A few words from the editors …

When the ICCCPO board met for its mid-year meeting in Heidelberg (Germany) it was decided that from now on the ICCCPO-Newsletter should be sent out only in a digital version only – thus saving us a lot of money in printing and shipping costs. We are trying this possibility here for the first time and would like to hear your reactions. You will be able to print out the pages on your own printer – and if you have access to a colour printer, the photos can be reproduced even in colour. Please keep in mind that the quality of the photos might be somewhat less than it would be for a “real” printing job. If you have difficulties at all to download a paper version from this format, please contact us and we will forward a printout to you.

As you can see on the enclosed pictures of the board in Heidelberg, it was still very winter-like, though already March on the calendar. The German Leukemia Foundation hosted the board in its Campsite which is situated in the forest of the city of Heidelberg. Thus all of them could have a look at the camp and could be introduced to the two parent groups which were also there for a weekend seminar.  Much work could be done during those days – among others the preliminary program for the coming ICCCPO/SIOP – meeting in Geneva (September 16-21, 2006). Look for updates under www.icccpo.org.

This year's ICCD was again a great success.  Many activities were organized around the world (see pictures and reports on the following pages).  Photos taken by the patients on the topic “My School” will again be part of a large exhibition at the ICCCPO/SIOP conference.

Please make sure you look at the ICCCPO Website; under “Workshop presentations 2005” you will find valuable information and handouts (as word.doc) from the ICCCPO-workshops in Vancouver on the topics:

-          Priority setting, benchmarking and evaluation

-          Volunteer management

-          Fundraising for groups in developing countries

-          Marketing and branding your organisation.

Gerlind Bode, Marianne Naafs

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ICCCPO 2006 Asia Parents' Meeting in Shanghai

ICCCPO Asia 2006 Parents Meeting was held in Shanghai, China between 6th & 7th April 2006 in conjunction with SIOP Asia 2006 Conference. There were 76 participants from 12 regions / countries attended the two days ICCCPO Asia regional meeting; with 16 from greater Shanghai area, 14 from Guangdong province (South of China), 19 from Hong Kong, and 27 from other countries.

Objectives of the regional meeting were to:

1. reinforce the mission of ICCCPO “to share information and experience in order to improve access to the best possible care for children with cancer everywhere in the world” and particularly in Asia.

2. to strengthen connections between ICCCPO Asia members, and

3. to see what ICCCPO can do for the vast country of China with no formal local or national parent groups yet.

To achieve these goals, the 2-day program included each of the participating members/groups sharing their experiences and activities, a sharing session with medical professionals, interactive sessions between all participants and also a solo interactive session by Chinese parents.

The meeting resulted in having 2 parent groups in China formed after the interactive session towards the end of meeting; with one in the Shanghai region and one in the Guangdong region. ICCCPO Hong Kong members will keep on offering support to the newly formed parent groups in China and expecting the relative SIOP members in China to offer support and co-operation too.

Also through the collaboration between SIOP Asia and ICCCPO members prior to and during the ICCCPO Asia 2006 Parents Meeting, ICCCPO forged a stronger link and better working relationship with the regional SIOP.

Furthermore, it was nice to hear during and after the meeting from members and parents who attended the meeting that they wanted further Asia regional meetings.  This showed the enthusiasm of the participants and their willingness to meet together regionally.

The successful Asia regional meeting is the collective effort of the organising committee which consists of parents and volunteers from Hong Kong working together with an/the organising team from Shanghai Children Medical Center. It is a challenge to balance the interest and enthusiasm of all participants with language barrier, as about half of the participants are not English proficient (only Chinese). The organising committee had to prepare a Chinese translation of all presentations prior to the meeting and hand it over on the spot to participants from China so they would be better able to understand the translations of the presentations in English. Also two live interpreters, volunteer students of language school in Shanghai, were there to summarise each English presentation, translating into Chinese and vice versa. This was a good lesson that we should consider dual language meetings where there is a high level of non-English speaking participants.

We would like to take this opportunity to thank the volunteers from Hong Kong, the support of Shanghai organizing team lead by Professor Wang - Chair of SIOP Asia 2006 Conference, the volunteers from Shanghai, and also the generosity of Shanghai Children Medical Center for the use the hospital conference center at no cost for the meeting on 7th April.

