This article was prepared for the ICCCPO/SIOP-meeting in Porto but not presented

Our situation

Our organization works in a region of the Ukraine, which has the status of an autonomous republic. We live in the Crimea peninsula which is a unique geographic and natural region. After the collapse of the Soviet Union, the government of the Ukraine started to return the state to a capitalistic way of life and production. But the matter is that the psychology of the people, which are not used to be masters of their own lives, cannot be changed as fast as it is necessary. The citizens of the Ukraine should have free medical service (as it was in the Soviet Union), but the truth of daily life reveals that in a situation of general crisis the state has no possibility to carry out this obligation. It means that the state can provide only 30 percent of the full price for the treatment of a child with an oncological disease, namely: a free bed in the hospital for the child and his/her mother, free medical examination and the main part of medical manipulations. The state also provides free teachers in the pediatric departments of hospitals. But all the rest: medications, all food necessary for adequate nutrition (for the children and the parents in the hospitals) and complex medical manipulations and tests - these expenditures are paid by the parents. 
The treatment of one child depending on the kind of the oncological disease can equal to five or ten thousand dollars, and this sum is to be paid by the parents. Sure, according to European and American standards, this is not a fortune. But for the parents in the Ukraine sometimes this sum is almost astronomic. An average monthly salary/payment in the Ukraine equals 40-100 US$. Sixty percent of the children admitted to onco/hematological the department of the Crimea Republican Children Hospital are children from families with such income. And there are also children from families with worse financial status as well as orphans. Unfortunately, it often happens that as result of oncological diagnosis of the child the family falls apart. Often the father leaves the family, thus the income of that family is reduced by one half. 
Such situation has only one way out - charity. But 80 years of communist regime destroyed the traditions of charity, which were strong in the Russian empire. Due to the general crisis in the country the development of new charity traditions is very slow and is connected with many difficulties. The state gives no help to potential charity movements, providing no tax remissions for the enterprises that show charitable activity.
Now different kinds of public organizations develop and public activities of the citizens are growing very fast in Ukraine (NGO). This progress became possible due to support of European and American organizations, which organized the training of Ukrainian citizens in the field of public organizations and foundations. But our country has no experience in this respect, such as the foundation of an organizations by parents of sick children. Unlike any other public, religious and educational programs this side of public activities is never covered by the foreign training projects. Maybe it is possible for ICCCPO to organize seminars of that kind in states of the former Soviet Union. 
Due to extreme costs, the internet can only be used by very few people. However the internet is a very important tool in communicating medical information. 

Cancer - still a taboo

A taboo on the diagnosis cancer existed in the Soviet Union for many years. It was prohibited to tell this diagnosis to the patient. Citizens of post USSR countries have not only the stereotype idea: "cancer means death", but also are not willing to accept any information about the disease. The collapse of the Soviet system of health service and prophylactics of different diseases as well lead to the fact that oncological and other diseases are diagnosed too late. Such situation is twice dangerous in the Ukraine, home of Chernobyl. The main part of the population of the country knows absolutely nothing about the curability of cancer. I can tell you this with all my experience because five years ago my family and I belonged to this part. 
The lack of such information gives the ground for different charlatan healers to appear. During the first month when the diagnosis "cancer" is approved, the parents of the sick child are literally attacked by the crowds of different charlatans and representatives of net marketing groups, selling shady "heal-everything" new medicines and bio-additives. Parents, which are frightened to death by the diagnosis and full of doubt to state health services, often let the first charlatan healer persuade them to give up conventional chemo-therapy. Unfortunately neither our doctors nor we know any of the cases when healers cured the sick child.
One of the problems of pediatric oncology in the Ukraine is the absence of possibilities to do bone marrow transfusions. Great work is done in this field, we have talented specialists, but we need time for their full training and qualification and for organizing our own donor bank. Unfortunately, time is the thing that our sick children never have. That's why contacts with parents and other public organizations abroad are so important for us. In 1998 due to the support and great work of Dominican monks from the Catholic Church in Yalta and parents from an Italian parents organization (we got their address from the ICCCPO-Newsletter) we had the opportunity to send a 5-year old boy to Italy to undergo the bone marrow transfusion. The operation was paid by the Vatican. The transplantation was successful, but the boy's organism was too weak and he didn't survive hepatitis.

Rehabilitation

Many problems are connected to the almost non-existing system of rehabilitation. First of all, there is no psychological support during the treatment and afterwards. In the Soviet Union the help of psychoanalyst and psychologist was not considered as vital and important. Moreover, it was treated as something shameful. Soviet people were not allowed to have psychological problems. That's why now in the Ukraine we have only a few psychologists, which can provide real support to the sick children. In the oncology department, where psychological support is a question of vital necessity for children, their parents and doctors as well, the situation must be changed as soon as possible. 
It is necessary to persuade the poor state that it is important not only to cure the sick child but also to give him/her the opportunity of rehabilitation, to reconstruct the health, to become a real member of the community and to be realized as a person. 
In the same line we see the chance to give school education to children with leukemia. These children cannot visit the school until the treatment is finished. The Ukrainian Law provides the opportunity of home education, and the child is supposed to be taught by the teachers from the school he/she visited before the treatment. But unfortunately, the Ukrainian education system has a lot of other serious problems, that's why home-educated disabled children are usually left alone with their problems.
We are very lucky that we don't have any problems with the doctors. Here, in Crimea we have a very qualified group of pediatric oncohematologists. Ten years ago on their initiative a leukemia group was founded in Ukraine, it is supervised by professors from Germany. These selfless people do all their best for each child in the hematological department. The problem is in the following: the whole department staff, forty five specialists get a monthly salary (TOGETHER!!!) which equals the salary of one nurse in Germany. The doctor, the specialist of European qualification, working in the state clinics, is paid by the state forty dollars a month.
Almost all our Ukrainian health service is infected with corruption, and if you want to be cured, you have to pay private and make expensive presents. But we never meet the backside of our state health service. The specialists of our department realize their duty in the highest sense of the word. But they have their own families; they have to take care about the future of their children. We are afraid that they can change not only their occupation but their country as well, as it has already happened. Last year we lost one of our best doctors who moved to the USA.

