Sasha saw an airplane out the window with wings like wreathes of fire. Aplastic anemia patients, especially those with fungus infections, spend a lot of time in a state between waking and sleeping, when a little boy might see an airplane like that.
Photo: Ñåðãåé Áðîâêî
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It's Not Too Late
// Sasha Kharitonov can be cured of aplastic anemia
He is a ten-year-old boy and he has aplastic anemia – his bone marrow is not making blood cells. Sasha is in the same ward of the Russian Children's Clinical Hospital, with the same diagnosis and it seems in the same room as a little girl we weren't able to save three years ago and cant' forget. Sasha is also not responding to the usual chemotherapy, like the girl. But the girl couldn't have a bone marrow transplant, while Sasha can.
He's a funny little village boy with a round head and blond hair. He has a funny way of talking and rather funny ideas in his head. He sits on his bed with a catheter in his clavicular vein attached to a drip bottle and is learning to play the guitar. A machine, called an infusion pump measures and releases four antibiotics and a painkiller into Sasha's bloodstream. Sasha's breathing is noisy and painful because he has a fungus in his lungs. It's the same fungus that grows on stone walls and that infests the lungs of children with leukemia and kills them.
“How are you, Sasha,” asks his lady doctor.
“Better,” Sasha says, grimacing from pain. “You can stop the painkillers. I'll tell you, if I need them.”
Six months ago, at the beginning of his sickness, Sasha was in Orel Hospital, with four people to a room and his mother wasn't allowed to stay with him. He had bone marrow aspiration, a large needle inserted into his chest without anesthetic, and painkillers administered by injection, not infusion pump. The boy has forgotten that he is receiving painkillers continually and, without them, it would be unbearable. It seems to him that he is getting better.
He says he doesn't like Moscow. People breathe in smoke in Moscow, and you can't see the stars at night.
“I would rather go to the village.”
“Why?”
“To play in the mud,” the boy says smiling. “You know what kind of mud we have? And the nights are really dark. With stars. There's a whole forest at granny's house, because gramps doesn't want to cut any trees down.”
It hurts when the boy laughs. So he prefers not to tell funny stories like “gramps doesn't want to cut any trees down.” Rather, he likes scary stories and magical stories. He says that, every time he walks through the forest to see his grandmother in that real village darkness, he feels as though something is watching him from in the trees. But his grandmother has the evil eye, Sasha says. For instance, if she finds out that he is doing better and is happy because he will be coming home soon, he will immediately get worse again.
“Then I'd have eight antibiotics and not four,” he says.
Sasha says there's nothing magical in Moscow. Only once in the six months Sasha has been in the hospital in Moscow has he seen the magic airplane that flies just over the roofs of the buildings. Its wings, Sasha says, its wings had fire on them like wreathes. Maybe Sasha saw the airplane in a hallucination. An aplastic anemia patient, especially one with a fungus infection, spends a lot of time in a semi-dream state, when he may see a plane with wings of flame.
I spoke with Sasha's doctor half an hour earlier. She said that the cause of aplastic anemia is unknown. A person's immune system suddenly begins to suppress the bone marrow, and it stops producing blood. Treatment consists of chemotherapy to suppress the immune system for a lengthy period and waiting for the bone marrow to function again. Sometimes it does. Sometimes it doesn't.
“Do you remember Nadya?” the doctor asks. “She had aplastic anemia too. And she didn't respond to treatment, either. Just like Sasha. But three years ago, we didn't know how to transplant unrelated bone marrow to aplastic anemics. Now we do. Methods for typing bone marrow have been significantly improved. We've had five aplastic anemics undergo transplantation and live already.”
I remember Nadya. I wrote about her three years ago. We collected money for more and more complex treatment for her, found donors, stood in line to give blood for her. When she died, I dreamed about her every night for three months. I don't know why. Maybe because she was a very good girl.
In my memory, the girl's story is shrouded in failure. I don't remember exactly what room she was in, but I think it's the one Sasha is in now. It seems to me that I sat across from her and watched her play with her dolls in the same chair I watch Sasha playing the guitar in.
“Do you now what a bone marrow transplant is?” I ask.
“Don't tell me,” Sasha says. He doesn't want to be sacred.
“Don't be afraid. It's just a shot in the vein. The donor marrow looks like thick red blood. You just inject it into the vein and wait for it to be absorbed.
“Great,” the boy says. “If I'd known that from the beginning, I'd have come for 15 minutes, gotten the shot and got better.”
I don't tell him how hard a bone marrow transplant is on children, or what the chances of survival are.
723,700 rubles are needed to save Sasha Kharitonov
“Sasha has and especially virulent form of acquired aplastic anemia of unknown origin,” Mikhail Maschan, head of the hematology department at the Russian Children's Clinical Hospital states.
It is not a malignancy, but the result is the same: aplastic anemia is fatal. Unfortunately, Sasha has not responded to medicinal therapy. Treatment with antithymocyte globulin “produced no hematological result,” Machan explained. The only thing that can save him is a transplant of healthy bone marrow. Maschan says that good results have been attained in the world with such transplants. At the Russian Children's Clinical Hospital, they have already treated five aplastic anemics “and the treatment was successful for all of them. So we are optimistic.”
The transplant procedure is free for Russian citizens. But the expenses for searching for a donor, harvesting the bone marrow, delivering it and purifying it are not. That will cost ˆ15,000. Donors for Russian Children's Clinic Hospital patients are sought through the register of the German Stefan Morsch Fund. In addition, the boy will need to be treated with caspofungin and voriconazole for the fungus, at a cost of 496,600 rubles.
Thus, 1.02 million rubles are needed to save Sasha. As always, our partner the Ingosstrakh company will contribute $11,500 (see details at ). Another 723,200 ruble are needed. Sasha's parents cannot raise that sum. The family lives in a village in Orel Region. Sasha's mother Svetlana Simakhina is with her son in the hospital. His father has also moved to Moscow and found work, but the money coming in covers only the bare necessities. You, dear friends, are the only hope. Large money transfers (ˆ5000 and above) can be made directly to the Stefan Morsch Fund. Contributions in rubles can be made to the pharmaceutical supplier or to the savings account of Svetlana Simakhina. Any contribution will be gratefully accepted. All the necessary information can be obtained from the fund.
The Russian Aid Fund Expert Council
Valery Panyushkin for the Russian Aid Fund
All the Article in Russian as of Apr. 20, 2007
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