Parents’ Initiative: Only our doctors and we ourselves can help our children

PRAVDA.Ru guests are the Novitskys: father – Yevgeny, mother – Marina and their son Daniil. Daniil fell ill of leucaemia in autumn. Now five years have gone after the remission. Yevgeny and Marina came to Parents’ Initiative organization, which was created by ill children’s parents. And they are still members of this organization – as co-ordinators, who occupy themselves with everything connected with the Internet.

Q. How was it created, this organization?

A. Our association is voluntary, however there is nobody who enters our organization voluntarily. We are parents of children who are ill of different kinds of leucaemia and of other oncological illnesses of blood and lymphatic vessels. This is what unifies us. Every year, in Crimea 20-25 children fall ill of leucaemia, 4-5 children – of lympharganulematos , 10-12 children – of other types of lymphatic illnesses. While our child was healthy, we supposed this illness was incurable. Everybody remembers from school times the story about a Japanese girl who never managed to make 1,000 paper cranes: her doctor promised to her she would recover from the illness, if she did. Though, today leucaemia is curable. But, of curse, not always. Though, we have a real hope. Our children are being treated in haemotology section of Crimean Republican Children’s Hospital, in one of the best haemotology sections of Ukraine. It became the best one thanks to the doctors who work here, for example thanks to doctor Valentin Usachenko. In 1991, when one empire structure was ruined, while a new one did not appeared, Valentin Usachenko decided: “Enough! Too many children are being buried, who died of blood cancer, while in Europe and in the USA they are being successfully cured. Afterwards, Valentin Usachenko had a period of trainee in Germany, and German and American doctors, stars of children’s oncology and haemotology, visited Ukraine. The section started to use German protocols of polychemotherapy and achieved the same results as in European clinics: 75 percent of survival. It was clear that the state would not invest in this programme. Though the main thing was, that the programme was not suppressed (for, the number of dispensary patients increased due to that ones who had survived – therefore, the results became worse!).

Q. What difficulties does the movement have for rescuing children?

A. Different difficulties. Some things we have never thought of become reality of everyday life. We stay in the hospital together with children for 7-9 months, the whole time of the course of treatment. What earlier was a nightmare, now is the subject of our talks or even jokes. It is very important for everybody to have a correct mood for the treatment: for doctor, for parents and for child. Our children know their diagnoses and how serious they are – that is correct. Everything could happen. There were even cases, when a child stood in the hospital without children, while the parents never visited it. There were cases (which are more often), when parents divorced, because fathers did not want to lay such a burden on themselves. There were even cases, that a child in a hopeful condition managed to cover from the illness only thanks to is own perseverance, probably even thanks to its spite. Though, sometimes children who feel cheerful die in two or three days. Another kind of difficulty is relations with the state. Actually, we have the same troubles while contacting with the state as everybody who has some relations with it. An operative financial action is impossible: transferring money to an account just to buy medicine for a child causes many taxes. There are almost irresistible customs conditions for receiving humanitarian aid. For example, once, for ten months, we could not carry out customs clearance of single-shot devices for transfusion of thrombocyte mass, imported from Austria, while ill children needed transfusions.

Q. What is leuceamia? What are the reasons of this disease?

A. We learn it during the first week of our staying in the section: first of all from the book by Bernhard Kremens he wrote together with his children patients and their parents while working in Muenster University Paediatrics Clinic. The illness is connected with blood. Blood cells divide and slowly ripen in marrow before getting to blood system. Though if the cells divide too fast, there is soon too many of them. And they cannot execute their duty. There will be soon too many of them, so they will force out other, clever cells. They will spread to the whole marrow, and when they overfill it, they pass to blood, however they have learned nothing. Together with blood, they will get to all corners of the body, where they will hinder clever cells from executing their work. These mad cells are cells of leucamia. They are called unripe cells, or blasts. After they have spread over the whole body, it means that the human being is ill. The blasts do nothing bad, though they hinder normal cells. We cannot explain it in another way, because we are not doctors. Though, it is clear in general. The main trouble in fight against cancer is that everything happens too simply. Just these cells do not want to work, only eat and reproduce (like our state staff). While the deepest reason, why these cells start to reproduce is not clear yet. And it hardly will be cleared unambiguously. Though sometimes, this illness could be successfully cured: for example through ablating tumours, or through mass murder of cancer cells – through chemotherapy or irradiation, while in this case many healthy cells are being annihilated as well,- or through stimulating immune system, to make it cope with blasts on itself. Though, this last method could not be used with our children, because their immune system is ill, and unfortunately it is being ruined with chemotherapy, while ablating is also impossible.