Organizing a parent group

In 1991, on the initiative of the head of the hematological department of the Crimean Republican Children's Hospital, Valentin Usachenko, the organization for parents of children with oncohematological diseases was founded. Valentin Usachenko is a specialist of highest qualification, great doctor and a great person. Usachenko trained in Germany and witnessed the work of the Parents Initiative there. In 1992 the organization of the same kind was founded in Simferopol and worked successfully for several years. The first years were difficult in the beginning of Ukrainian independence, times of chaos. But the organization made great progress. It got the medications for therapeutic protocols, got the permission (on the state level!) for one of the parents to stay with the child during treatment, gave support not only for small patients, but medical staff as well.
In 1998 a group of parents founded the "Mercy Mission Overcoming" with Dr. Usachenko as supervisor. We coordinate with him almost all activities of the mission, because he usually knows better what is really necessary for our children and how to organize the work to fit with the daily schedule of the department and the hospital.
The main part of the mission's time and efforts is spent on the search for money to buy medication, medical tools and equipment. Our children are very lucky - our German supervisors send the necessary medications for leukemia therapy to the department. The Simferopol department received this help from German doctors for over 11 year. And we are tremendously grateful to these people, who take care of the health of our children better then the state, to which they belong. But leukemia is not the only pathology. There are chemotherapy complications and obtained hepatitis. All medications are very expensive. Our main task is to provide all children with them.
We decided to do one thing, that became both a part of psychological rehabilitation of children and a way of gaining money at the same time. Our children staying at the hospital are making handicrafts with the help of teacher. They draw pictures, make embroidery and applications, do origami. The results of their work do not stay in the shelves of parents and relatives. We exhibit them on different occasions and sell them. Certainly, comparing with the total sum needed for the treatment, the money gained from these sales is very small. Part of it is spent for providing our art students with paper, pencils, paint and so on. But the rest is enough for purchasing a monthly supply of some necessary and not expensive medications or solutions for the whole department, or to provide one child with the expensive antibiotics. And the children are really proud - they take a part of the financial burden from the shoulders of their parents!

Contact to ICCCPO

It is very difficult to explain how important it is for us to be part of the of federation of parents organizations. It can be compared with the condition of parents in the first days when they knew the diagnosis of their child, when they realize that they are not alone, that parents of other children support them and that their child has a good chance to be cured.
During three years of our work we tried to make our website most informative both in reflecting the state of affairs in our oncohematological department and on parents organization. Now our site is well known in the Russian speaking Internet. 
We also cooperate with local mass media. They regularly and free of cost inform the community about our needs, place the requests of the parents about needed help, tell the community about our actions. We'd like to make a regular publications of popular articles about cancer and possibilities and ways of its treatment, but the above mentioned taboo is still alive in the consciousness of people; and editors of our newspapers are just people.
The most grateful field in our work is the organization of festivities for children. Such holidays are the main rehabilitation actions by now. We try to make various programs, involve actors, circus groups, and puppet theatre, sometimes even make a kind of performance by powers of parents, staying in the department with their children. Certainly, all of children are given presents - it's a must! And we are greatly thankful for the families from Great Britain, who sent our children Christmas gifts for the second year running. 

Parent involvement

It may seem strange, but the main problem of the mission is how to involve more parents. Just 1-3% of the parents show interest in the activities of the initiative. The main part of them can be organized for one single event or help. But usually when the child has finished the treatment and is out of the department, the taboo works, and parents try to forget everything that was connected with the hospital, cross out all dreadful months and years off their lives. It is easier to find help and support from people who are not connected with the hospital: providers, designers, translators, journalists, artists, actors - you name it.

Future goals

We need a centralized search for medications. We need a well working internet platform. We need volunteers to work in the department. We need to train them, introducing them to the specific aspects of this work and to stand the emotional stress. We need psychosocial support for children, parents and the staff. 
We have the opportunity to organize a library with special scientific, popular and fiction books that can help in psychological support for children and parents. But our department has no special room and space for it. We need another room in which parents (usually mothers) can stay during the treatment of their child, where they can do handicrafts and other things.
We need a good schooling system for our patients and hope to get support from donors. We got already 2 computers for the department with Internet. The provider allowed us all-day long assess to the world web. Microsoft department in Moscow provided us with Windows and Office programs for he specific educational program free of charge. We bought a series of educational programs as well. Now we need 2-3 more computers more and 2 volunteers to assist the children and to coordinate the education process. 
Of course, our problems are very familiar to most of people in the ICCCPO community. One or the other way you have solved them or are just now solving. We will be happy to accept your help, and will be twice as happy if our experience will help you. We are very glad to be part of this community. 

Marina Novitskaja 
Coordinator of Mercy mission "Overcoming.  Crimea, Ukraine