Hematology and oncology ward in Zaporozhye's regional children's hospital, 2006
In 1997, my life divided into ābeforeā and āafterā. Maybe if you look from outside you would not notice anything significant about that ā I spent 3 weeks in regional children hematology department. How could those 3 weeks change the life of a thirteen year old? But these 3 weeks, these endless 21 days turned my life upside down, from that moment on it was never the same as it used to be.
It was the cruel lesson of destinyā¦ I donāt know why God chose to show me, 13 year old girl, that nightmare. Maybe it was done so many years later I could tell healthy people that hell exists. Itās here, on the earth, in the usual childrenās hospital, in hematology department. Maybe I got through that hell so other could know what really stands behind boring statistics of the numbers of cancer diseases among children.
In these stories I tried to deliver the moments that I remember the best. Moments that impressed me and moments that shocked. Something I always kept silence about, not having any strength to relive, even in my mind, it again. I hope that from these stories a reader can form a vivid view of the world in which hundreds of children live in Ukraine. The world which is full of fear, sorrow, and also hope and faith.
Escape from death
When I first showed up at the door of children hematology department, I couldnāt even imagine what that was. I could barely combine two concepts ā children and cancer. It seemed that someone made a mistake explaining that children with blood cancer live here. It just couldnāt be possible.
At first the department looked the usual one, and children looked like other children everywhere else. But two days later I saw the difference. Bald kids said the word ādeathā so normally, like we would say ābreakfastā. It seemed hat death is somewhere in the air. You can feel it on your skin. Despair and boundless optimism coexisted here in an incredible manner. I heard some kids saying āIād rather die, than do chemo againā, others cheerfully touching their bald heads were making jokes that they would be saving a lot on shampoo.
And also eyesā¦ Eyes impressed me the most. They wereā¦ I canāt even describe itā¦ they were reflecting absolutely adult emotions. When a new patient was saying some like āI will soon go homeā others would look at him with lenience and irony. You could read in their eyes: "You donāt understand anything in this life". Sometime you could see an unbearable pain in these eyesā¦ it would come and go, in flashes, for a couple of seconds, and then the light of life would be on again. It wasnāt just the physical pain, which was very usual for most of the regulars. It was more a mental anguishā¦ memory of the horror that sometimes occupies the hospital and reminds that everyone is mortal, even kidsā¦
I donāt know why but it took a week to understand the atmosphere of the department, I began to understand what was clear to the regular patients and what didnāt mean a thing to kids with anemia. I couldnāt understand everything with my mind, but my heart knew, that this was a terrible place, I had to get outā¦ my soul wanted to come back to the normal world, where everything is easy and clear. Where there was no depressing anxiety.
This was 21st day of my stay in hematology department. I saw doctors rush in the room across the hall. They were rushing which wasnāt usual for the department. I saw a nurse bringing an IV dropper into the room, another nurse was yelling something on the phone. A young woman left the room, she was the boyās sister, who stayed with him for the period when their mother took his analysis to Kiev. The woman was crying. Not like people usually cry from sorrow or offence. She was just sobbing, tears were running down her cheeks. Looked like she didnāt even notice this, she was wandering around the hospital halls. Someone made her sit down on the nurse chair, someone brought her water. The woman wasnāt reacting, and I think didnāt even notice.
They put a white sheet on the room door across the hall. I already knew this department pretty well in order to understand this sign ā some one was feeling really bad there, they put a white sheet so other children couldnāt see that. Doctors were running in and out of the room, I noticed there was blood on their handsā¦ a lot of blood. Then they brought a wheelchair into the room. When the sheet moved aside, they took a boy out of the room. A pale blond boy, 14-year old, his diagnosis had a mysterious āc.d.ā in it. Everyone in the department knew what it meant, only doctors and parents pretended that kids didnāt know. The boy was sitting in the wheelchair, he pressed his legs against the chin, because the wheelchair did not have any footsteps (it just didnāt fit the elevator that way). He was wearing a white shirt and shorts. She shirt was whiteā¦ now it was all red and soaking wet. Blood was everywhereā¦ on his hands, legsā¦ He was holding a cloth by his face. He moved the cloth away just for a second, and the blood gushed from his nose. He pressed the cloth harder, and I saw blood running among his fingers. They were taking the boy to the ER centerā¦ I heard someone "this is the endā¦". Later I will find out that kids from our department get transferred to ER in rare cases and often they do not come back from thereā¦
In half an hour I heard a chair moving along the hall. I saw them rolling the boy in it. He wasnāt carryingā¦ I think there wasnāt even fear in his eyes. He just couldnāt understand what was going on. ER refused to take him seeing that heās too sick. Because they had to report every deathā¦ For ER this boy dying from bleeding was just a statistical thing. An undesirable thing. They just didnāt take him there saying that he would be better off dying in his roomā¦ only our health system could generate these traditionsā¦ Painful death from bleeding in the regular department where they couldnāt even isolate him from other kids. And this was better than decrease of statistical figures.
When they were taking the boy into the room, he held back the sheet. A bloody print of childish hand was left on the white sheetā¦ Doctors ran into his room againā¦ I saw nurses bring new bottles every 10-15 minutes. The boy was losing the enormous amount of blood and it has to be substituted with something. But they didnāt have that much blood in the hospital. Even more, if they use all the blood they had they would be jeopardizing 10 more children in the hospital which may need that blood any minute too. Thatās why they were just giving him the brineā¦
I couldnāt hear the boyās voice. I heard only doctorsā orders to bring this or that. The boyās sister was still sitting at the nurse post. Her face looked as if made of stone, tears were coming down. She was looking right at front of her, not noticing anyone. She wasnāt answering when someone was offering her water or drops. She was just sitting there looking through the walls. Sometimes her lips were moving, but no one could hear what she was saying. Maybe she was praying and may she was asking that question the one that later she will be screaming out: "Why he???".
