The First Ukrainian Meeting of Association of Organizations and Groups Helping Children with Oncological Diseases took place in Kiev on October 2-4. It was organized on the initiative of the My Poruch (We are Near) volunteer group from Kiev and the Overcoming Mission, a parent organization from Simferopol.

It was the first meeting of people from various regions who work with kids suffering from leukemia and other kinds of cancer. The participants of the meeting were members of both volunteer groups and parent associations. The specific feature of the Ukrainian situation is that parent organizations were the first to appear here, in Kiev and Simferopol, in the very beginning of the 1990s. This happened simultaneously with the beginning of the use of German antileukemic treatment protocols (BFM).

Much has changed since then. New organizations have replaced the old ones. Two Ukrainian parent societies, the Overcoming Mission from Simferopol and Viden from Konotop, are now members of the ICCCPO (International Confederation of Childhood Cancer Parent Organizations).

Representatives of five Ukrainian regions (Kiev, Kherson, Crimea, Konotop, Lugansk) and volunteers from Minsk took part in the meeting.

The necessity of the meeting was evident for all its participants. The time has come both to discuss existing problems, which are common for most societies, and to share the experience, to find the ways of cooperation in problems that one organization cannot solve alone. The participants understood that the result of the meeting will be children's lives saved.

It is significant that the Konotop association was represented by Sergey Kharchenko, whose 11-year-old daughter Anya had marrow transplantation, which is a very complicated and expensive operation, in September 2004. The whip-round for this operation (which took place abroad, in Belarus) amounted to 60,000 USD; actually, it was one of the first common actions that united the efforts of various Ukrainian groups.

Which organizations are more efficient, parent or volunteer ones? Both have their advantages and drawbacks. The strength of parent organizations lies in the fact that their members help their own children. As one of the participants said, "Every parent understands that it's impossible to cure the kid all alone. Some become passive, but for others it's the incentive to be active." The formation of Parent Organizations is impeded by geographical obstacles: children who receive treatment in regional hospitals live in different towns or villages, and their families, living far from each other, have problems in arranging joint work. However, once formed, the backbone of the group keeps the organization active.

Now the Lugansk Parent Association is just being organized. This process, which had started in the region, went on during the meeting in front of the participants' eyes. This in itself was a very valuable experience for all the participants.

Of course, given only two days (October 2 and 3), it was impossible to discuss all the multitude of problems encountered in helping children with cancer. The discussion was grouped into six main topics: organization and functioning of volunteer and parent groups; legal and medical activities; organizational Issues of cooperation between different organizations and groups; volunteer-parent-doctor cooperation; fundraising; organization of the children's spare time and actions of social importance.

As a result, the participants not only learned much from each other and from social workers invited for consultations, but also came to joint decisions, which formed the basis of the Declaration of Intent.

Now the participants of the meeting will continuously keep in touch and coordinate their actions via the Hematolog information network. The technical side of its creation is simple, and it had been implemented by the beginning of the meeting. Now the aforementioned six regions will share hot news every day via the Internet, hold mobile virtual debates on all emerging problems, discuss the points where their activities may coincide.

Kids under chemotherapy regularly need blood and blood component transfusions. During the treatment of oncological diseases, the immunity is sharply reduced, and the danger of infections (including hepatitis) becomes very serious. This is why the participants decided to respond to the long-time need of creating a donor database covering different regions. Volunteers who want to donate their blood (to a child with the corresponding blood group) for free in case of necessity will be put on the list. The principles of donor selection and invitation, donor-patient feedback and precautions against donors with contraindications were also discussed. At first such a database will be created in Kiev; later this experience will be exported to other regions.

The participants outlined several practical steps for establishing contacts with foreign clinics with the aim of sending Ukrainian children there for operations (mainly marrow transplantations).

A heated discussion concerned the problem of relations with the official health and social protection bodies. Should one integrate one's actions with their work, or one should never rely on "kind bureaucrats" but always and only on oneself? No final answer to this question was given. Probably these two approaches should be combined in the work of each group in a realistic way.

The participants of the meeting also considered and formulated the principles of relations with doctors-in-charge and thoroughly discussed the problem of appropriate cooperation between work groups (both parent and volunteer ones) and the parents of children who need help in their treatment.

Accumulation and publication of information on "survivors" (according to the international terminology, these are children who have been successfully cured of oncological diseases) was considered extremely important. The child survival rate in Ukrainian hospitals using contemporary treatment programs reaches 75%.

The participants of the meeting specially agreed on constant and close cooperation, both informational and direct, in holding charity actions. In particular, it was decided to celebrate the next International Childhood Cancer Day (February 15) as an all-Ukrainian date.

That is why the last working day of the meeting, October 4, concerned practical actions aimed at receiving help for the gravely ill children. The participants of the meeting arranged relations with the press and working contacts with various organizations and companies. An attempt was made to propose cooperation to the headquarters of the Ukrainian presidential contenders, but it was not successful.

The main result of the meeting was the creation of the Ukrainian Open Association of Organizations, Groups, and Persons Helping Childen with Oncological Diseases. The My Poruch group from Kiev took the responsibility for the formation of an initiative group that will work on the official registration of the Association.

... During the meeting, along with various printed materials, we saw a poster in English. It bore the inscription CANCER in black. But the second syllable of this frightening word was crossed out in red, and a large letter I in a childish handwriting was seen in front of it. Now the inscription became quite different: I CAN (overcome the disease).

The first meeting of the Association indeed showed that indeed WE CAN do much and will be able to do even more together. We need each other, and our children, who suffer from a terrible but already curable disease, also need us. They expect our help in order to stay alive. And this help must reach them. It may not fail.