Pasha has already been treated once and he has no false hopes about his condition now. If he were older, he would repeat the folk wisdom that "you have to live."
Photo: Grigoriy Sobchenko
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You Have to Live
// Pasha Zemzyulin needs a bone marrow transplant
The boy is 12 years old. He has secondary non-lymphoblastic leukemia. He has been sock for three years and he is bored from talking about it. He needs a bone marrow transplant. His family needs that too. Heaven only knows how they find the strength for the boy's endless treatments and the endless pretending that he is getting better. So that he's bored instead of frightened.
Pasha didn't want to answer my questions. He's thin, with a sallow complexion, and small for his age. He politely paused the game he was playing on the hospital computer, politely greeted me, sat down with me and politely, though briefly, answered my questions.
“When did you get sick?”
“Three years ago.”
“Did it hurt?”
“A little, when my teeth swelled up.”
I try to talk about his school friends, but after three years, friends fade in the memory. I try to talk about the cow they have in their village in Kursk Region, but Pasha isn't interested in talking about a cow. He's not interested in anything. He is the epitome of patience. No complaints, no desire to please, no eye contact, no hope of help. In the ten years I've been writing about children with leukemia, I saw many children who died of the disease. But I have never seen a child so tired of leukemia. He came down with Hodgkin's disease first. They treated him with chemotherapy and radiation in Kursk and sent him home. Then his temperature rose and his salivary glands swelled so much that his teeth disappeared into his gums. He was taken by ambulance to the emergency room in Kursk, and from there in an ambulance to Moscow. In Moscow they made a new diagnosis, brought him into remission and now they are searching for a bone marrow donor. It's all the same to Pasha. They diagnosed cancer, so that's not scary any more. His hair fell out in handfuls, so cares bout hair any more? He got sick from the chemotherapy, so he knows it stops eventually. They cured him once already, so he has no false hope about his current remission. If he were older, he would express himself with the wisdom of the village. “You have to live.” You have to live not because you want to or like to, but because it's a sin to die by your own will. He is, in the village sense, a well-bred boy. He politely answers my needless questions. He is alive out of politeness.
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For those who are encountering the Russian Aid Fund for the first time
The Russian Aid Fund was founded in 1996 to assistant the authors of desperate letters sent to Kommersant. We verify the letters with the help of local authorities, then publish the letters in Kommersant, Domovoi magazine and on the site www.rusfond.ru. If you decide to help, you will receive the banking details of the authors of the letters, and the rest is up to you. You just help you help. This approach has been popular with our readers. More than $8.4 million has been collected. We also organize relief efforts during national catastrophes, for 53 families of the miners who died in the Zyryanovskaya Mine in Kuzbass, 57 families of the policemen who burned to death in Samara, 153 families of the victims of explosions in Moscow and Volgodonsk, 118 families of the sailors who died on the submarine Kursk, 52 families of the hostages who died in the seizure of the performance of Nord Ost, 39 families of those who died in the Moscow Metro on February 6, 2004, 100 families who suffered losses in Beslan. The Fund is the winner of the Silver Archer award.
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“May I go?”
“Go.” I pat his shoulder. It feels like touching baby chick. “And get well.”
“Okay,” he answers, without hope, or fear, or any other feeling about the possibility of dying.
I am left sitting on the bench in the hallway of the hospital with Pasha's second cousin. Her name is Katya and she is 18. She is studying in a trade school to be a baker and looks the way a village girl who is studying to be a baker should. She tells me that Pasha's mother has stayed with him all three years he has been in the hospital, but since she has two more children and has taken in another two, when Pasha is not too bad, Katya comes on weekends and vacations so his mom can go home to the other children. Katya calls Pasha's mother “mom,” although she is really her cousin. Katya lost her parents early and her cousin raised her like a daughter. Katya has a round smiling face. She smiles at me and tells me about her life, which would sound like misery without respite if I told it, but Katya either doesn't notice the suffering or accepts it as the natural order of things. She talks about how she has been spending all her free time going to Kursk to release Pasha's mother, three hours on a train in each direction. She tells about how Pasha will for an apple when he is hooked up to the IV, and when she brings him an apple, she yells at her that he said a pear. She says that, if he asks for an apple, it's better to bring an apple and pear both. She says it al with a smile, as if sitting with a deathly sick child is the most natural thing in the world for an 18-year-old girl to do.
“What about you?” I ask. “Isn't it isn't it frightening at 18 to spend your vacation in the pediatric oncology ward?”
“It's worse for his parents,” she answers. “They love Pasha more. I love him too, but less. I would give up my life for his, if it was possible. But it's not.” She's not being melodramatic, and she means exactly what she says. She would give up her life for the boy, if it were possible. But it's not. You have to live.
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571,900 rubles are needed to save Pavel Zemzyulin
Natalia Myakova, chief of the oncohematology -27 department of the Russian Clinical Pediatric Hospital, observes, “Pavlik Zemzyulin is a fine boy with a sense of dignity that doesn't fail him even in the most difficult moments.” Pasha has a secondary oncological disease following Hodgkin's disease. Consequently, the boy is in a high-risk group for which the only hope is a bone marrow transplant. None of Pasha's relatively are compatible donors, so a non-related donor has to be sought.
Pasha is now in hematological remission. He has gone through four courses of chemotherapy and has a fifth one coming up. After that, a bone marrow transplant will be scheduled. That is, if a donor is found, of course.
A donor search was started at the beginning of the month under a guarantee from the Russian Aid Fund.
When he boy entered the Russian Clinical Pediatric Hospital, Myakova recalls, he was in critical condition with a fungal infection. “We were able to treat it,” she says, “but after the transplant, when his immunity is diminished, antifungal medicine will be necessary again. Without Vfend, we cannot fight off fungus.”
The search for a donor in the European donor database (the Morsch Fund, Germany, ˆ15,000) and the purchase of Vfend (300,000 rubles) will cost 826,500 rubles. As always, our permanent partner the Capital investment group will contribute $10,000 (see for details). Thus, another 571,900 rubles are needed.
Dear friends, vacation season is in full swing, many of our regular readers will not see this issue of Kommersant and will not find out about Pasha Zemzyulin. Therefore, every ruble is especially important. Contribution in euros can be sent to the Morsch Fund in Germany, and rubles can be sent to Pasha Zemzyulin's mother's Sberbank account in Moscow. Details are available from the fund.
The Russian Aid Fund expert group
Valery Panyushkin for the Russian Aid Fund
All the Article in Russian as of July 20, 2007
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