The whole department stood stillā¦ Hospital staff was cleaning bloody stripes off he floor which were left by a chair stained in blood. They were trying to do it as soon as possible until kids notice this, but everyone already knew. Children got together, and they looked panicked. The death in this department means destruction of hopes of others to leave this place alive. It was quite, everyone was waiting for the outcome. Only some kids with anemia were arguing about something. Maybe they didnāt know what was going onā¦ maybe this was their luckā¦
They were rolling the boy to ER past our room twice. Twice they refused to take him. When they were taking him back for the second time I saw his face and understood what ādeadly whiteā phrase really means. His face was covered in blood, but you could still see that his skin was completely white, without any rose shadows. His eyes were half closed. Legs were slipping of the chair, the head hanging over to the side. Doctors were plucking him, he was opening his eyes, looking at them and closing them again. He was dyingā¦ dyingā¦ and all other kids were witnessing thisā¦
I will never forget how all doctors and nurses left the boyās room accurately moving the sheet aside. All togetherā¦ a nurse was carrying an IV bag which was half full. I looked at it and everything became cold inside of meā¦ I knew that the boy had died. I just knew thisā¦ I looked at the white sheet with his print on itā¦ I was scared that the had dry out yet, and the boy doesnāt exist anymoreā¦ he doesnātā and he never willā¦ I turned to the wall and criedā¦ I cried for a boy I met 2 days ago for the first timeā¦ I didnāt even know his nameā¦ I was lying like this when I heard a scream in the hall. That was the boyās sister. I heard others trying to calm her down, but she was "Why???". So much pain and despair in that scream.
Really, why? Why does it happen? This question was torturing me as well. I heard like someone took the girl out of the departmentā¦ she was still screamingā¦ I wanted to scream as wellā¦ as loud and terrifying as she wasā¦ but I couldnātā¦ I was just cryingā¦
In couple of minutes they gathered all kids in the hall and took āfor a walkā in order to take out the boyās body without witnesses. They took us out of the building to the pergolas. It seemed like we were under escort: everyone was silent, eyes down, not paying attention at anything. I saw a lot of kids cryingā¦ they were silent and cryingā¦
Some children who were diagnosed āc.d.ā sat down separately. These were 10 children of various ages, they sat down close to each other, some put their hands on their neighborsā shoulders. They were sharing their sorrowsā¦ they were trying to come down after a death storm whirled over themā¦ today wasnāt their turnā¦ and tomorrow? Yet this morning many of them believed that they would recover, they would lead normal life again. Now no one though thatā¦ even Lesha ā a five-year old. He was cryingā¦ Maybe because of a common mood. Maybe because he felt like other children that death showed its power and reminded everyone that it was the master.
One boy jumped up and shouted "Whoās next? Me???". Everyone started. He said out load what everyone was thinking. The oldest girl hushed at the boy. He sat down and cried again. But his question stayed in my head. And somehow I began to fear that I was the next. Yes, me. Healthy and feeling wellā¦ the fear grew inside of me. It seemed that if I enter the hospital death will take me too. It was a panic attack, everything grew cold inside of me, blood flood from the face. I felt that Iād rather die here than go back to the hospital, that hellā¦
When they took us back, the white sheet with a bloody print was still on the door. Hospital attendants were cleaning blood off the walls, floor and beds. We were supposed to see this, thatās why we saw a bloody print of a child, who didnāt exist anymoreā¦ This gave us shivers. But this wasnāt the most scary thing.
The most scary thing was that adults were acting as if nothing had happened. As if it was a usual day, and that boy is still thereā¦ and heās fine. This total pretence made it even more unbearable. It seemed that only kids mourn for the boy, and adults just didnāt care. Doctors put on smiles, parents got busy with usual stuff. It seemed that adults live in one world, and we, kids ā in another one. And those worlds were really far from each other at that moment. And it was really scary that you will die tomorrow and no one but a dozen of kids will care about this.
I was sitting and looking at the print, not taking my eyes off even for a minute. I was cryingā¦ everyone saw that, but no adult came up to me and asked what happenedā¦ only a bald 7-year old boy approached my, took my face and turned me away from the print. I looked at him and silently said "Get used" and left. Then these words sounded blasphemous, you canāt get used to this!!! You canāt live with this!!!
