From the Editors

Dear friends,

In September this year, we had a very successful conference in Geneva (Switzerland) with many members attending. You will find some of the presentations of the interesting program in this Newsletter. These and more can be downloaded from our website soon: www.icccpo.org. Many thanks go to Franzi Wursch of the Swiss organization who was responsible for the local panning. It all worked out so very well and the social program was great!

During the Annual General Assembly ICCCPO accepted 17 new member organizations: 12 full members and 5 associate members. Unfortunately the group in Latvia was removed from the list as we lost contact to the group (no response to our attempts for several years now). This brings our membership to 97 member organizations from 61 countries.

The board reported about the establishment of the “World Child Cancer Foundation” (WCCF), an extremely exciting initiative of ICCCPO with the objective to improve the access of care for children with cancer in low income countries. WCCF will become the fundraising arm of ICCCPO. The ICCCPO General Assembly approved an interim board of WCCF.

Having the ICCCPO-meeting always along with the SIOP conference gives the important opportunity to network and work with the professionals: doctors, nurses and psychologists of SIOP, but also with WHO and UICC - both based in Geneva. We had joined sessions with the nurses and psychologists of SIOP and a session with the physicians on “The Inequality of Treatment and Care within Europe.” The Executive Committee and other ICCCO committees took the chance to meet with the board of SIOP international, the board of the PODC and SIOP Europe.

All in all this was a very productive meeting - but no time to rest: In October, some of us attended the workshop “Cure and Care after Childhood Cancer” in Erice on the Italian island Sicily (more about that in a later issue of our newsletter). And preparations for other meetings have started: Ira Soelistyo is planning a “Regional Meeting for Asia” on Bali, Irina Ban will organize two regional meetings in East-Europe. Christine Wandzura started the preparations for SIOP 2007 in Mumbai (India) and Gerlind Bode had the first negotiation for SIOP 2008 in Berlin (Germany).

Of course we will stay in touch with you via e-mail (so keep us informed of any changes!). And keep sending us your news, share your programs!

We wish you and your organisations a very prosperous New Year

Gerlind Bode

Marianne Naafs-Wilstra

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Survivors' Meeting in Geneva

In 2006, The ICCCPO Survivors' Network held a conference in Geneva: Switzerland saw 34 survivors come together from 16 different countries and 18 different organisations; countries represented were Austria (2), Canada (2), England (1), Finland (3), Germany (2), Greece (2), Hong Kong (7), Indonesia (1), Ireland (2), Japan (4), Netherlands (1), New Zealand (2), Philippines (1), Serbia (2), South Korea (1), Sweden (1).

Sessions at this year’s conference included joint sessions with the parent’s group, joint sessions with the Psychosocial and SIOP groups, sessions with the survivor group only, and a social activity with the survivor group, with a picnic lunch at the edge of lake Geneva, a visit to the Olympic museum, and a boat trip on the lake (via France!) on the way home. Session topics this year included more of a move towards understanding ourselves as leaders and the skills we illustrate in this.

Planning for the 2007 conference in Mumbai India is already underway. We hope to bring even more leaders together from around the world together to share ideas and inspiration and discuss issues applicable to survivors in different areas of the world as well as common issues we all face.

I would like to invite all survivor groups throughout the world to send a delegate to Mumbai 2007 and help strengthen the international network of survivor organisations.

I would also like to invite people who think they have a relevant topic for the survivor workshops or sessions to submit their abstract on the SIOP website; we are keen to expand and strengthen the network of information available at these conferences and worldwide.

And of course, I invite you to contact the network if you are a survivor group we haven’t been in touch with, or you are starting up a group in your area. We would like to help by sharing the networks we have created so far so that you are not alone in your efforts, but have others on the journey with you, who may just well have been there and done what you are trying to do now.

Now is an exciting time for the survivor network and we hope to keep you regularly updated via this newsletter on the networks we have created and improved upon.

If you have any questions or comments for the survivor network, please email me iccsnetwork@gmail.com.

Prudence Walker-Cuttance

Chairperson, International Childhood Cancer Survivor Network

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Does Cancer Stigmatize?