Benson Pau

Chair of Organising Committee

ICCCPO Asia 2006 Parents Meeting

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2nd Regional Meeting of Childhood Cancer Parent Organizations in Countries of Former Yugoslavia

The second Regional meeting of Childhood Cancer Parent Organizations was held in Split  (Republic of Croatia) on 12 of May 2006 with the participation of 27 representatives from 5 countries from ex-Yugoslavian areas: Macedonia, Bosnia & Herzegovina, Serbia & Montenegro, 8 local Croatian groups and, for the first time, 2 organizations from Slovenia. The meeting was organized by the parent organization from Split “SANUS” with generous support from ICCCPO. Mrs. Bozena Anic, president of SANUS, welcomed us warmly. 

The meeting went on in a working atmosphere, in an exceptionally good mood, and the participants shared many emotions, tears but laughter as well. Everybody got the chance to present the activities of their respective associations; to outline the latest achievements in the field and to present the difficulties they are facing with their activities. Physicians held exceptional lectures, intended for the parent audience. A great many representatives of governmental institutions pointed to notable co-operations they managed to establish with the parents from Split. The Minister of Health of the Republic of Croatia attended the meeting as well. He was also deeply moved by our joint initiative and cooperation. 

Anita Kiensberger (new ICCCPO board member) gave a presentation about the ICCD and demonstrated all possible models and examples for parent organisations.  On behalf of the ICCCPO, I introduced its history, mission, goals, benefits of being a member, and programs such as regional cooperation, twinning programs, gathering local groups and establishing an umbrella / national organisation, etc. 

Despite our very poor and difficult economical situation and the fact that money is the precondition to enable maximal treatment possibilities, we are of the opinion that there is something - even more important – which is information and education, both of patients and their parents, as well as of the whole public.

-        Despite the fact that course for clinical psychology exist at the universities, psycho-oncology is an unknown branch of psychology in all countries of former Yugoslavia. It means that both children and parents are left to themselves and Parents’ Associations are their only “window to the world”. 

-        Medical staff also face great problems since they experience “burn out” as a result of the lack of expert psychological help and support.

-        Upon a child’s re-established education, there is no cooperation with the schools. Children and their parents are left alone to manage and overcome hard situations; educators also face many problems since they do not know how to deal with a cancer sick child that attends school lessons.

-        Just a few children know the truth about their disease and survivors are isolated and are ashamed to have an open talk about their diseases.

-        Parents are ashamed and afraid of the disease.

-        Many physicians (not all) place themselves in the role of Gods, thus not inclining towards the idea to have parents as partners in the treatment.

-        There is a prevailing attitude that places the parent’s organization in the role of a service intended to serve the needs of the hospital and its medical stuff.

This is just a small part of the problems we face every day which are definitely not connected to the matter of money. Both parents and physicians, from all countries, are very interested and need twinning with other groups /hospitals.

The time passed so quickly and we all wished that we could have more time for workshops and specific discussions, not only presentations. Therefore, our next meeting will be better organised in that respect. Though Slovenia is the most prosperous country in this area, there is still no parent organization and this meeting was a good opportunity for them to realize the significance of a parents' group. They have been so impressed with our enthusiasm and realized that it is not enough to have humanitarian support institutions (or some other kind of support groups), good physicians and nice hospitals. They are well on their way to establish their first parent organization in Slovenia.

Despite of all our differences and the bad reputation of our recent history, we are still just people, parents of cancer children who have faced a lot of pain, and our experiences are almost the same. The most important fact is that we still have a similar language, mentality, legislation and therefore we are able to accept from each other different models of projects and activities.  The set of circumstances is something very important for organizing further regional meetings amongst former Yugoslav countries.

The 3rd Regional Meeting will be in Sarajevo (Bosnia & Herzegovina) in May 2007 and we would like to invite the Chair of ICCCPO, Mr. Simon Lala, and other board members to join us.

Irina Ban, Belgrade

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Successful year of the Association from Bosnia and Herzegovina

“Give love, because of our children -

Give love, because love gives life...”

