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To Survive Till Spring

February 17, 2005, 0:00 2320 Author: Anna Egorova, yegorova[at]inbox.ru Russian Children State Hospital

The original text in Russian is published here (http://world.lib.ru/editors/e/egorowa_a_s/polina.shtml) and on the Web-site of the Russian Children State Hospital (http://www.deti.msk.ru/en/polina_en.htm). It also can be found in several internet publications. Sorry in advance for any mistakes in the translation.

Hematology Department, Box 3, Ward 2.

My life has changed a great deal since that memorable phone call. I remember it as if it were today, although several months have passed. A woman calling from the Hematology Department of the Russian Children's Clinical Hospital asked me to donate blood for Polina, her two-year-old daughter. Her tone was quite matter-of-fact and revealed nothing of what was actually happening to her. I promised to come.

It is not that she called all of a sudden. I provided my phone number at the Web site of the Russian Children's Clinical Hospital as a potential donor and filled the form. But I just did not think somebody would actually call. However, this happened, and in a fairly short time. And so I am at the Hematology Department.

The woman's name is Natasha. She is only five years older than I am. And Polina turned out to be a wonderful kid of 2.5 years, hairless after the chemotherapy, with very beautiful blue eyes. They have already spent 8 months at this hospital; Polina has leukemia and infectious sepsis after the fifth course of chemotherapy.

Telling all this to me, Natasha suddenly started crying. Afterwards she was surprised herself: "Actually, I weep seldom, but now, all of a sudden..."

After I donated my blood for granulocytes, Natasha urged me to enter the ward and meet Polina. I clearly remember my first impression: the door opened, and there was a tiny girl standing on the floor, smiling happily, stamping her feet.

There was a long tube inserted in her breast. Polina saw me and became shy, embarrassed, silent. Although before that she danced and laughed in spite of the tube, which was connected to a huge apparatus, larger than Polya herself: antibiotics, glucose, analgesics. She needs granulocytes every day to get rid of the infection. She shows her thumb and says "it hurts." The thumb is all red and swollen. When a body lacks its own leukocytes, the immunity is almost zero, and any scratch may cause infectious sepsis, that is, blood poisoning.

Afterwards Polina was no longer shy of me but often became silent because of the pain...

This is how it all began. I decided to phone and ask about Polina's condition. And heard that the situation is bad: the infection does not cease, the thumb does not heal up. Donors are needed, but there are none. Out of 48 persons that filled the form at the Web site, only two responded. I started searching for donors. Found Katya, my colleague, and then three more. But still there were not enough people to donate every day. So we had to donate twice: Katya and I. And Dima, Polina's father, donated for the second time only a week after the first one, although this is bad for the health and not recommended by the doctors. But what could he do if there are no donors?

During these days, I got so much used and attached to Polina and her parents that I just could not forget about them and started visiting them. Polina was tied to her apparatus and could not even go out into the corridor. Natasha was upset that the girl could not speak to her granny and grandpa, who live far away, in the Bryansk region. I brought my old cell phone to them and was very glad to hear that Natasha and Polina could at last speak to her granny on the phone: Polina was afraid at first but then started chatting!

Polya turned out to be a great fan of phone talks. I call, and she asks Natasha to give her the receiver. I ask, "How is life?", and she answers, "Na'mal" (normal).

Then I come to them and enter the ward. It always seems to me that I am a carrier or source of infections. Everything must be sterile there, Pelican (a setup for air cleaning) is hanging from the ceiling, there is a quartz lamp, floors must be washed twice a day, everything is disinfected. You change your shoes, put on a smock, a mask is also desirable, but Natasha said a mask is not necessary.

If Polina feels good, she likes to dance with her mother or with Katya, the doll. Natasha teaches her various pas. And when Polina feels especially good, she runs about her ward. The ward is tiny, three beds, two steps long, but Polina still manages to run to and fro. And Natasha is afraid that she may fall down, hurt herself and have a bleeding. When I am there, I am also constantly afraid.

Polina is very keen on playing hide-and-seek. Each time she is really worried that we will find and catch her, although there is but one place for hiding: behind the big bed. But when we find her, she laughs out loud.

Natasha tells me, "When we first arrived at the hospital, we were allowed to go out and went to a supermarket. Polina liked it so much! We rolled her in a shopping cart, and she squealed with joy."

Once Natasha asked me to bring an empty spray can, the kind nurses use for disinfection. Polina likes them very much, but she is not yet strong enough to use them. She also likes and collects disposed syringes and catheter caps and "treats" her doll Katya and her animals or just plays with them, pretending she is filling them with a medicine. She knows everything about the catheter in her breast and does not try to pull it out, as many children do. She even shows it if you ask her. When Natasha asks her, "What will you be when you grow up?", she says she will be a doctor. She knows medical nurses, recognizes when they bring packs of blood or blood cells and says "b'aad" (blood). Because of constant transfusions, she often has fever, and then she lies in bed, quiet and silent. She has bruises all over her body because of transfusions and demonstrates them to me. When the apparatus is disconnected, she asks, "Where is beep-beep?" On the whole, quite a competent doctor.