I had only one wish ā run from this terrifying place. Run without knowing where but as far as possible. I couldnāt stay here longer. I was going madā¦ Iāve got to leave, leave, leave ā I was thinking about this again and again. I knew what to do. I went to my room, took a hryvna that was placed into the bookā¦ this should be enoughā¦ I put all my things into the bag, put on all warm clothes that I had and silently left the hospitalā¦ I was walking under the rain in slippers, in thin sports trousers. It wasnāt raining heavily, but the clothes got wet really quickly. I walked passed two tram stations on foot, I didnāt want to wait there, they could find me there. I walking along the tram tracts further and further from that terrifying place. I had to wait for the tram for 30 minutes under the rain. My slippers were soaking wetā¦ I was freezingā¦ but not for a minute I was sorry that I had left. It seemed that the further I was from the hospital, the more peaceful I was becoming in my heart and soul. A tram was riding through the night city. No one paid any attention that I wasāt dressed appropriatelyā¦ no one paid any attention at my tearsā¦ no one caredā¦ the same as thereā¦ in hematology departmentā¦
I didnāt explain anything at home. I cried and kept silenceā¦ No, I was saying "I will never go there again!!!". Nothing could change my decision. Late at night when my mom heard me sobbing, she sat down next to me, she wasnāt saying anything, but I knew she was asking herself ā why did I leave? And for the first time I found strength to say thisā¦ "Mom, people die there! Iām afraid I will die too!". No, it was too scary to say this out loud. I stopped again and was just cryingā¦
Next day my parents did not take me back to hematology departmentā¦ and for a long time from then I was answering all questions with silent tearsā¦ Tears of sorrow for the boy I had seen for 2 days, but who completely changed my life foreverā¦ His name was Sashaā¦ But I found it out later ā¦
Sick children in Zaporozhye's oncology ward. March 2007
Phonebook
- Natasha, do people often die here? ā I was sitting next to a girl who battling lymphogranulomatosis in her room in hematology department. She was going through the third relapse, only bone marrow transplantation could save, which couldnāt be performed in Ukraine thenā¦
- Look here! ā Natasha took a thick phonebook out of the bedside table. It was pretty torn. ā I was writing down names and addresses of my friends who I met in hematology departments of various hospitals. This book contains addresses from the first day of my disease.
I took the phonebook. It was full for two thirds. There were a lot of addresses, a lotā¦ But the first page contained only addresses that were crossed out, and the second one, and the thirdā¦
- Thisā¦ - I couldnāt continueā¦
- Yes, these are the people who died. ā Natasha took the phonebook and glanced it through. I noticed that most of the records were crossed out.
- How can you live with this? ā it was so painful for me to see this silent illustration of excessive death-rate of children with cancer disease.
- I live thanks to this! ā Natasha tapped her finger on one recordā¦ the only address that wasnāt crossed on first 6 pages. ā This boy lived through two relapses of leucosis, but heās fine for three years now, he goes to school, heās happy with his life. I live because I believe that I will be that lucky as this boy or some other ones ā she quickly turned over several pages and showed some addresses that were not crossed over either.
- But these are individuals, the other ones die!!! ā before this talk I couldnāt even imagine the extent of the tragedy.
- If it wasnāt for these individuals, it wouldnāt worth the struggle! Ira, you know badly I want to believe that I also can fight the disease? You know how hard it is to imagine that your name will also be crossed out from dozens of such phonebooks ā¦
Natashaās address was crossed out of my phonebook exactly 2 months after that conversationā¦
A nickel
A bald 5 year old boy with light yellow skin and eye whites ran into the hospital room.
- Mom, will we be doing IV today?
- No, Anton ā said a woman looking down.
- Itās great! Does it mean I can go play with the guys?
- Yes, son, go.
A boy left, and his mother burst into tears. A boy had Hepatitis C. He got here, in the hospital, where any infection is deadly hazardous for kids. In order to support his liver and flush out excess bilirubin, the boy had to take 1 liter 200 milliliters of glucose through IV daily. It means that his mother had to buy 3 bottles of glucose, IV kit and 2 syringes daily. Two solution bottles and one syringe were lying on the windowsillā¦
- Where is Anton? Weāll be doing IV now ā a nurse entered a room ā where is the IV kit?
- Luda, I donāt have itā¦ I donāt have any money to buy the kitā¦ Lookā¦ - a woman took a purse from under the pillow and opened it. There was a picture of Anton where heās tanned and cheerful was sitting on swings. The picture was made just six months ago, a month before when his nose bled for the first timeā¦ Other than that the purse was empty. Not a single bill, no coins, Nadya spent it all for a syringe which was lying on a windowsill.
- Iām sorry. If you donāt have a kit, then we wonāt be doing IV ā a nurse left.
Nadya was tousling an empty purse in her hands. Anton was her only son, she never his father after she told him of her pregnancy. When trouble came and a child was diagnosed with acute leucosis, neuroleukemia, there was no one around to help. All money that she saved were used for the first chemo. They never bought food since then.. they were eating hospital porridge which even looked sickening. From then they to choose: food or medications. And then a day came when there wasnāt any money even for medicineā¦ not even for medications, but for IV kits as well. Nadya turned the purse upside down and a coin jingling fell on the floor. A nickelā¦ Nadya was holding a coin and thinking: "My sonās life is worth thousands of hryvnas, but I can only pay a nickel ā¦"
- Mom, whatās there you have? ā Anton was peeping through a slightly open door.
- Money ā Nadya said ironically smiling. How could you call this coin money?
- Could you give that? ā Anton reached out. Once he had a coin box which he used for collecting coins saving for rollerblades. The coin box was the first victim of his disease; instead of rollerblades they bought syringes and antibiotics.
- Here! ā Nadya sounded doubtfulā¦ What if she finds at least a hryvna and she would lack this very nickel to buy an IV kit ā¦
- Mom, what can I buy for a nickel?
- A box of matches ā answered Nadya smiling. And when Anton left a room she continued ā so I can set this building on fire and solve the problem one and for all. Whatās the use from this hospital if I and dozens of other mothers have only this miserable nickelā¦?
Why me?