"Those who save one human life save the World“. Yes, the Association "The Heart for the kids with cancer in FBiH“ from Sarajevo, Bosnia and Herzegovina has been trying, since the establishment was founded back in 2003, to find a path how to help in healing, survival and re- socialisation of our little brave fighters – children with cancer in Bosnia and Herzegovina. The year 2005 was the one most successful year of our work.

The most important information is that, finally, we have our own business premises, settled near by Sarajevo clinic (just 300 meters from it). Within the area of 50 square meters we are now able (with the help of our donors and friends) to organize different kind of activities.

We have improved cooperation and coordination with the Haemato-oncology department of the Pediatric clinic in Sarajevo and their staff- doctors and nurses through direct contacts with the Head of Department, Dr.sci.med. Edo Hasanbegovi, As the outcome of that cooperation we have published back in November 2005, the first brochure titled "Handbook for the parents of kids with leukemia“- author mentioned doctor, in 500 copies (promoted during our Annual Assembly held in Sarajevo on 19.11.2005) and we are in the process of preparing the next one - "Handbook for the parents of cancer sick children“ by the same author. The cooperation with the Pediatric clinic was shown as well during the preparation of the trip of cancer sick children to the Barretstown serious Fun camp in Ireland when, back in September 2005, doctors helped us choose the kids who will travel to Ireland back in September 2005.

During 2005 we had a very good cooperation with the EUFOR from Bosnia and Herzegovina as regards organizing the free of charge transportation of the cancer sick children from BiH to Italy for further treatment. Other sectors of cooperation were : Institute for Public health of FBiH, Institute for public health of Middle Bosnia canton and Institute for public Health in Herzegovina-Neretva Canton during "children week“ in October 2005 when we organized humanitarian concerts with music schools within 8 cities of Bosnia and Herzegovina. The outcome of that action was not only the collection of funds for our activities but an increased awareness in the public opinion as regards cancer in Bosnia and Herzegovina. As it could be seen on our WWW site: http://srcezadjecufbih.tripod.com and/or http://srtcezadjecu.ba, those concerts were very well accepted by the citizens of Bosnia and Herzegovina who helped us collect a total amount of 5,000 Euros.

In the same time we organized workshops for our survivors during the period of the Festival of volunteerism when our small survivors were making handicraft products (purses, handbags) which will be on sale during the period of marking of the International Cancer Sick Children day on February 15th of 2006. During afore mentioned week - on 07.12.2005 our group of survivors has made a small theatrical piece which was shown to the cancer sick children in Haemato-oncology Department of pediatric clinic in Sarajevo.

Our delegation visited the oncology department in Tuzla hospital back in 2005 and handed over some gifts and some medicine to the said department. On New Year's Eve we visited the Haemato-oncology Department in pediatric clinic in Sarajevo and gave as a gift 50 New Year Eve packages (thanks to our donors) to the cancer sick children. As a continuum of our actions, in December 2005 we organised two parallel actions in Bosnia and Herzegovina: one in Sarajevo at the beginning of December when we sold donuts to the visitors of Big moll (big supermarket) and by thus earning some money for our activities. The second one was in Travnik when we got a certain amount of money by selling art work by an artist from Travnik during the auction on 06.12.2005.

The Association "The Heart for the kids with cancer in FBiH“ continues to have an excellent cooperation with ICCCPO and our twinning organization Een Haerz fiir kribskrank kanner from Luxembourg and Mrs Marie Marthe Bruck Clees including contacts with other members of ICCCPO all around the World.

During 2005 we had a very good cooperation with the Associations from the Croatia (SANUS) and Serbia and Montenegro (NURDOR) and during the joint meeting back in May 2005 in Belgrade we agreed to continue preparing the organization of RAURDOR (Regional association of all similar organisations from the area) and the next meeting will be in Split (Croatia) in May 2006. 

Some of our plans for 2006 are: publishing the above mentioned second brochure; to be involved in the organization of ICCCD day in BiH on 15.02.2006; to participate within the manifestation "children week of the kids with leukemia“ which organize Association Losev from Turkey, to participate at the Annual Congress of ICCCPO in Geneva (Switzerland) in September 2006; to organize (within all Cantons of Federation of BiH) manifestations during the "children week“ in October 2006, to organize some of the seminars and workshops for the kids and parents and to establish the section of BH survivors within our Association.

