by Irina Ban, presentation held at the 2012 ICCCPO conference in London

This article is about communication of parents of children with cancer from the Balkan region, which started in very difficult and unusual circumstances.

The Balkan region is on the South-East of Europe and only three countries from the region are in the European Union: Romania, Bulgaria and Slovenia. The rest of our countries are not yet. Over 20 years ago, in the middle of the region, between East and West, was a country named Yugoslavia with the Yugoslavian nation, wich was both destroyed by the horrible civil war that lasted from 1991 to 1997 and a bit longer. Like in any wars, people are destroyed, families and friends and all of us from these countries are bereaved people as each of us has lost someone or something. At that time childhood cancer was not a priority. Our priorities were new cemeteries, refugees, missing people, destroyed cities without citizens. The war also brought us new nations, new countries, new border lines. But still, we are the people with the same history, mentality, life style and almost the same or very similar language. These positive facts are where we started from to communicate and to learn to live together again.

The communication between parents of children with cancer started very easyly, with only one email from a Bosnian parent to a Serbian parent with the simple question: Would you help and advice us to organize a parent group? And the answer was: Yes, of course! That’s how we have met for the first time in Sarajevo (Bosnia and Herzegovina) in 2002, just a few of us parents and local doctors, only a couple of years after the war. It wasn’t easy, our countries were still „enemies” but our topic was cancer in children! We were very interested about Paediatric Oncology in other countries from our region and we were looking for any parents’ group. So next year, in 2003, we met the Macedonian parents and only one mother from Croatia wich was enough for our further communication.

At that time ICCCPO didn’t have any contact with parents from our grounds and that’s the reason why I was elected for the ICCCPO Board, at the 2003 AGA in Ireland. My responsibility was cooperation and communication with parents from coutries of former East Europe. For the International Childhood Cancer Day in 2004 I sent an official invitation to the Bosnian parents and doctors to visit the Serbian parents and oncology wards in Serbian children’s hospitals. That meeting encouraged us very much and we thought it might be a time to try to organize the very first ICCCPO Regional Conference.
And we did it the next year, 2005. in Belgrade (Serbia). There were no more than 15 participants, parents from the few regional countries, three ICCCPO representatives: Gerlind Bode, Marianne Naafs Wilstra and Suzanne Cappelo, and only one local supportive doctor, Prof Dr Gordana Bunjevački. The meeting was so succsessful and we agreed to meet again in 2006  in Split (Croatia). At that time it wasn’t popular and not publically welcomed to do something on the regional level, and that’s why this meeting was titled „Croatian Childhood Cancer Parent Organizations Conference”.

In 2007, we met again in Bosnia and Herzegovina (Sarajevo). There were more parents, more local doctors and for the first time one psychologist. At that meeting we decided to organize a Regional Committee with five parents from five countries to be responsible for our further communication, conference organizations etc.

The 4th ICCCPO Regional Conference in Macedonia (Skopje) in 2009 was the first meeting that few doctors from other countries joined us parents; and our meetings became a tradition.

Our next meeting was 2010 in Ljubljana (Slovenia) and the host was the new Slovenian Parent Group. After the whole day meeting, the head of the hemato-oncology department of the Children’s Hospital in Ljubljana, dr Janez Jazbec, decided to give a small room on the ward to the Slovenian parents to be their office, as he realized how parent groups could be helpful and supportive, not only to the children and familes, but also for the hospital.

Finally, on April 28th this year (2012), Belgrade’s Parent Organization „ZVONČICA” hosted the 6th ICCCPO Regional Conference with around 90 participants from all neighboring countries; and for the first time, parents from Bulgaria came. The participants were: parents, survivors, doctors, nurses, psychologists, social workers, teachers, supported by the local government authorities and managment of the biggest hospital in Serbia „Mother&Child Health Institute of Serbia”.

After all these years we are able to conclude:

  • Yearly : 1000 children in our area get cancer and 250 die
  • We are in Europe, but far from EU standards of treatment & care
  • Different level of education in Primary Health Care
  • No one country has a National Association of Childhood Cancer Parent Organization
  • No Childhood Cancer Registry – except Slovenia
  • Clinical trials – what we know & we should know?
  • We do not all have access to the modern medicines and diagnostic procedures
  • Small market – no financial interest
  • The people are tired of the sad theme
  • Illness is a shame and cancer is taboo
  • Communication – the biggest challenge on all levels

But still:

  • Over 70% of the children survive
  • Mostly the treatment for children (up to 18) is covered by the government
  • Children are treated according to protocols
  • Almost all main physicians are SIOP members and have had training abroad
  • Specific treatment is available abroad and is covered by the National Health Insurance
  • Paediatric Oncology Departments are supported by local Parent groups
  • Thanks to the Parents Organizations and individuals, public awareness is at a higher level

And what we have done so far:

  • 1992 – 3 parent groups
  • 2012 – over 20 parent groups
  • Regional web site (under the reconstruction at the moment)
  • Regional rehabilitation camps in Croatia and Bosnia&Herzegovina
  • Regional survivors network
  • ICCD – joint activities and participation in regional TV shows
  • Regional representatives in PPAC – ENCCA project
  • Sharing & distributing:
    – “Parent House” – model of the project and knowhow
    – printed information about malignant diseases
    – translated cartoon
    – Facebook & Twitter information

Thank you ICCCPO for supporting us all these years and I would also like to thank the brave, enthusiastic individuals and small groups that have our part of the world changed for the better.

Download the presentation”ICCCPO Regional Cooperation – Childhood Cancer Parent Organisations from Former Yugoslavia” here.

Irina Ban– ZVONČICA” Childhood Cancer Parent Organization,
Mother&Child Health Institute of Serbia
(Belgrade, Serbia)