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Give me a life

April 12, 2007, 5:10 3708 Author: Inna Vedernikova (translated from Russian by Yulia Mirnaya for www.deti.zp.ua) "Zerkalo nedeli" Ukrainian newspaper Our chances are high, 70%. And what about the other thirty? I can’t see anything or anybody. I’m looking at my baby sleep after extensive manipulations. Temka, Artermushka, my baby, just hold on, breathe, live!..

First, one of the informational website published an ad that there’s an urgent need for blood to save a one-year old baby. Then our colleague, a journalist from Kiev, Anna Stepanova, a mother of little Artem forwarded this unbearably difficult letter to the editor’s office. And someone’s rehearsed words, gestures and methods and even unrealistic election campaigns whose main figures can’t even see the scared faces in the windows of Ukrainian public hospitals through the windows of their “Mercedes” become powerless.

"The words that ruined my world… "Diagnosis is confirmed". I’m looking at my mom: she’s crying. I can’t understand what really happened, why they took me and Artem from the hospital and rushed to Ohmatdet". What kind of a department is this where you can’t see and hear children? It came out of the blue – blood cancer. It seems that the life was over… My baby celebrated his first birthday a couple of days ago. He hasn’t been to the Zoo yet, hasn’t see the sea, hasn’t tried the ice-cream and he doesn’t know what Happy Meal is...

I can’t see anything through the tears, I can’t breathe, and it feels like a lump in my throat. "Do we have any chances to survive? I don’t want him to die here, I’ll take him home". No, no, we will go through the treatment, we’ll go through anything, just let him live!!!

Analyses, analyses, analyses. Bone marrow test – our chances are high, 70%. And what about the other thirty? Subdue, tolerate, hold tight. The fog is covering the head and everything else; it’s really dark. I can’t see anything or anybody. Having grabbed the tiny body in a death grip, I’m looking at my baby sleep after extensive manipulations. Temka, Artermushka, my baby, just hold on, breathe, live!..

At night, in the hospital room I begin napping for a while. When I open my eyes, my baby is lying with his arms stretched, he’s cold, he’s not breathing. Almost losing consciousness I’m shaking him: breathe, breathe. He’s sobbing. I’m pressing him against myself as hard as I can – I will never let him go. Our daddy is by our side, he’s napping in the chair (there’s only one bed). I understand that he also feels pain and despair, but I can’t think about it right now. The night had passed. The first and the most horrifying night of our new life.

The first shock had passed… Leukemia is not a sentence; it’s just the diagnosis. We have to learn to live our lives with it. Long struggle for my son’s life is ahead of us. But I know for sure that my child will be healthy. I believe in it. I’m just asking God to give me strength to go through this and survive.

I understand how bad all relatives feel now, everyone surrounding me – my husband, mom, dad. For me it’s the hardest time. Every day I see how my baby, my sweet little pumpkin, has to go through these analysis, injections, medications. And anesthesia! When already falling asleep he tries to grab me with his little weakening fingers - "mommy". I see that he’s scared and feels pain. I can’t help him, I can’t!!! I have to be strong. "Everything is OK, darling". I’m smiling. "Fall asleep, I’ll stay by your side. I’ll always stay by your side". "Mother, you’ve got to leave, we’re ready to start". I take my hand with effort and rush out of manipulation room, the tears are rolling down my cheeks: forgive me, forgive me, honey. They can’t let me stay there with you. But I’m here, behind the door, I’ll be here. When you wake up, we’ll be together again. I’ll be smiling and telling you that everything is OK. My God, these smiles and words do not come easy to me! But for you, my dear, my only baby, I’m ready to do anything!

You wake up and cry. You feel pain. And once again I can’t do anything. I’m crying because of my weakness. You look at me and you look scared: if mommy is crying than something is wrong. No, dear, I love you. I smile. Everything will be OK.

Bleeding. For an hour, two, ten… I’m looking at my doctor and understand that’s everything is really bad. They take you to another building, to the reanimation center. Of course, they don’t let me in. I’m sitting by the door, I’m not crying, I’m trying to listen. I hear you cry, I know you’re scared, you feel pain, and you can’t even understand where’s your mommy. I’m here, honey, I’m with you. We are strong, we’ll survive. Just hold on!..