Sabahudin- Sabi Had iali

President of the Association

THE HEART FOR THE KIDS WITH CANCER IN FBIH

Sarajevo, Bosnia and Herzegovina

E- mail: srcezadjecubih.@yahoo.com

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The Holiday of Life Fund in Yakutsk

In our area, childhood cancer has increased by 20 % in the last decade. The mortality rate of childhood cancer holds second place, while trauma and accidents come first. In the Yakutian republic of Russia, 206 children suffered from a malignant disease in 2004.

Oncologists have clocked up considerable achievements in treating this illness, which was believed to be incurable years ago. Now 80% of the children are likely to survive – if they receive the correct treatment in time.  Over 50% of all patients can go back to normal life – if the help was on time and well-qualified. 

In memory of their son Alesha, his parents founded the “Holiday of Life” - Charity Fund. It began working in March of 2003 and is the first and only non-government social project of this kind in our republic.

The “Holiday of Life”- Charity Fund is a noncommercial organisation. The fund means that we look for voluntary donations, allocation of money from organisations and persons who arrange and organize events.  Volunteers do this work exclusively free of charge.

“The Holiday of Life”- charity fund was founded with the purpose to help families like ’Parents to Parents”

-        Gathering of information about the disease, the treatment and its cure in supporting the families

-        Solving quality of life issues such as making conditions for treatment comfortable

-        Contacting social organizations which are engaged in childhood oncology issues

-        Setting up a family database of those who are affected by the disease

-        Organizing events such as collections for the treatment of the patients

-        Supporting the interaction for families with sick children and the medical institutions;

-        Information, moral and psychological support

-        Organizing trips for children free of charge

-        Presenting pediatric oncology issues in the mass media.

-        Making conditions for the treatment more comfortable

-        We are trying to make it easier for everybody and have painted the medical institutions in bright colors.

Maintenance of the ward

The children’s ward 5 of the Yakutian Republic Oncological Clinic was renovated in January 2004. The ward is now equipped with a refrigerator, a TV-set and a recorder. Besides curtains and bedspreads, tissue screens have been ordered. Father Mikhail (the priest of Nicola church) consecrated the ward.

Hot food for the patients

One of the most vital issues is the organization of hot food for the children and for their parents. Because of the medical institution’s requirements and restrictions this issue is relatively complicated. But, parents are allowed to cook for themselves and their children. We installed microwave ovens and an electric oven in the oncohematology department.

Organization of free transport for the patients from their homes to the clinic and back

For the immune suppressed children it is not safe to use public transport. Thus, the fund organizes free transport for kids with oncological illnesses from their homes to the clinic. A great number of the families do not have their own vehicles, nor do they have enough money to pay for a taxi. Thus, we also transport them when the child has to come back for follow-up a year after treatment

Information, moral and psychological support

When a child's ailment becomes obvious, the family faces a crisis situation. A great deal of the families have difficulty coping with the situation - what they never thought would happen has become harsh reality.  In hospital they get only medical help. Other kind of support do not exist. Under these circumstances with an extreme lack of time and enormous financial loads, the issue must be solved with the help of different departments.  In this situation help from families who have gone through the same ordeals with a sick child can be the most effective way. Constant interaction with the medical care system and social services is vital.

-        Integration of parents: The fund regularly holds informal parents' meetings with the aim to exchange experiences and to search for solutions to these problems. The major achievement is the feeling of not being alone with the illness and having an opportunity to talk to people who understand this problem outside of hospital;

-        Law consultations: helping parents with all kinds of social rights and benefits, such as financial support for disabled children;

-        Psychologists for parents - the Yakutsk State University psychological department volunteers;

-        support for teaching at home and in hospital for school aged children.

Contacts with other social organisations

We prepared a “Family social adjustment“ seminar in June 2003 in Moscow, where we contacted other parents' organisations. Children were invited to rehabilitation free of charge, which helps to improve their health and social life. We contacted ICCCPO as we felt that the international confederation is essential for us.