It was really late at nightā¦ I opened my eyesā¦ my mom was sitting next to me and was not taking her eyes of me. A night lamp was slightly glittering standing under the bed. Because of the lamp it wasnāt absolutely dark in the room. A streak of light was lying on the floor in the lobby. I was looking at that streak and saw another one. I knew where it was coming from ā another woman was sitting next to her dying child. Sheās sitting like this for many nights in a row, like my mother. Not only at nights, but during the day too. She doesnāt eat, doesnāt sleepā¦ she just sits there and not taking her eyes of her sonā¦
It was hard o breathā¦ I couldnāt turn in the bed. Because of the constant lying in one pose my body went numb and I couldnāt sleep. My mom was napping in the chair next to me. Itās not the first night she sleeps like this, in snatches. I did not want to wake her up to ask her to turn me over. Thatās why I was just lying silentlyā¦
I was looking at the streak of light from the other room and trying not to think of what happened a week agoā¦
They carried me into the hospital, but on my way to a hospital room I saw Tanya. "Vova is alive, alive! Hurrah!!!" ā I knew that if my friendās mother is still here, it means heās still here, heās alive. In spite of allā¦ First thing later I asked Tanya to tell Vova that I was here, so he could come and talk to me. She looked down and said:
- Vova is not feeling well, he canāt come.
- OK, then Iāll go to see him, can I? ā Tanya looked at my mom, then at meā¦ there was something frightening in her eyes ā¦
- Ira, I donāt think you should see this. You donāt understand. He really feels bad.
- Well, if you he canāt be disturbed, thenā¦
- No, I donāt think itās possible to disturb him nowā¦ - Tanyaās eyes were full of tears.
They left the room together with my mom. I knew they went to see Vova, I wanted to follow them badly. But I couldnāt even sit down by myselfā¦ When my mom came back I saw that she was crying. "You really shouldnāt see this!" ā thatās all she could say before she burst into tears. And I being so childishly naive was still sure that nothing bad could happen to Vova; that Iād be able to talk to him. I persuaded my mom to take me to Vovaā¦
My friendās body was lying on the bed. Exhausted body. There was a big bandage on one eye, it was drenched in blood and was sticking out. I knew that one eye was removed because of eye-socket sarcoma, doctors tried to save at least his life. The second eye was open and was looking at something on the ceiling. I sat down next to Vova, but didnāt look at meā¦
- Hi, Vova! How are you ā I touched his hand but he was still looking up.
- Ira, two weeks he was watching TV with everyone else, then he came back into the room and complained for a headache, lied down. I went to bring him water to give him medicine, and when I came back he was looking somewhere through me and didnāt respond ā Tanya quickly wiped off tears ā Vova, look, Ira came to see you. Look at her!
But Vova didnāt react. I was looking at him with horror. Is it whatās left from my friend who always made everyone laugh with his jokes. For example, when I was inviting him to come and play with us, and he was finishing the last 100 grams of hated chemo, he was saying: "Wait a sec, Iāll finish puking and come". Heās always so cheerful and amusingā¦ 4 years of fight with eye-socket sarcoma without any results. Surgery after surgery, but tumor was getting bigger. Heās going through radiation treatment, but itās still getting bigger. Chemo followed chemo, and between them doctors tried to remove the part of the tumor that could squeeze the brain. For the last 2 years he was not fighting for recovery, it was just not possible. All treatment, all suffering that Vova had to go through was just to win a couple of months from death. I found it out now, before that I was sure that once the chemo is over, Vova can leave this place forever, his hair would grow back, hair he didnāt have for 4 years. But everything I dreamed of was utopiaā¦ the tumor grew into the brain, Vova went into coma. His death was just the matter of time. It was not possible to accept thatā¦
Tanys left the room, but I was still touching his hand and asked: "Vova, look at me! Please!!!". And suddenly he looked at me. He looked conscious!!! I gripped his hand: "Hi, Vova!!!" He bent his fingers, trying to grip my hand too. He answered, moved his lips, but I couldnāt hear any words. "Vova, everything is OK! See, Iām still here! I brought some games, get better, weāll play togetherā¦". In response he smiled, his only eye was blinking. I was sitting next to him telling him something not looking anywhere else. At that moment I so wanted to believe that everyone was wrong, his comma was a temporary thing, that now he will start his recovery. But suddenly his eye rolled, an eyelid closed and started shivering. When his eye opened again, he was looking somewhere up again. I bent forward to him, I touched his hand, I was calling out to him. But he did not hear my anymoreā¦
A week passed from then. Vova did not regain consciousness, I was the last one he somehow reacted toā¦ He was dyingā¦ I was dying tooā¦ Not being able to sit down myself I listening very hard to what was going on in Vovaās room. I still believed he could beat the death. It just couldnāt be otherwise!
It was getting dark outside, I was napping. I was dreaming that I was walking in the building that looked like a school. Halls were empty, but classrooms were full of children. A lot of childrenā¦ I was walking and I did not know which classroom I should go to when suddenly I saw Vova. I started following him, having decided to go into the same classroom he would go into because everything looked unfamiliar. He opened the door to the classroom, there were a lot of children of different age. I looked at them and I saw that hey were children who died in hematology hospital. However, there were kids who as I thought were still alive (I found out later that they all died by that night). Vova entered the room with confidenceā¦
- Vova, donāt go there, they are all dead, and you are still alive!
- Ira, I was told to come here, that this is my place. Look ā he gave a piece of paper ā It says here that this is my classroom.
- Then wait, Iāll go with you!
- Show me your pass ā I gave him a piece of paper.
- No, this is not a place for you! You should go further! ā Vova gave me back my paper.
- But why? I want to go with you, I donāt know whatās there, Iād better stay here with you ā I donāt know why but I started crying.
