Newsletter June 2007

Children's Hospice

Newsletter June 2007

Dear friends,

We are glad to meet you again on the pages of our bulletin!

In June 2007 there was an event which was extremely important for all of us: an educating course in palliative care: «Peculiarities and Development Perspectives of Pediatric Palliative Care in Russia» was carried out in St.-Petersburg. The Hospice movement only begins to develop in Russia; therefore the meeting of people working in this area had a great importance. We received a unique opportunity to ask questions of more senior and skilled colleagues, to share our experiences and to discuss some difficult cases and our common problems -- and there are quite a lot of them including ones we encounter in our hospice. It was important for us to get to know how our colleagues work in other cities. Three planned days appeared to be a too short time. We would like to talk, to work on trainings and to learn how art therapists work for a much longer time. Events of this kind are always good, because after such meetings threads of cooperation stretch out between different cities and countries. We hope that carrying out such seminars will become a good tradition serving for development of the Hospice movement in Russia and, finally, for improvement of the care for our patients.

This month our doctors started to visit ill children living in the Leningrad region regularly. Once again we had a chance to be convinced how necessary our help is for those who live far away from the city and how difficult it is for parents whose child may be the only kid in their village or small town who has such a frightful diagnosis. It is difficult for the child as well. He has less educational opportunities considering his health condition. Rehabilitation services in the region are also not well developed. Our objective is to improve the life quality of the families in need, to make education, entertainment, and mixing with contemporaries accessible to the children and to develop their abilities.

It is always sad to tell about something like that but we had losses in June.

Sasha K. died. Sasha’s illness was long and painful. Nevertheless he remained courageous and strong. It is hard for us that he is gone.

Ira R. died.

This girl spent not so much time with us, but her family became close and related to us.

Slava A. died.

He was a sociable, kind, and open-minded boy. He was the favorite of many tenants of his house. Slava’s family was one of our first cases in the region.

The death of each of them is a big loss for us. Sasha, Slava, and Ira will always remain in our memory.

One of our work directions is spiritual help. Belief in God fills a person with peace and strength, with fortitude in front of life’s terrible ordeals and with the ability to rejoice over all things given to us. A hard disease make one reflect upon his life, his soul. Many of our patients believe in God, but they don’t have any possibility to attend a service, to confess. Some people don’t even have the possibility to be baptized. We have always provided spiritual support for our patients. Priests came to the children’s home to make their communion. However, since this month our children have the possibility to attend a service in a church every Sunday.

In previous releases of our bulletin we mentioned a theater studio organized for teenagers with chronic kidney deficiency. This month they gave a performance in the Oncological Scientific Research Institute of St. Petersburg. They showed a fairy tale for the little patients of the hospital.

Maybe, performances in children's hospitals will become a good tradition of this studio.

When one is in a hospital for too long and when the treatment is tiresome and painful, such performances are a good way to distract one’s mind from the hospital routine. We hope that somebody from the children will also have a wish to take part in preparing such performances.

In the May newsletter we described the meeting of Niele К. with a prince and their romantic evening. Niele enjoyed the trip with the prince so much that she invited him to be her guest. The girl showed “prince” Alexey her house, she treated him to tea with sweets, and after that they played a couple of songs as a duet. The prince even taught Niele to play a synthesizer. So Niele won a remarkable friend. Many thanks to our assistant Alexey М. that he is able to arrange such splendid feasts for our little girls!

In this issue of our bulletin we‘d like to tell you about our social educator - Anna Kiseleva. Being a very creative person, from the very beginning of her work she took responsibility for arranging various creative activities. With great pleasure she entertains children with drawing and modeling; besides, she is our best photographer. Many of her photos get on the pages of our site. Anna finds time not only for work but also for her study. She is a very versatile and interesting personality; Anna is a reliable colleague and the favorite person of our children.

Each day, each meeting is a unique and important event in our lives. Each of our children, each family is of great importance to us. Both a plus and a minus of our work is that we have no routine. Always something happens. Sometimes some things are sad, but fortunately more things are good.

Children’s Hospice, June 2007