Arrangements

Festive matinees became a tradition in the children’s support day at New Year.  Invitation letters are sent to all patients.  The activities include a circus and theatre performance, meetings with famous people, games, summarising the genius power, handing presents to children. 

Paper cranes aims are:

-        Companionship; little patients can't visit arrangements in apartments and under the blue sky because their impaired immune system. The sole opportunity is mass media like TV, radio and publications. The advantages of such arrangements are meeting face to face, companionship, games, having an opportunity to get distracted and forgetting illness.

-        A store of positive emotions and good mood; Psychologists note that children need positive feelings as their 1st step towards recovery.

-        A long–term treatment isolates children from society. They become outsiders. Competitions and games (held on a holiday), indulging the winners make them feel confident, self-important and raise self-esteem.

-        Positive feelings for parents: parents meeting other parents with children in a similar situation can help each other. To see those who accomplished the treatment and recovered gives hope which is absolutely essential for the long way to recovery.

Children escorted by parents (26 persons) visited a Christmas performance at the national circus RS(Y) in January of 2006. This was the start of a good tradition with enormous support for the sick child.

Organizing a database about oncological diseases in childhood:  The fund asks parents who have an oncological sick child to fill in a form. These facts are useful in generating a general picture of the morbidity in the region and finding needs and problems of the families with sick children. Different forms of state, medical, legal and social support must be proved as necessary.

Plans

One of the most important aims of the fund is to create a specific rehabilitation centre – a school for the psychosocial rehabilitation of families with children suffering from oncological illnesses. The lack of rehabilitation programs for these children leads to problems.  A specific centre could find solutions for these problems.  All medical, psychological and social problems of disabled children refer to the “life quality“ notion .The specific centre for psychosocial rehabilitation of cancer patients and their relatives could help them to return into society socially active and integrated. 

This idea was presented as a project under the title “Psychosocial rehabilitation of families with children who suffered from oncological illnesses“ at the All-Russian competition “My social program.” It was considered the best program from all represented projects.

We will have to find out how we can provide employment and carrier guidance to parents and their children.

Alena & Michael Atlasov, Yakutsk

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Announcements

UICC World Cancer Congress 2006

Washington DC, USA.  8th-12th July 2006

For more information contact: secretariat2006@cancer.org   Web site: www.worldcancercongress.org

ICCCPO Parents Meeting and Annual General Assembly

Geneva, Switzerland.  16th-21st Sept 2006

The ICCCPO Annual Meeting will be held in conjunction with SIOP (International Society of pediatric Oncology) in Geneva.  Further details are on this website: go here.  

The coordinator for the parent / survivor program is Christine Wandzura. Contact her at: wandzura@kidscancercare.ab.ca

Local coordinator is Fränzi Würsch.  Contact: franzi.wursch@kinderkrebshilfe.ch 

Please look also for information on the «Info-Market» on this site.  Go here.

For SIOP-information contact: www.siop.nl

International Congress on Childhood Cancer (ICCC)

Tehran (Iran).  29th-31st Oct 2006

For more details contact: Alireza Mosavi-Jarrahi

Cancer Institute Research Center.  MAHAK Childhood Cancer Hospital

Oshon Blvd, Darabad, Tehran, I.R. of Iran

Email: Alireza.Mosvijarrahi@gmail.com  Web site: www.mahak-charity.org

ICCCPO Regional Meeting

Bali, Indonesia.  5th-7th April 2007

The meeting will involve parents, patients, doctors, nurses and psychosocial staff.

It focuses on issues relevant to the Asian region.

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

SIOP and ICCCPO meeting - 2007

Mumbai, India.  30th Oct-3rd Nov 2007

More details: www.siop2007.in

SIOP Asia-2008 

Muscat (Oman)

World Oncology Camp 2007

Jackson, Michigan (USA).  June 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).