Polina is very independent. Always asks to give her a potty, sits down on it by herself. Once Natasha wanted to hurry her up and put her down on the potty.

Polina was offended and even cried that her mother does not think her an independent girl. Even at night, if she felt well, she asked for a potty herself.

Before visiting them, I always phoned and asked Natasha what they might need. Once I asked, "And what does Polina like?" Natasha said she did not know. Polina wants a different thing each time. Sometimes she wakes up and asks for a meatball, sometimes for a banana or chicken. Once she wanted to have some nuts, but this was forbidden by the doctors. One of their acquaintances, Sasha, brought her some red caviar. Polina liked it very much and called it "berries." Once Natasha asked me to bring her some minced meat. Polina liked meatballs very much. Natasha made tiny soft meatballs for her, and Polya ate them with great pleasure.

This is why I phoned each time. Polya spent many months in her ward without going out! I just wanted to distract her a little.

Gradually I learned the details about Polya's illness. She has leukemia, the worst and most malignant form: M7. When Natasha and Dima learned this in May 2002, they rushed to the RCCH. Polina was just above a year and a half. She had chemotherapy. Natasha tells me, "Her hair fell out, but not all at once, rather part after part: here it already grows, there bald spots appear." She is already bald on the photographs. However, tender fair hair began to appear again when I was there. And she has such beautiful eyelashes! So thick, so dark! The family was allowed to go home after the chemotherapy, but less than a week passed before the tests showed a relapse. They had to go back. Polina entered the department all by herself, without any help. And now she was chained to the apparatus and could not even leave her bed by herself.

There was no way out. If there was a relapse, the only way of treatment is marrow transplantation. Polya had a chemotherapy course, then two more. All in all, there were five courses. After the fifth course, aplasia began. And no remission. Marrow transplantation is possible only during a remission, when there are no blast cells in the blood. And she had them. The family spent the New Year holiday at hospital. Santa Claus came to the department. Polya recited some verse about the Buzzing Fly and was given a doll named Katya. Natasha says that she was very glad and remembered this event. Since then, seeing Santa Claus on TV, Polya shouts, "Santa C'aus!". When Polya is not embarrassed of anyone, she sings and recites verse. She can recite about the Buzzing Fly and about a girl who lost her ball. When she received audio tapes with child songs as a present, she always joined the singing:

The most fairy and fantastic,

The most magic flower.

Now she was most glad when Vladimir Shishkarev came to her ward with his synthesizer, played and sang for her. Polina once received a child cosmetic set, and she liked coloring her fingernails and eyelids and to stick tiny clips onto her earlobes, two on each ear. They became her so well! I enter her ward and see her with earclips, so beautiful and so proud!

Fortunately, Polya's sepsis was cured. She had blood transfusions every day for a week and a half. Natasha telephoned potential donors all the time, non-stop search went on. Many and many thanks to Sasha, Fedor, Louise, Kolya, Oleg, and other people who agreed to help, to say nothing of Katya, who donated her blood twice with only a week's interval. Natasha said, "This is the first time I see such a thing: these people were absolutely unfamiliar to us but helped so much." And the leukocyte count became normal again. Little by little, the thumb was healed. But the blast cell count sharply rose in the meantime. It is so horrible when "they rise"! We waited for the results of the puncture every day. There were 60% blast cells in the marrow. Further treatment was useless. M7 is the most dangerous form of leukemia, and it did not respond to chemotherapy in Polina's case. And the doctors said that the only thing is to wait. Doctors don't say "and to hope for a miracle," maybe because doctors don't believe in miracles. I have always thought that I don't believe in them either, but still I hope for something. Maybe for an impossible miracle. Can't it happen just once?

For Polina and her parents, the formula "wait and hope for a miracle" meant a new change in the treatment - actually, a cancellation of any treatment. If Polina had pains, she just received some analgesics. She had infusions, glucose, antibiotics in case of fever. They could not leave the hospital, because Polina had very low blood counts and had to undergo blood transfusions every day. But she was disconnected from the apparatus, and Natasha told me how they went out into the corridor for the first time in many weeks, and then even went outside for a walk. All in a mask, of course, but still something! When Polya went out, she always wanted to go somewhere on a "lil' train" or "lil' bus" and looked forward to traveling on a "lil' ship." We wanted to go for a walk with her, to take her on a ferry along the Moskva river. And Natasha said, "If we survive till spring, we'll go there."