Surviving cancer in childhood - regardless of the possible physical consequences - leaves an emotional imprint, a deep one - just like the Danube which flows through our country. When having been hit by anything so forceful as cancer, which pulls your legs while you try to be calm and believe in recovery, then there comes the question: how can one cope and live with this history as a cancer survivor? The fact is you are not just “like the others”, since you had to struggle to stay alive and be lively. Putting yourself into the shoes of the person with an uncommon experience, you realize that the person is not only a name and a surname but somebody with certain characteristics, who is searching for an identity in this world. Surviving cancer is anything but common. A cancer survivor’s limits and horizons are simultaneously limited and expanded. This seems a paradox – but it is really like that.

I became sick at the age of eleven and was cured at the age of twelve. These were long months with chemotherapy, radiation, syringes, infusions and other things accompanying the disease. I got so used to syringes that nowadays getting an infusion is just like saying “hello”. On the other hand, I was afraid of the different machines such as X-rays, scanners and MRIs. All those fears and weaknesses that I had to face and overcome as a child appeared to be my teacher in later years. They taught me that these fears and many other problems could be overcome.

There is a prevailing general opinion that a basic fear of a survivor is the fear that the disease might relapse. I believe that two types of fear appear jointly: the one I mentioned already and a the fear of social rejection.

My reaction is: I introduce myself as a cancer survivor. This way I am honest to me as well as to others. I have always felt that this declaration of mine made in public clearly defines my personality: “I survived the cancer in my childhood. Presently, everything is OK; I am cured”.

Being a cancer patient does not only imply suffering and pain, drugs and hospitals. In a way, it is also surviving in spirit and mind, finding oneself in one’s life, either by slowing down or speeding up. The cancer - even once we manage to get rid of it physically - remains a seal, something that does not let you underestimate life. Quite the opposite, it enhances the joy for it. The disease made a turning point in my life. It has neither changed nor destroyed or scared me. It just stigmatized me (in a positive way?). I am the one that managed to survive the worst; I overcame the worst that could happen in life and I gained the possibility to enjoy life.

If somebody wishes to share the horizons and fears that are still to be overcome, I am here to give you a hand.

Dragana Licina, a student;  Belgrade.  Email: azizam@tehnicom.net

NURDOR – Survivors group.  ICCCPO – Survivors Board

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In Memoriam- Neelu Tuli

On October 26 Neelu Tuli, chairwoman of our member organisation Sahayta in Chandigarh, India, passed away.

Neelu founded Sahayta in 1997, after her sister was diagnosed with cancer.

It is due to her spirit and hard work that Sahayta has become successful in making a difference in the lives of so many families.

Some time ago Neelu herself was diagnosed with cancer. Nonetheless she continued to lead the organization. Her spirit and determination are an inspiration for all.

Our thoughts are with her family and friends.

ICCCPO Board and Newsletter Team

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First Pediatric Oncology Palliative Care meeting in Brazil

Palliative care in children with cancer should start from the point of diagnosis and should be a balance priority integrated with upfront therapy directed toward curing the patient. An interdisciplinary team should be present during all therapy. Cross cultural barriers are enormous and children with cancer are still suffering and dying with distressing symptoms. Lack of training at each level of education of all specialities is one important issue.

With this in mind, we organized a meeting in Sao Paulo Brazil, held on October 6th, 7th, 2006. This meeting brought together leading experts in the care of children during the terminal phase as well as experts in providing support to the family during bereavement. There were 83  participants from 6 different Brazilian states and 14 institutions. Nurses, psychologists, paediatricians, oncologists, internal medicine, pain specialists, physical therapists, pharmacists and volunteers attended the 2 day meeting.

Firstly the concept of shifting the focus of care was introduced. Treatment should include comprehensive care starting at diagnosis. Palliative care aimed at relieving symptoms and alleviating suffering should be incorporated during curative treatment all the way through cure and long term follow up or through the bereavement care period. It was emphasised that there is very little research in physical symptoms besides pain at the end of life. It was also pointed out that the lack of acknowledgement and education with limited exposure during medical school and residency training are factors that impair improving the quality of care at the end-of-life.