- No, Iraā¦ itās up to us to decide where to go ā¦ - Vova smiled, waived and entered the room ā¦
I woke upā¦ Something is going to happen, I knew thisā¦ From the very morning something was up with Vovaā¦ I saw nurses run into his room with oxygen bagsā¦ I saw bottle droppers that nurses were bringing into his roomā¦ and Iā¦ It was hard to breatheā¦ harder and harderā¦ I fainted after lunchā¦
When I opened my eyes, I saw a man bending towards me, he looked very anxious. I waned to ask what happened, but I couldnāt talk, there a mask pressed on to my face through which air was pumped into my lungs. A doctor squeezing a special bag administering artificial ventilation. I shook my head, but the doctor smiled and: "Wait a little bit. Iām helping you breathe, and your muscles are resting now. Then it will be easier for you to breathe". I was laying and looking around. I read āERā on manās badge. My mom was looking through an open door, and I saw tears running down her face. She was taking her eyes off me every time I looked at her. Something happenedā¦ I physically felt it. Emergency doctors left, and I heard them saying in the hall "she almost diedā¦".
My mom came back into the room, she was wiping off the tears. Looking at her I somehow clearly remembered how Tanya yelled in the hall "Guys, help!!!". Everything went cold inside, I looked at my mom and asked "Howās Vova?". In response my mom just shook her head and began to cry. She didnāt have to say anything else, I knew everything now. I couldnāt cryā¦ I didnāt have any strength for that. I asked: "When?". Mom looked guilty when she said: "You both felt bad almost at the same time. Vova ā about 30 seconds earlier. Doctors called ER for him, but when they came, you were not breathing. Doctors decided to save youā¦" ā my mom couldnāt say anything else, she was sobbing. I clearly recalled my dream and that room, the one I wanted to follow Vova to, but he didnāt let meā¦ "itās not up to us to decide where to go"ā¦ these words clearly reflected what had happened. It wasnāt up to me or Vova to decide who would be living, ER staff made that choice. I survivedā¦ and Vova did not... I felt an unbearable pain inside, I began to cry and yelled "Why me???". I was ashamed that I survived, and Vova was āwritten offā, they didnāt even give him any chance. We had only one chance for both of us, and I got it. Why?! Why did we have to pay with Vovaās life to save mine???
Later on I would find out that itās not the fist time (and Iām afraid not the last one) when ER staff had to choose who to saveā¦ itās like in the war zoneā¦ One child survives, another one dies. Many years would pass, but the question "Why did I have to survive and not my friend?" would keep torturing meā¦
ā¦ all for one
Svetaās scream scattered evening silence "Guys, Dimaās not feeling well". In 20 seconds, moms of all children ran into the hall. They were running into Dimaās room to help with whatever they can. They left their sick children to help someone elseās. This was the local law ā all for one! Children were divided into own and strangers. Children were common, and their problems were common too, thatās why had to be solved together.
Sick children, many of them were doing chemo that night, left alone. The ones who were āin chargeā were not the older kids but those who could get up, jump out to the hall and yell for help. I was left at the care of Anton, a 5-year old, because I couldnāt even turn by myself in bed. Anton took playing cards out of the nightstand, moved the IV pole (which held two IV systems ā mine and his) and sat down next to me to his favorite game ā drunk man. It was 10 pm and we both knew that we wouldnāt go to bed earlier than midnight. Our moms were busy saving Dima, that means there was no one to look after our IV droppers. But we were not offended by this. We knew that any minute if needed everyone would do the same to save me or Anton.
Dimaās nose was bleeding, heavily. Blood was filling up everything, it was hard for him to breathe. He needed oxygen. But it was not connected to out department. There were just 3 oxygen bags. They could be filled in ER. But there is a 5-minute walk to ER center, if you walk really fast, almost run. One bag was enough for 10 minutes maximum, but more often ā for 7-8 minutes. Thatās why two youngest and healthy moms made a line: they were continuously running to ER center, filling the bags, running back, giving the full bag, grabbing the empty one and running again to ER center. It was really fast. 4 floors of steps, a lobby, 1 more floor and a hall. Then backā¦ Of course, you could take the elevator, but itās so slow, you have to move fast, faster, more fasterā¦ you do this dozens of timesā¦ Nadya, Antonās mom, running past our room with an empty bag, drops in just for a second. She glances at our droppers, trying to figure out can she be back by the time bottles get empty. "Donāt worry, mom, we are fine. When the bottle gets empty Iāll go to get Natasha " ā Anton said reading her thoughts. Nadya looks at the watch and understand that sheās behind the schedule. If she doesnāt make up for this minute, Dima could stay without oxygen. Sheās running towards the stairsā¦ She has only one thought ā to be there on time, not to let down, to do everything to save another child.
Three other moms are in Dimaās room, they are warming up a bottle of plasma in their hands. It has to be warmed up slowly, with the body temperature. The bottle is frozen to the ice temperature. Each of them holds a bottle in her hands for 5 minutes and passes it to another one. Then she tries to warm up her hands up to the time when she gets the bottle again. Another mom is eating water with the boiler (because thereās no hot water in the hospital), wets cloths and gives them to moms whose hands are really cold. SO much depends on each of them. And they are just peopleā¦ women, exhausted from sleepless nights, they forget to take a meal and itās been long time since they ate meat. But now they are not even thinking about thisā¦ they know only one thing ā they have to save Dima. No, they donāt have toā¦ itās not done because of the call of duty or because they want to get the same attention when they need help. They do it because it canāt be the other way. Dima is their common child, he can die. And they will do everything they can to prevent this.