Twice they went to monasteries in the Moscow region, the whole family together, and the doctors said that "it seemed the parents were more tired than Polina" - she liked it so much! After going out for a walk, Polina did not want to go inside again. And then, one evening, I phoned, and Natasha said that she was praying about a miracle. But the miracle did not happen. Polina felt worse and worse. When I come, I see her playing less and less and lying in bed more and more. She felt altogether bad at nights, but sometimes still distracted her in the afternoons. She still liked drawing with markers and gouache, colored all pictures she could see. She was glad if anybody brought her a kinder surprise egg - she was just crazy about them! She unpacked it herself (when she managed to do it), quietly ate the chocolate and watched the grown-ups to assemble the toy for her. We often looked through books. There are lots of wonderful children's books at the department: illustrated fairy tales and verse, a child Bible. Polina looks at the pictures and tells what they are about. Natasha asks her, "Who is this?", and the girl responds, "goffee" (gopher) or "polkat" (polecat). She tells stories according to the pictures. And when we look through the Bible, she points at a picture and says, "This is God."

Polina had more and more pains: in her arms, her legs, her head. Sometimes she complained and started to moan, and sometimes I just saw her with her head in her hands, wincing and silent. I asked her, "Polina, does it hurt?", and she did not answer. Just looks and does not answer. I telephone them, and each time Natasha says, "We are still sitting here." Sitting and sitting, and Polya has more and more pains. Finally the doctors proposed to use morphine, but Natasha was afraid. Under morphine, one becomes languid, indifferent, like a vegetable. But once I phoned and Natasha said that Polya had been feeling so bad that they had had to use morphine. It was so terrible that we were even glad when the morphine was cancelled. Although there were no more reasons to be glad. I phoned them every day, and each time I was afraid to hear the worst.

On February 24, Polina felt very bad. She gasped for breath, could not pee, and she was taken to the intensive care unit, although her parents did not want this. We thought it was the end. When Natasha phoned me in the evening, I thought I would not see Polya anymore. But she was brought back to her ward next morning, all covered with tubes. She could not breathe without a mask. I came to visit her, and she was lying there, so little, so exhausted, under morphine, and breathed so heavily. Natasha and Dima took care of her in turns, three hours each, and slept also in turns.

February 25 (diary record).

Now Polina was taken back to her ward again. They said she would live one day, maybe three. I thought I wouldn't see her anymore. Imagine that she was running and laughing just a week ago! She had guests from other wards, Vadik and Andrei with their mothers, and Polina was so happy! She played and danced the whole evening afterwards, and then we played as if we were flying on an airplane. But now she will not dance anymore. She is conscious. Natasha asks her something, and if the girl wants to say yes, she moves her hand. She cannot speak because of the mask. She tries to take it off but has no strength left.

March 1.

Polina survived till spring, but it was so painful! Natasha cries and says, "Let her die, I see that this is the end, she suffers so terribly, why should she bear this?" The oxygen is down, the pressure is down, and when the nurse entered, Natasha asked her to give some analgesic, to do something, because the girl is suffering from pain, something is hurting. And the nurse said, "EVERYTHING inside her is hurting now."

When she was first taken to the intensive care ward, they said she would hardly live one day. Then she got there once more. I was afraid that she would die there all alone, so small and helpless. But she was back. And now a week has passed, and she is alive. She does not speak, only cries and moans, breathes heavily and looks with such exhausted eyes. Somebody said that this is a miracle, but some wrong miracle, a miracle that should not have happened. A very cruel miracle. She is conscious all the time. When somebody calls on the phone, Natasha brings the receiver closer to Polina, and she calms down a little. We read fairy tales and sing songs to her. We can speak to her: she hears and understands everything. But the oxygen is falling down and down. If they use morphine, the pressure will fall down, and she will be taken to the intensive care. If there is no morphine, it is horrible to see her pain. I hear her breath in my sleep.

A neighbor came, brought the noodles Polina wanted so much, in the form of letters and digits, it was impossible to find them earlier. But Polina does not need them anymore. "We need nothing now," says Natasha and cries.

It lasts so long. And still, each time I phone and think: let her be alive, let me see her once more!

Polina was born on September 8, 2000. Died on March 3, 2003. She would be two years and a half in only five days.

I re-read this and understood that it was wrong to write like this. Only medical details. I wanted to write about Polina herself, to show what a wonderful kid she was. But it turned out to be a medical report. And many things have not been said. But what can I do if her whole life was filled with pain and torment? I can explain why I sometimes wrote this in the present and sometimes in the past tense. I saw Polina dying. But I just cannot realize her death, as if I don't believe in it. Maybe because I did not see what happened afterwards, did not, with Natasha and Dima, dress her in a white frock and white summer cap, which was so difficult to find in Moscow in the early spring, and did not bury her, so tiny and so helpless. This is why I am confused about the tenses. Maybe this is on purpose, as if she were alive now. For me, she is still a merry girl with sad eyes, who takes her head in her hands when it hurts and does not complain.

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