Secondly, a multidimensional patient assessment, including cultural, social, spiritual, physical, psychological, developmental aspects was discussed and an overview of the treatment/management of these symptoms (fatigue, sleep, dyspnea, gastrointestinal) was highlighted.  

Pain assessment and treatment was the third step reviewed. 

The following day emphasised communication to the patient, family and siblings as well as the care at the moment of death and bereavement. Burnout and withholding/withdrawing therapies such as hydration, nutrition, ventilation and cardiopulmonary resuscitation were also discussed.

There were four sessions on case discussions, presented by different institution representatives. It was a great opportunity to realise that the difficulties faced by most professionals dealing with end-of-life care are similar. Very interesting exchanges among all professionals occurred and the active participation of the audience as well as the experts turned into a unique opportunity for the multidisciplinary educational process proposed.

To end the meeting, programs on end-of-life education were presented (EPEC/ELNEC, USA) to enhance the need for further training.

Communication and listening to the children were the two most important concepts throughout the meeting.

The group felt that a Pediatric Palliative Care Network should be started immediately and that one of the keys to pediatric palliative care is functioning together (as a beautiful symphony) in an interdisciplinary way to attend to the suffering of the patient and family.

Andréa Y. Kurashima, RN & Beatriz de Camargo, MD, PhD    (Organizing committee)

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ASHIC Palliative Care Unit

I am highly pleased to inform you that ASHIC Palliative Care Unit was formally inaugurated by one of the leading paediatric doctors who is the National Professor of Bangladesh Dr. M. R. Khan. Unfortunately Dr. M. A. Mannan could not attend the function as he was suddenly diagnosed with Jaundice and needed rest. The function was attended by some 150-invited guests and a large number of media representatives. Our program was highlighted in local T.V. the same evening and good coverage was given in almost all the national dailies. Our activities started already on from 20th May, 2006. We are sending the social workers to different hospitals in the city to inform the guardians of terminal patients about the services being given by our PCU. It may take a week or so before we start getting patients regularly. I shall keep you informed about the progress in this matter.

Salma Choudhury   [ASHIC, Bangladesh]

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The Mansion for Children with Leukemia

They will never separate from their families.

LÖSEV- Health and Education Foundation for Children with Leukemia, which was founded eight  years  ago by the efforts of  three doctors and fathers of two leukemia stricken children, implemented many successful projects in a short time. Our principles, beliefs and diligence led us to open LÖSANTE- Hospital for Children with Leukemia, the School for Children with Leukemia, vocational training courses for our survivors and the mothers of leukemic children and now the Mansion for Children with leukemia.

The Mansion for Children with Leukemia has been commissioned for the first time in Turkey by LÖSEV to ameliorate unfavorable accommodation conditions of families who come to the capital city Ankara and take their first step to their severe struggle during the treatment of their leukemia stricken children.

At the Mansion everything is considered beforehand for the comfort of families. With its 40 bed capacity and 12 rooms, we have established a new and modern world.  We arranged playrooms for children, several activity rooms and workshops for the parents. At the Center, hot water and food service is provided 24 hours a day. The Mansion is in service not only for children treated at our Hospital LÖSANTE, but also to those who are treated in different hospitals. With its homelike and genial atmosphere, family members far away from home are not separate from each other any more nor do leukemic children miss their mothers or fathers during their treatment.

A healthy life is the right of every child. We, as LÖSEV, know that the treatment of childhood leukemia is possible up to 91% when social problems are solved, a sterile environment and healthy nourishment is provided.  Our aim is to increase this rate up to 100% and see little faces smile.

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Book Reviews

"Sibling Grief Healing after the Death of a Sister or Brother",  by P. Gill White, PhD.

From the back cover:

Sibling Grief is White’s validation of the emotional significance of sibling loss. She draws on clinical experience, research, and wisdom from hundreds of bereaved siblings to explain the five healing tasks specific to sibling grief.
White identifies the effects of this profound loss on daily actions and emotions and describes the dream patterns of bereaved siblings, showing how healing is reflected in the dream state. Throughout, she illustrates the long-lasting connection between siblings—a connection that death itself cannot sever. Sibling Grief is a powerful mix of information, personal reflections, and poetry—just what you need to begin your own healing journey.

