 

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Special announcement for the ICCD 2005

Through My Eyes: A Day in the Life of Children with Cancer Around the World

Have you ever wondered what the treatment of childhood cancer looks like from a child’s perspective? Doctors and nurses can treat their disease and carefully follow their progress. As parents we hold their hands, wipe their fevered foreheads and calm their fears while they walk this journey. But do we really know what they see or what they feel? We wondered and maybe you might have wondered too. Perhaps we think about their experiences because we are all intimately involved with their treatment and care either as health professionals, parents, siblings, or loved ones.

The International Confederation of Childhood Cancer Parent Organizations (ICCCPO), the International Society of Paediatric Oncologists (SIOP) and the SIOP Nurses Committee are collaborating on a project that will show us what the children and teenagers see and perhaps feel. It will help us better understand what they are going through, what is important to them and provide us with their point-of-view… if even for a fleeting moment in time.

This is how your treatment center or parents’ group can participate in this very important project. On February 15, 2005 – International Childhood Cancer Day, we would like you to place cameras into the hands of children with cancer and ask them to take pictures of anything they like (in the out-patient or in-hospital setting). It is important to us that the children take the photos and that the photos are taken on February 15th so we can all witness what the world of childhood cancer looks like on that one day – throughout the world!

We would like you to choose the most telling and illustrative photos and email or post them to the project organizers at: 

    Email: through-my-eyes@kidscancercare.ab.ca

    Through My Eyes: A Day in the Life of Children with Cancer Around the World

    c/o Kids Cancer Care Foundation of Alberta

    Suite 205, 609 – 14th Street NW

    Calgary, Alberta T2N 2A1 CANADA

We must receive these photos by email or the photos (with negatives) by post, no later than March 15, 2005 so that they can be arranged for display.  

These photos and the accompanying statements will become a part of a permanent collection so we will not return the photos or the text. Therefore, please make copies of them prior to sending them to us. If you need assistance in paying for the film, developing or postage, the project sponsor will pay for reasonable expenses with receipts.

The photo exhibition “Through My Eyes” will be shown at the next meeting of SIOP/ICCCPO in Vancouver in September 2005. The photo exhibition may, over time, become a beautiful published book that could help to educate, inform and publicize the status of childhood cancer throughout the world. The value would be extraordinary and it may be useful to many developed and developing countries as a form of public awareness.

For more detailed information contact the ICCCPO website or Christine Wandzura c/o Kids Cancer Care Foundation of Alberta (see above).

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Presentation of a newly elected ICCCPO member - UNAPECLE

UNAPECLE (Union nationale des associations de parents d’enfants atteints de cancer ou de leucémie) is a French national parents’ confederation, established in June 2003 and cosisting of different regional organizations whose main objectives are:

-  Unite, federate and promote French Childhood Cancer Parent Organisations in order to coordinate their common actions

- share the know-how of those organisations

-  be one unique voice towards the French government for the health conditions and human services

-  Create and favour better communication on scientific, medical matters and inform about childhood cancer

We count 19 organisations and among them 12 are in the committee and five in the executive committee administrated by our Chairman Philippe Unwin.

UNAPECLE has different working groups:

- School integration

- Paediatric Medicine

Relation with the Health ministry:

- we are contributing to the National Cancer Plan created by J. Chirac in 2003

- Know-how and experiences exchange

- International relationship with ICCCPO

- We meet every quarter in different towns of France where the federate members are located.

UNAPECLE is now one year old. We are very happy to exchange with you and hope that we shall bring you our French experiences and take great lessons from yours.

    Cécile Galzy

    UNAPECLE.   354 Route de Ganges   34000 Montpellier, France

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Book Reviews: 

A Time to Live.  A Message of Love and Hope in a Fight for Life

by Claudia L. Chamorro

Published in Spanish by Editorial Hispamer. Managua (Nicaragua), January, 2003

Tolentino was a Nicaraguan child who, upon being diagnosed with leukemia when he was ten years old in September of 1991, traveled with his family to the United States in search of medical treatment — a treatment that ultimately required a matching bone-marrow transplant. A transplant donor could not be found owing to the lack of a wide-ranging register of potential donors, and Tolentino died in the U.S. in April of 1996.

Tolentino’s greatest concern upon finding out that he would die as a result of his illness, was his realization that he wouldn’t have the opportunity to study, to go to college, to develop professionally and thus be able to contribute to society. His greatest anguish was that he would leave his mother behind in the deepest sorrow, and that he didn’t know anyone in heaven. His aspirations, the dialogues about death that he had with his mother, their intent to find sense in the irrational, and other details about the dramatic experience of this child are recorded in A Time to Live. 

So far, this text is only available in Spanish. The author (Tolentino’s mother) would be interested in contacts that could help her to translate and publish this book in other languages.

If I Get to Five: What Children Can Teach Us About Courage and Character

By: Dr. Fred Epstein and Joshua Horwitz

(available through Henry Holt and Company.  115 West 18th St., New York, NY 10011.  www.henryholt.com 

Dr. Epstein and writer Joshua Horwitz relate the unforgettable experience Dr. Epstein has shared with children and the lessons he has learned from them. Stunningly, Epstein meditates on these lessons at a time when they parallel his own struggles. Some time ago Epstein suffered a near-fatal head injury while bicycling that left him in a coma for twenty-six days. As he gradually returns to life during a year of painstaking rehabilitation, he shares with the readers the journeys of his young patients and his own remarkable saga.

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I am writing to ask for your help

I am a licensed clinical social worker as well as a bereaved parent. My daughter was 8 years old when my son died very suddenly. He was 11.

I am now doing my Ph.D research on sibling death and parental support and I am hoping that you can help by alerting people to the study. I am looking for adults of at least 18 years of age who were between 8 and 13 when their sibling died from any cause, at any age. If you know of anyone who fits the above criteria, I would appreciate your alerting them to the research study. The questionnaires can be accessed over the web at www.sibgrief.com. Those without internet access can write to me at:

Susan Rabinaw, LCSW, 183B Nassau Street, Princeton, NJ 08542, USA, or fax me at +1-609-921-1007

and I will mail the questionnaires to them with postage paid return envelope.  Thank you for your help.

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A new computer game that battles cancer cells

The object of the game is to destroy all mutated cells and to collect the seven shields that provide protection from common side effects of chemotherapy. The shields are guarded by “monsters.” The game can be downloaded from: www.makewish.org/ben

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