My dropper was almost empty, about 20 grams left. Anton sees it, gets up from chair, moves it towards the pole and climbs the chair. He canāt call anyone else, because we are āchained upā. There is not enough poles in the hospital, thatās why usually two kids do chemo together. And now Anton even lifting the pole can leave my bed only to the distance of my dropper. Thatās why he overlaps the clamp on his system, takes off the bottle, and holding the bottle goes into the room to call my mom. He knows that he has to call someone from moms, you canāt rely on nurses. Not because they are bad, but because they are always busy. Any mom can walk into the room and change bottles. Anton is coming back with my mom. Itās her turn to warm up the plasma. Not wasting a second she gets down to business. "Hold this" ā and now Iām holding an icy cold bottle of plasma. The faster itās melting, the more chances Dima has. Thatās why it canāt be left without warming up, thatās why while mom is changing bottles, Iām warming up the precious bottle of plasma.
My mom changed the bottles and left. And we are together with Anton again. A funny couple ā Iām 14, heās 5. But age doesnāt matter here. Anton and I can understand each other without words. We have common enemies, common purposes and common fears. And also a common duty towards other childrenā¦ Only 2 nights ago everyone was helping Anton, who down with a high fever. Dimaās mother, Sveta, at 1 am in a nightgown and a robe was running to a closest supermarket to get a bottle of vodka to rub Anton. And tomorrow Antonās mother will run to get oxygen for me. Itās been long time since we were dividing each other depending on age, wealth and moms. This just doesnāt matter. The only thing that matters is that we are all living on the edge and everyoneās task is not to let another person down.
Nadya runs past our room hundreds of times. Every time she glances at our droppers and our faces. Everything is fine, you can run. Iām freezing, but I canāt reach to get the blanket. I ask Anton. He covers me with the blanket, adjusting it on the chest and legs. He knows I canāt do it myself. My mom walks into the room: "Guys, we need one more bottle of plasma, can you warm it up?". She didnāt even had to ask about it, it just canāt be otherwise. Itās midnight, but Anton and I warming up a bottle of plasma. We donāt take as a duty. We donāt care if we have to warm up this bottle for Dima or ourselves. We donāt even think of getting irritated that our parents donāt put us to bed. Our sleep doesnāt matter when Dimaās life is at stakeā¦
Our moms came back to the room at 1 am. Nadya fell on the bed, she had to run 5 floors up and down dozens of times. My momās hands were white from cold. Antonās and mine hands were also cold. But Dima was aliveā¦ they were chances to believe that he would live till the morning. And all our inconveniences didnāt matter. We went to bed happy, because we knew that today we saved Dima. Tomorrow there will be a new fight. For someone else, maybe for me or Anton. But we knew that if needed something children in all rooms would be staying up late and warming up bottles with plasma. We didnāt have any doubts in it, because the main law here is all for one!
Set the soul freeā¦
A white sheet is attached to the room door. Itās really late at night, but the light is on. Womanās silhouette can be seen through the sheet, sheās sitting at the bed. Sheās sitting still, sometimes her head drops on the chest ā she does not sleep for many nights, she is very tired. She falls asleep for a couple of seconds but wakes up right away with horror. "I shouldnāt sleep, I shouldnāt!" ā sheās saying these words again and again. Sheās sitting by her daughterās bed. Her daughter is fatally sick. A girl is pale and exhausted. She canāt swallow for 2 weeks. Respiratory failure is building up with every hour. A child is dying from asphyxia.
An doctorsā¦ decided that the tumor was inoperable. And all they could offer was a deadly portion of hypnotic medication āto the soul freeā. A doctor called a simple way out to save Natasha and her daughter from suffering. Natasha refused. She didnāt believe that was it, she hoped her daughter would get better soon. And only that believe helped her sit by the bed for many days and nights.
A girl was semi-conscious. Her consciousness was obscure because of the lack of oxygen; she either was falling asleep or groaning. She hardly talked, it required too much strength, and she just didnāt have it. A week ago doctors cancelled all supporting IV procedures. They decided that all those procedures were unnecessary. And now the girl was suffering not only from shortness of breath, but also from thirst. Sometimes she was whispering in her sleep "water, water". She saw water in her dreams, and she wanted not to survive but to slake her thirst. She couldnāt do it, thatās why she was just crying when she heard the sound of pouring water.
This night the girl felt really bad. She was hardly breathing and sometimes stopped for 10-15 seconds. The mother didnāt her eyes off her hardly moving chest. And then the real hell began ā the girl sighed painfully andā¦ and began turning blue. The breath stoppedā¦ Her mother was looking at her blue face with horror. She knew what to do ā she jumped off the chair and started to do an artificial ventilation. She didnāt ask anyone for help, she knew that it was useless ā department chief doctor prohibited all active interference related to life support. In developed countries itās called āpassive euthanasiaā and considered illegal, but in our country they carefully called it āto set the soul freeā. Natasha was breathing air in again and again. Even now she believed that itās worth trying. In 10 minute the girl took a couple of breaths. But in half an hour she wasnāt breathing again. And here goes āmouth-to-mouthā again, till she gets dizzy and nauseous. And there is only one thought ā not to fall down, not to faint, because her daughter desperately needs this air, the one she canāt breathe in by herself. The fight lasted for several hours. And when the girl opened her eyes for the next time, they were showing such a great pain. "Mom, leave me alone, donāt breatheā¦ let me dieā¦ I canāt live like this" ā you could hardly hear the girlās words, she was crying.