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

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Book Reviews

Standing On His Own Two Feet.  A Diary of Dying

Sue Grant

“Although I have been immersed in these issues about 15 years, this book gripped me and moved me profoundly.  It manages to achieve sensitivity without sentimentality, and highlights the humanity and dignity of Alexander and his family, during some very undignified experiences….  This book needs to be read by everyone”.   - Myrna Whiteson. The Teenage Cancer Trust, UK

Alexander had just begun his studies at university when he was diagnosed with a rare bone cancer.  In this honest account, Alex’s mother traces the impact of the diagnosis on the whole family and outlines the issues that arose during the diagnosis, treatment, and terminal stages of her son’s illness. 

Standing On His Own Two Feet offers and insight into how healthcare systems serve the terminally ill, the choices faced by families, and the ways of providing the best possible care at home while maintaining the patient’s dignity until the end.  In particular, Sue Grant deals sesnsitively with the care needs of young adults. 

Portraying a family of admirable resilience and strength, this inspiring and moving book offers support and practical tips for anybody encountering terminal illness and presents valuable discussion points for all nursing, health and social care professionals. 

Sue Grant lives with her family in Germany, where for 16 years she was a teacher in adult education.  The cancer of her eldest son was the starting point of her writing career, and she now works as a freelance journalist.  She is a columnist with Bereavement Magazine, USA, contributing editor and book review editor for Compassion, UK, and belongs to the editorial team for the International Confederation of Childhood Cancer parent Organisations. 

June 2005.  9.25 x 6.  176 pages.  1-84310-368-0 . PB . $19.95/T

-          Empowering – offers real support, tips and comfort for those who witness terminal illness.

-          Honest – gives an unflinching account of living with terminal illness.

-          Fills a gap in the literature – deals with the particular care needs of young adults. 

From Medicine to Miracle – How My Faith Overcame Cancer

Dr. Mary Self and Rod Chaytor

London: Harper Collins Publishers, 2002.

As a teenager Mary is diagnosed with osteosarcoma in one leg. She receives chemotherapy and the leg has to be amputated.  Being a “fighter” Mary does not give up her dream of becoming a physician. She studies hard for the entry exams for medical school and gets admitted. On her first day at the university she meets Richard, who supports her in her struggle to keep up with all requirements in spite of her handicap. They stay  together and get married. And though Mary was told she would be infertile due to the chemotherapy treatment – she gives birth to two healthy children. Their - kind of - normal live is completely turned upside down again when 17 years after the first diagnosis a metastatic lesion is found in the pelvic where it cannot be removed without the risk of serious damage and consecutive loss of quality of life. Mary’s deep and sincere faith helps her through a devastating and emotionally depressing time in which she tries to prepare herself for the inevitable death, which she can and will not accept at this point: she is only 34 years old and has two little children! And - miraculously – the pain and the disease symptoms disappear and so does the spot on the CTScan.  She seems to be healed without a new treatment course.

Her truly unique story was written jointly by her and a journalist from the Daily Mirror and is a poignant testimony of the life and faith struggle of a young person with cancer.

Gerlind Bode

Sarah – A six-year-old who is unafraid of cancer

Sarah Marston

This moving story of Sarah’s treatment for brain tumor is published in a small brochure illustrated with numerous photos. It is full of courage and hope and could a good companion for the newly diagnosed. The brochure can be obtained from the National Childhood Cancer foundation, 440 E. Huntington Drive, 4th Floor, Arcadia, CA 91006 (Email: rweaver@nccf.org).

The Marston-Family has started a foundation to raise awareness and funds for pediatric cancer research. More infos: www.summitfoundation.com

Gerlind Bode

New Release

Childhood Cancer and Sickle Cell Disease - A Biopsychosocial Approach -

Ronald T. Brown (Editor)

Oxford University Press, 2006

This comprehensive handbook includes a chapter on childhood cancer: “A prospective and  Retrospective View of Pediatric hematology/Oncology” by John J. Spinetta, Guiseppe Masera an d Momcilo Jankovic

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Letter to the Editor

Thank you very much for your newsletter.

It is very fruitful and I like the article “ Necessity of Support for Young Adult Survivors”. I hope in future there will be more people to share the experiences of carry out support group and how to facilitate the long-term support among survivors or young people who suffer cancer.

Best wishes, Brenda Chan

Little Life Warrior Society

Hong Kong SAR

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