I can’t hear or see anything or anybody. I focused on my baby, the life is passing by. Only a hospital room and my son struggling for his life exist in my world. If I could I would give him everything I can – strength, energy, blood…

We’re looking for donors. We don’t need direct transfusion. But they regularly especially for the first time give us platelet concentrate (for fibrillation) and E.R. mass (for support of hemoglobin level). These preparations are obtained from the donor blood. My baby’s blood type is rare, it’s B-. However, Rhesus factor is not that important for platelet concentrate, but blood sampling for E.R. mass requires complete concordance. Our dad’s blood is suitable only for platelet concentrate, I can’t give him anything, my blood type does not fit. I call my friends, someone (I don’t even know who) gives an ad on some website. People start calling.

To tell the truth I didn’t even expect that so many strangers would rush to help my kid. I don’t know how to thank them. I ask the Lord for health for them and their close ones. From the very beginning I was told that finding donors is the biggest problem. Moms with kids who came to get treatment here from other regions have to use paid donors. Officially donors are paid 20-30 hryvnas, moms have to settle for 100 hryvnas with such donors. People who called me and came to give blood for my son didn’t event want to hear about money. As one of the donors told me: "Thank you, I’m glad you turned to me and now I can save at least one little life". Thank you all for the life of my baby, thank you that in spite of all economical, political and other problems in our country you remained Human.

It’s true that a friend in need is a friend indeed. And I’m glad that there are no indifferent people among my friends. Thank you all for you support. Any support – moral one or material or physical. Of course, not everyone rushed in to help me. I’m not blaming them, I’m not offended, I’m not angry at them – each of us chooses its road in life. But there are people who I didn’t even think were close friends, but who did everything they could for me. Thanks to all of you I hold on and struggle, you support me and help me not to go crazy in this hell.

Your perception undergoes major changes in this hospital. Gloomy faces in the subway, arguing old ladies will never annoy me again, I will never cry from problems at work, I will never be fighting with my husband breaking dishes and going into hysteric, I will never be upset because bad marks of my son at school. It’s all too mangy comparing to the fine line of life and death where our kids balance living in this hospital. I understand that I do not have any right to be depressed and despaired because my baby feels pain and does not feel good here. All kids have to go through this. In order to understand how strong a man can be you must look at their eyes, at least once. Then you will see that in spite of the hardest treatment called “chemotherapy” they remain kids – cheerful, naughty and joyful.

There are no strange kids in this hospital. Every success in the treatment of each baby you take as your own one, every failure shatters everyone. All moms became good friends. And I understand that this friendship is a real one. And we get along not only because there’s no one else around but also because we all became one family.

And each of us became closer to God. We can’t help our children, all we can do is just pray for them and for doctors that try to save them. I wasn’t a big follower of religious rituals. Yes, I would occasionally visit church, I wasn’t fasting, I didn’t know any prayers. But when I stand by the surgery room, not knowing what’s going on with my baby, all I could do is just ask the God to be with my child. And then I understand that He is there. And He is with me. That we are not alone, and everything will be just fine. And I thank God that my son is alive and he is with me; for giving us this test so we could understand the real value of life – a life itself.

Living conditions here are ok. Maybe because of the type of the disease that gets treated here. All hospital rooms are single: immune system of children that do chemo is very weak, they can catch any disease. There are restrooms and showers for moms. Everything is very clean and nice. The food is fine, there’s not too much variety, but it doesn’t matter, food is the last thing you think about here, sometimes you don’t even notice what’s in your plate. Medical staff is pleasant, they care about kids, try to understand moms. My baby loves his doctor. When she comes in he always smiles and prattles something in his own language.

* * *

So, it’s been half a year since we got here. Even thinking of it is scary. But the thought that my son out of his one and a half years of life spent this half a year in the hospital and didn’t see anything but the walls is even scarier. I try as much as I can to smooth over his life here – I put posters on the wall, I brought toys and books. But he, as any other boy, would rather prefer picking a screwdriver in the TV set, what he does anyway. Every day, especially when he is not doing chemo, my baby is gaining strength. I can hardly manage him, because his locked-in energy is breaking outside.

And only two or three months are left for us here, but this is the hardest time. Accumulated tiredness, nerves are at the breaking point. It seems, that we won’t have any strength to make this final breakthrough.