The woman closed her face with hands and went to the other side of the room. She heard the girl sigh for the last time and became quiet. Natasha was sobbing, silently. She was biting her lipsā¦ till they were bleedingā¦ not feeling any pain. She was sitting, her eyes were closed, and suddenly she stood up. She looked confidentā¦ she rushed to save her daughter. She was all blue, there was no pulse. The heart stopped. This was the end. But the mother knew she could change it. No emotions, like a robot: 15 chest compressions, 2 breaths. And hundreds of times like this. She wasnāt looking at the watch, wasnāt thinking what the damage to the brain would be after a cardiac arrest. She had only one thing in mind ā she had to save her daughter. And making the next ābreathā she put her hand on girlās neck and felt the pulse. The heart was beating again. She was still doing CPR with such an enthusiasm as like she would win the battle with the disease. As if she cured her daughter, she would be healthy again.
When the girl came to her senses, she felt the taste of blood in her mouth. Then she didnāt know that it wasnāt her blood, but her motherās when she was biting her lips watching her daughter die. The girl knew only one thing ā her mother brought her back to life. Here, to this world of endless asphyxia and thirst. Then she almost hated her mother. She believe in long and happy life. She didnāt believe this night taken off from death means something.
But her motherā¦ as if she knew what for she fought the death. As if she knew that 7 years would pass and I would tell her āthank youā that she didnāt set my soul free then. Thanks to her I got a chance to live these 7 years in spite of a tumor. 7 years of fight with disease, but stillā¦ itās 7 years. Even now my mom still sits by my side watching me breathe. She knows that there will be many battles for my life ahead. But she also knows that she would never let my life go. Even if the situation seems desperate. Even if the heart stops, she wonāt let my soul freeā¦
Mothers... March 2007.
Climbing the wallā¦
"Again, why again!!!" ā everyone in the hall heard Sveta screaming. My mom just took me to the hall to watch TV, but we didnāt make to the TV set, we heard the scream. I saw Sveta standing by her room and climbing the wallā¦ literallyā¦ She was scratching her fingers to they bled, bloody stripes were left on the wallā¦ But Sveta was still grasping the wall, trying to climb it. Where? Why? I didnāt know, she didnāt know. Dima was screaming from the room "Mom, please, donāt, momā¦". Sometimes this scream was being interrupted by crying. And sometimes ā by coughing. My mom left me in the hall and ran to Dimaās room. I heard her calming him down, and he was screaming "Whatās with mom?". Several other moms ran up to Sveta, trying to tear her away from the wall. But she was breaking loose off their grips and coming back to the wall. Again and again she was grabbing the wall and screaming "I canāt, I canāt!!!". I heard someone called ER from the staffroom. But Sveta was still screaming and climbing the wall. The sight of this was chilling. I wanted to close my eyes not being able to see this, I wanted to shut my ears not being able to see her screams and Dimaās crying. I wanted to escape this hell. But I had to watch this. Some other kids had to watch it tooā¦ and there was no medical staff aroundā¦ one nurse was running around Sveta with a glass of valerian drops.
Some moms were trying to pull Sveta off the wall. They were crying tooā¦ because of their weakness, offence and fear. My mom rushed out of Dimaās room. Her hands were covered in blood. "Sveta, where are the drugs?" ā she was pulling her about, trying to find where the drugs are that would save Dima. But it was useless then. Sveta became hysteric because her sonās nose was bleeding again, and she only had 4 platelets. It means they wonāt be able to stop bleeding for several days, this means they have to look for donors again. But where can you find them if he needs blood almost every week in huge volumes. Nose bleeding means nose tamponade under general anesthesia, after which Dima will be gaining consciousness long and sorely. And he will also stop breathingā¦ She just didnāt have any strength to go through this again. It was beyond her strength!!!
Elevator door opened. ER staff ran into the room. Hematology department head met them at the door, whispered something and left. She dropped her eyes when I looked at her. She just dropped her eyes, she didnāt think to turn me so I couldnāt see this. And I didnāt have any moral rights to ask anybody elseā¦
In spite of Svetaās resistance ER doctors gave her an injection. In half an hour she began calming down. In half an hour! But for 30 minutes she was screaming and climbing the wall. Again and againā¦ and we all saw and heard this. And we, kids, were terrified what our disease does to our mothers. And also there was shameā¦ we were ashamed for our sickness, for condemning our parents to suffering. "If tomorrow my mom will be climbing the wall, it will be only my fault!" ā each child thought thatā¦
Sveta began napping, someone took her to my room. Someone stayed there to look after her so she doesnāt do anything stupid when she wakes up. The others rushed to save Dima. My mom ran past me to the room and went back with a purse. Dima needed drugs, no one knew where Sveta keeps her purse. And my mom without any hesitations took her moneyā¦ I saw someone else take a purseā¦ someone slipped on a coat and rushed to the drugstore. My mom was sitting by Dimaās bed and asking him to calm down, that night she was sitting next to him when he delirating after anesthesia. Doctors were giving Sveta soporific injections again and again not letting her wake up. Nadya was sitting next to her not turning off the light. And also she taking care after her own sick son and me. She was turning me around, feeding and giving water.