Sibling Grief is available wherever fine books are sold and online at Amazon: www.amazon.com

P. Gill White, PhD.  Director, The Sibling Connection   www.siblingconnection.net  

"A Hope Lodge" and "Childhood Cancer - Rising to the -challenge"

The International Union Against Cancer (UICC), the world’s largest independent, non-profit, non-governmental association of cancer-fighting organisations, hosts a very helpful website, covering subjects from prevention to patient information. Especially helpful are the UICC publications, such as Childhood Cancer - Rising to the Challenge or the handbook Setting Up a Hope Lodge, places of hospitality halfway between hospital and home.  www.uicc.org

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Miscellaneous

Are you looking for a supplier of cost-efficient drugs?

The IDA Foundation is the world’s leading not-for-profit supplier of affordable medicines and medical supplies. Of the available range of over 3,000 quality-assured products 750 are kept in stock for immediate shipment. The foundation offers an extensive variety of indispensable products, ranging from essential medicines to diagnostic equipment. Customers of the IDA Foundation include governmental and non-governmental organisations, public healthcare organizations and wholesalers.

Phone: +31 20 4033051    Fax: +31 20 4031854    e-mail: info@idafoundation.org    www.idafoundation.org 

Cycling against cancer

Stefan Hörndler, a young German student and a cancer survivor himself, embarked on a tour around the world in August this year. He plans to be on the road for approximately two years - always on his recumbent bike. As of the end of November he is well on his way and has already reached Turkey. He will continue due East, visiting Asia, Australia, New Zealand and the American continent before heading back to Europe. Stefan Hörndler wants to raise the awareness of childhood cancer with his project and hopes to collect charitable donations for the German Childhood Cancer Foundation.

www.radfahren-gegen-krebs.de

Interesting websites

"Beyond the Cure" gives answers for life after cancer and addresses a wealth of issues that are important to childhood cancer survivors, such as insurance, healthy living, fertility and psychological issues. The site is hosted by The National Children’s Cancer Society of St. Louis, Missouri, United States and can be accessed at www.beyondthecure.org  or www.nationalchildrenscancersociety.com 

International Childhood Cancer Day on February 15, 2007

Again, there will be a photo contest “Through my eyes” with the theme: the patient at home.

Patients should be asked to take pictures from their home environment (e.g. their own room, their family house, their garden, their family …). The photos will again be sent to Christine Wandzura, who will integrate them into the next exhibition for the SIOP conference in Mumbai. More information will get to you soon via email.

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Announcements

5-7th April  2007:  ICCCPO Regional Meeting in Bali

The meeting will involve parents, patients, doctors, nurses, psycho-social staff and survivors.

It focuses on issues relevant to the Asian region.  

For more details contact Ira Soelistyo, Email: yoai2008@indosat.net.id 

29th October – 3rd November 2007:  SIOP and ICCCPO Conferences

39th Congress of the International Society of Paediatric Oncology.  Mumbai, India

Early Registration Deadline is February 15, 2006 at www.siop.nl

More details: www.siop2007.in

Local Organization Committee: bharatagarwal@iapindia.org

SIOP: secretariat@siop.nl

15-17th November 2007: 19th Asia Pacific Cancer Conference

Tehran, Iran.   If you are interested, contact: info@apcc-2007.org    www.apcc-2007.org 

June 2007:  World Oncology Camp 2007

Sponsored by the American Cancer Society (Great Lakes Division) and the YMCA of Greater Toledo, international camp activities are offered to patients (ages 12-16).

Where: Jackson, Michigan (USA)  

There are also plans for an international young adult’s camp (ages 16 –20).

If you are interested, contact:    Vicki Rakowski (Exec. Vice President) at: Vicki.Rakowski@cancer.org

FIRST ANNOUNCEMENT:  1st-6th October 2008:  SIOP and ICCCPO Conferences

40th Congress of the International Society of Paediatric Oncology.  Berlin, Germany

More details: www.siop2008.de

Local Organization Committee: siop2008l@charite.de 

SIOP: secretariat@siop.nl

SIOP Asia-2008: 

will be held in Muscaat, Sultanate of Oman

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