And then? Chemo, one and half years of supporting chemo once a month and a constant fear: what if it happens again. Doctors say that if there are no relapses during five years a kid is considered healthy. But in fact the disease may come in any age. But how can you live your whole life on a powder-barrel? When you will have to fear for your child and have no peace for the whole life... Any cold, and I don’t even mention more serious diseases which almost all kids pick up, can provoke a new wind of our disease…

For those who want and can help:

Contact phones:

8-050-508-58-93; 599-65-14 – Anna Stepanova, little Artem’s mother

From the editor

Valerii Ivasyuk, Public Health Deputy Minister, having called altruism “a feature that appears only in satisfied people”, announced that renewal of informational campaign for donors in Ukraine is the absolutely useless thing. At the same time, a pessimistic official, taking into consideration extensive number of situations described in the letter pointed out the Red Cross which “is able to arrange something similar to propaganda of usefulness of donors”. The Red Cross in its own turn is sure in spite of all trouble that has to do with economical and spiritual self-determination of the nation (including Ukrainian media’s refusal to broadcast and publish social advertising), this campaign is in process in Ukraine. Apparently, the decrease of numbers of donors in Ukraine from 24 to 12 people for every 1000 of population (in the US it’s 150 people) can be considered one of its outstanding results.

Let me remind you that the system of blood service founded on the basis of Soviet propaganda of donors collapsed in 1991 together with Soviet Union. There is no doubt that its extensive part together with tons of blood poured down the drain can be criticized, however you can’t blame it for not providing our country with its highly needed medical product. The problem of quality and quantity of donor blood sharply stood out in Ukraine with the beginning of AIDS epidemics in 1994. Most of us remember that state leaders began talking about single standards of the quality of transfused blood and its components. Then, in 1995, a question of construction of plant that processes plasma emerged, it would allow to prepare blood preparations in compliance with international standards. All these issues are reflected in the laws, documents and presidents decrees.

Fourteen years have passed since then, but… citizens of independent Ukraine still look for blood for their close ones with the help of informational websites and ads on posts and columns on the streets; hemotransfusion stations continue to “distil blood” at the level of home-brew devices, and officials continue to announce their initiatives regarding creation of a single national service. Even after Sknyliv tragedy nothing was done, when the country faced the fact of absence of strategic supplies of blood in Ukraine. According to World Health Organization standards, 15 ml of donor blood should be stocked up for every citizen, in Ukraine it’s just 8 ml. "This way, out doctors save people injured in accidents and crashes. However, they can’t help so-called planned patients who wait for set surgeries and procedures. How many of them die – only God knows. Nobody keeps track of this statistics in Ukraine", - told us Larisa Vahnenko, the Chief Doctor of Blood Transfusion Center in Trauma and Surgery Institute of A. Shalimova.

Industry specialists claim that dozens of projects of foundation of national blood service with a single coordinating center and unified quality standards and the state register of donors accumulated in the drawers of constantly changing Department officials during these years. There’s only one thing missing for their implementation – political will.

"A short memo about increase of reward for so-called regular donors has been wandering along parliament halls for three years now. Out of the total number of Ukrainian donors it’s just nine percent. It’s our nation’s genofond", - says Anatolii Chugriev, the president of Ukrainian association of donors. At the same time a project is being discussed in the department, according to which this category of people can be provided with lifetime free medical treatment and food grants. But Valerii Ivasyuk, the author of the document, is not sure that the deputies will come down with the money for such global expenses for donors, they can’t even decide to give 140 hryvnas to each donor instead of 30. Apparently, now both projects will be wandering the parliament halls. Maybe there will be a third one – when the new minister will be appointed, because it’s not even clear yet what practice Ukraine is going to adopt: free of charge mass donors or paying donors. By the way, both forms exist in the world practice. However, it’s not appropriate to pay for blood in EU countries.

For the sake of justice we can make a note that the new government could do a series of announcements about its reformative intentions in this connection. Medicine was represented, as almost the top priority of the internal policy of the country in the president program of Viktor Yuschenko made public to Verkhovna Rada. If you consider the fact in the whole world it’s based on the timely and stable donor system, than the leader of the country should keep an eye on the problems related to it. Deputy Minister’s attitude to this issue in the part of necessity of elimination of different standards of medical help in Ukraine when some people have access to all benefits (including donor blood) and the others to none could be considered competent. President’s decree issued in January about the measures of increase of effectiveness of struggle with dangerous diseases where he mentions about the immediate need to construct the plant processing blood in Ukraine definitely reassured everyone. However, two months marked out by the president have passed. Then why Mr. Ivasyuk speculating about the launch of the first plant line in one (!) year cannot even answer the top priority question which country will be partner of Ukraine in this construction to ensure the plant’s profitability – Poland as planned in 1995 or another one? Because he’s been in deputy minister’s chair only for two weeks or maybe because the country cannot provide other guarantees of president’s decrees other than official’s promises? In this relation, we want to ask not only a department official but also everyone: do we realize that this civil and professional cruelty takes away the last chance for safety from little Artem and from thousands real people than need help right now?

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