The Presence of ICCCPO in South America

Jesús MŞ González Marín

Spain

 

In the first ICCCPO General Meeting it was decided to maintain contact with the International Society of Paediatric Oncology (SIOP). One reason for this decision was that SIOP's meetings each year are attended by a large number of members of the Confederation's Executive Committee, who could use the opportunity to initiate periodic meetings with parents, especially from the host country.

This was done in Paris in September 1994; in Montevideo in October 1995, and in Vienna in October 1996.
In Montevideo the SIOP meeting coincided with the XII SLAOP meeting, which allowed the Executive Committee to accomplish three things:
ˇ a meeting with Uruguayan parents associated with the Foundation "Peluffo Gurguens"
ˇ international acknowledgement of ICCCPO by SIOP
ˇ continued meetings with SLAOP doctors and nurses.

Among other things it was agreed:
ˇ to maintain and intensify contacts with parents and professionals from South America.

This decision was very appropriate and has demonstrated its usefulness. The developing countries of South America have sufficient cultural and human power to allow them, with help, to support the founding and administration of associations for parents of children with cancer. This initiative realizes an aim of ICCCPO, which provided support by including a quantity of money for covering the expenses derived from these meetings in its 1996 budget, passed in the III General Assembly meeting in Aarhus, Denmark.

Because of our similar language and customs, I was directed by the Executive Committee to follow up the agreements produced in Montevideo with meetings with other Spanish speakers in the ICCCPO: AMANC from Mexico and the foundation "Friends of Children with Cancer" from Venezuela.

We had much contact with Dr.Clara Pérez, member of the Committee of the XIII Congress of SLAOP, which is to be celebrated in Ica, Peru. She has offered us total and unconditional help, which has been very important in achieving our aims.
Together with the Latin American Society of Paediatric Oncology and the College of Male Nurses of Peru, ICCCPO was an organizer of the following events:
- XII Congress of the Latin American Society of Paediatric Oncology (SLAOP), Ica, Peru
- Fourth Day of Paediatric Cancer Nursery of SLAOP,.Lima, Peru
- First Peruvian Day of Paediatric Cancer Nursery,.Lima, Peru
- First meeting of Peruvian parents in Lima.

In all of these events we were able to introduce ICCCPO, explain our aims, and offer cooperation in founding and developing parents' organizations in the countries of the region.

We have also taken part in the following panels planned for the Nursery Days:
ˇ "Emotional reactions of the child and his family in face of the diagnosis"
ˇ "The family as an important element in performing and tracking the treatment of children with cancer"
ˇ "Handling the child's and his family's reaction in the terminal phase of illness."

In meetings with parents we offered information about how to organize groups of parents in developing countries. In these meetings it was very helpful to have present Mrs. Josefina Amaya, social worker with AMANC (Mexico), who knew how to listen and respond to the emotions and distresses of parents who had overwhelming memories.

The parents meetings have also been very constructive in that follow-up meetings have been organized and contacts by mail have been maintained, showing us we are on the right track.
In addition, travel has been possible, financed in part by the Ministerio de Sanidad of Spain. With this benefit ICCCPO and ASPANION of Valencia, Spain, have been able to make an important effort to distribute, tax-free, the following publications, subsidized partly by the Conselleria de Sanidad of the Generalitat Valenciana:
- 300 issues of the "Reports and Communications of the First International Days of Multidisciplinary Attention to Children with Cancer" (Valencia, April 1993)
- 300 issues of "Pupils with Cancer: A Guide for Teachers" (A.E.C.C., Valencia 1996)
- 350 issues of the ICCPO information bulletin in Spanish
- 760 issues of numbers 1 to 5 of the magazines "Entre Todos" and "Dimis", published by 
ASPANION.

In total, 300 kilograms of books have been distributed which can be consulted and read as many times as necessary.

As a guest of the foundation Friends of Children with Cancer of Caracas, Venezuela, I was able to take part in a symposium about the need for and benefit of associations of parents of children with cancer. I got to know the members of the newly created Association of Parents of Venezuela, which from day to day helps to further the foundation in its home, "Mi Casita," where children and their parents can find medicines, accommodation, and human warmth.

These travels entail effort and money, but we have seen they are highly productive:
ˇ We are getting to know others as they get to know us.
ˇ We can help our colleagues in organizations for parents from Venezuela and Peru.
ˇ We can plant the seed for future organizations of parents in Chile, Colombia, Argentina, Costa Rica, etc.

The XIV Congress of SLAOP and the Fifth Days of Nursery will be celebrated (apart from SIOP) April 8-11, 1997 in Cartagena de Indias, Colombia. Perhaps the parents from Venezuela and Peru will be the ones to help their counterparts in Columbia?