My mom and her didnāt sleep for the whole night, then another mom took over, someone else started to take care of Sveta. For 3 days she couldnāt walk to the room with her son. She was never alone, every time she walked to the bathroom someone was with her. Once walking past the wall she tried to climb at she looked at the scratches, then at her nails and asked: "Was it really meā¦?". And when finally she was allowed into the room, Dima looked at her and said: "You do this again, Iāll jump out of this window!!!". And began to cryā¦ Sveta was crying too. But that was a different cry, silent and helpless. She hugged her son. She was pressing him against herself and felt shame that she left him alone without her help when he really needed it. Other saved him, people who have problems too. That night she was walking to every mom who was dealing with her or Dima, taking their hands and pressing them to her heart. No one ever reminded her of that day, when she was climbing the wall trying to suppress the despair that was overfilling herā¦
I want to live!!! Daniil, March 2007
The balcony
"Guys, mother fā¦, who left the balcony open???" ā Lena finished the question with couple other unprintable words. Then she told someone: "Katya, why are you standing there, come here!". She was saying this in a strange tender manner, everyone in the department knew her wild temper and sharp tongue. Thatās why moms from all rooms started to come out to the hall. Katya, a young woman, got here with her daughter a week ago, and now she was standing by the railings and was looking down. Everyone knew that look, almost everyone was standing like this on the balcony and was looking down at the ground, 5 floor below. Almost everyone got through a wish to settle all problems with one jump. Thatās why when new patients come to the hospital, especially when they are nervous patients, the balcony gets locked. This time someone lost the track and Katya, who was screaming 3 days ago that she would jump out, was on the balcony.
- Katya, come here! Why are standing there? Thereās nothing interesting there, come here!
- No, leave me alone. I donāt wanna live! My baby, my Valya, sheās just 2.5 years old! Why??? Why live? My daughter has cancer! She will die! I donāt wanna see this! I donāt want to and I canāt!!! ā she bent over the railings even more.
- My son has cancer too, so what? ā Lena couldnāt be endearing too long - Yes, a lot of people die here, but some survive! But they survive only when they get treatment! If you treat your daughter, maybe she gets lucky as the boy from room 5! Heās been having remissions for 4 years. You could have the same!
- No, no!!! How can you give a baby chemo, she feels so bad because of it! How can you live in the place where kids die? Iād better die right here and right now! ā she made a step forwardā¦
- Mom, mom, come here ā Valya was walking down the hall. She had hair and no typical cheeks yetā¦
- Wanna jump? Go ahead! But take your daughter! She will not survive without your help! Who will be buying her drugs? Your husband is an alcoholic? Who will be watching her during IV? Nurses? Donāt make me laugh!!! Here. Take her and jump together! ā Lena grabbed Valya who couldnāt understand what was going on and gave her to Katya.
- No, no, stop! How can youā¦ - Katyaās eyes widened from horror.
- How can you? You are so selfish! Think about your baby! Think about what happens to her after you jump! Come on, go! But then Valya dies in couple of weeks! Yes, she wonāt have the painful treatment, because the hospital doesnāt have any drugs! But she will have a painful death from leucosis. Come on, take her and jump! What? Scary? You both will be better this way! Come on! Come on!!!
Katya rushed from the balcony into the hall, and ran crying somewhere outside the hospital.
- Lena, you think she wonāt do anything stupid there?
- Maybe she will, but not today. This psychotherapy will be enough for today, and thenā¦ Let me just find that person who didnāt lock the balcony and Iāll drop him from there. Or next time make him ānegotiateā.
Lena was also was taken from the balcony. By a woman whose kid was in ER center. He died 2 days later. But Lena was always saying that that woman saved her Volodya, although she left her own one.
Hope dies lastā¦
Raisa Gorbacheva is diagnosed with leucosis. Everyone in our hospital knew that. And everyone was following the chain of events. Older kids sighed "She has money to be treated in Germany, we donātā¦". But every night we would gather by the TV and wait for the news about her recovery. But there wasnāt much information, and it wasnāt that optimistic, as we wanted to be. We collected separate phrases and formulations and formed an impression about what was going on. And there wasnāt anything goodā¦ Every day the news were shorterā¦ itās hard to describeā¦ were kind of awkward. The one thatās present in the hospital after someone dies. When all adults know whatās going on, but pretend, that everything is fine, drop their eyes down and change the subject.
The same was on TV. We knew what happened. We knew that even money and German hospital was helpless in the face of leucosis. Our parents knew that too. More often they were trying to persuade us to watch cartoons. And kids were arguing out load and demanded news. All children, from the youngest to the oldest were sitting in front of the TV set and waitingā¦ waiting for the miracleā¦ Waiting in spite of all factsā¦ we hopedā¦ Raisa Gorbachevaās recovery meant rescue for all of usā¦ and her deathā¦ then we couldnāt even imagine that money and Germany wouldnāt be able to save herā¦
Our moms were listening to the radio hiding from us. And at night the even harder were trying to persuade us to watch cartons. I remember I was sitting in front of TV, and a boy who was sitting next to me crossed the fingers so hard so they turned white. He also dreamed that a woman in another country would get better. And she, the wife of the first president of USSR. Couldnāt even imagine how many kids in CIS were crossing fingers for her. She didnāt know how all those children believed in her.
And once our parents didnāt let us turn on the news. Fighting, tears, but they refused. We knew what happened. A dead silence fell on the hospital. But at night, when someone felt bad, and all adults were helping, someone took the radio out of the nightstand and 15 kids of different ages pressed their ears against it. We knew what we would hear, we just knew. But our hearts could not accept that, we were still hoping for the miracle. We hoped that our parents misinterpreted something, we didnāt understand something. We hoped that we would hear that the battle was still going. Butā¦ that night we all went to bed crying. Our hopes were destroyed. In one day. And there was offence for our destiny that gave us this disease, for doctors who canāt cure this disease and for Raisa Gorbacheva who betrayed us with her death. That night we were all sure that we were doomedā¦ we didnāt believe in the recoveryā¦ but somewhere deep inside of us there was hopeā¦ for many of us that hope dies lastā¦ after us.
Irina Gavrisheva, Zaporzhye, Ukraine e-mail:hematologia[at]mail.ru
2006
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