Q. Not long ago, it was supposed that leucameia cannot be cured…

A. In fact, children’s leucaemia is the most curable kind of cancer. In developed countries, 80-85 percent of patients survive. In Crimea, these figures make 75 percent. And every year, on June 1, we have a great holiday in the section. We do not celebrate International Children’s Day, we celebrate the Day of Cured Patient. Last year, we celebrated it for the tenth time. Just think, how wonderful! There are more and more cured children who had leucaemia. It is becoming a usual thing. Apropos, last year Lena Lefanova was at the festival, the first patient who was cured according to the German programme in 1990-1991. At that time, she was 5 years old. In Soviet times, the medicine should be secretly transported through the border and hidden it in the pocket while bringing it to the hospital. Children were coming from whole Crimea, from villages and cities. Many of them have become adults now, though they are here during the holiday, together with their husbands, wives and children. Doctors are given flowers, and everybody applauds to them: such applauds cannot be heard even in pop-stars’ concerts. People applaud to the doctors who presented life to them. Children who have lived 5 years after remission are healthy. For these 5 years they lived under strict medical control and were regularly examined, and now their diagnoses are taken.

Q. If I am not mistaken, the course of treatment in Germany costs 200 thousand Marks. In Ukraine, there are not many people who could pay so much. Therefore, the illness is still incurable, though from social reasons…

A. Yes, it turns out so and it will be so, if we do nothing to reconstruct our society, to make it the most just and attentive. We know it for ourselves: only our doctors and we on ourselves can help our children. As a result: during the 11 years, no one child was sent home because of lack of money to treat it, however, there is really no money. To find money and medicine is the task of our parents’ organization. Apropos, the course of treatment for one child costs from 5 to 7 thousand dollars, depending on the diagnosis. Do you know, why? Compare salaries of our medical workers and or that ones in the West. Moreover, some medicines are supplied to the Eastern market with great rebates. About 10-15 percent of the sum are covered from the budged, though it is mainly the child’s keeping in the hospital, without programme therapy. About 30-40 percent is the aid of German haematologists. The rest is usually found by our doctors, by every family, by the parent’s organization.

Q. Does Parent’s Initiative have its site on the Internet? Does the net-contacts help to solve any problems?

A. Of course. In principle, while starting this work, we expected much from the Internet. Though, at first we even did not have computers in the section. Then, director of a Simferopol Internet-cafe called us up: he had read about us in a newspaper. He invited us in the cafe and taught us how to work, how to create a site. Now we have computers, and we have been on the net for already four years. We even did not expect that our children would have their constant Maecenas. For example, a Dutch organization, calling itself “Rescue the Russian Child!”, international mission CMS, and private persons from different countries. Though we do not dream of a millionaire who would help us, of everybody helping us with only one ruble or with one grivna. How many people live in Crimea? And in Ukraine? We want to carry out an action “1 x 1 000,000,” though for the time being we are not ready for it. But, money is not everything. Some people are ready to help us with their own hands, to do what is necessary. For example, we are very thankful to the people from different corners of our planet who translate our texts into English. Some people sent presents every year to our children. Christian students from Kiev intend to come to us on Easter to congratulate our children. Though, we should notice, that the Internet, access to information was even more important, than money.

Q. What plans does Parents’ Initiative have?

A. We have many plans. We know that we can do much. The most important thing for today is to gather a necessary sum ($ 10,000) for a very complicated operation – transplantation of marrow for 5-year-old Lesha Gustenko. We have already some money, though not enough for the operation, while there is not so much time to gather it. And what then? We want to create a volunteer group by our organization: students of Crimean American College have already offered to us their assistance. We also would like to carry out broadcast into the Internet of the 1st June festival in the hospital. We intend to organize exhibitions of our children’s drawings. One of such exhibitions should take place in May-June in Canada. We try to help ill children’s parents to find additional work which is so necessary for them. Than, problems of the rehabilitation period should be solved: not less than two years after the hospital, the children should be isolated from other children, to be taught at home. Actually, we had already had such experience: in a sanatorium in the city of Yevpatoria, we twice organized such studies for children. There is too much what should be done. That is why, we are searching for contacts and cooperation. We could share experience we have in treatment of ill children.

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