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Hematology and oncology ward in Zaporozhye's regional children's hospital, 2006
In 1997, my life divided into “before” and “after”. Maybe if you look from outside you would not notice anything significant about that – 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 destiny… I don’t 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. It’s here, on the earth, in the usual children’s 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 couldn’t even imagine what that was. I could barely combine two concepts – children and cancer. It seemed that someone made a mistake explaining that children with blood cancer live here. It just couldn’t 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 “death” so normally, like we would say “breakfast”. 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 “I’d rather die, than do chemo again”, others cheerfully touching their bald heads were making jokes that they would be saving a lot on shampoo.
And also eyes… Eyes impressed me the most. They were… I can’t even describe it… they were reflecting absolutely adult emotions. When a new patient was saying some like “I will soon go home” others would look at him with lenience and irony. You could read in their eyes: "You don’t understand anything in this life". Sometime you could see an unbearable pain in these eyes… it would come and go, in flashes, for a couple of seconds, and then the light of life would be on again. It wasn’t just the physical pain, which was very usual for most of the regulars. It was more a mental anguish… memory of the horror that sometimes occupies the hospital and reminds that everyone is mortal, even kids…
I don’t 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 didn’t mean a thing to kids with anemia. I couldn’t understand everything with my mind, but my heart knew, that this was a terrible place, I had to get out… 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 wasn’t 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 boy’s 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 didn’t 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 wasn’t reacting, and I think didn’t 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 – some one was feeling really bad there, they put a white sheet so other children couldn’t see that. Doctors were running in and out of the room, I noticed there was blood on their hands… 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 “c.d.” in it. Everyone in the department knew what it meant, only doctors and parents pretended that kids didn’t 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 didn’t fit the elevator that way). He was wearing a white shirt and shorts. She shirt was white… now it was all red and soaking wet. Blood was everywhere… on his hands, legs… 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 center… I heard someone "this is the end…". 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 there…
In half an hour I heard a chair moving along the hall. I saw them rolling the boy in it. He wasn’t carrying… I think there wasn’t even fear in his eyes. He just couldn’t understand what was going on. ER refused to take him seeing that he’s too sick. Because they had to report every death… For ER this boy dying from bleeding was just a statistical thing. An undesirable thing. They just didn’t take him there saying that he would be better off dying in his room… only our health system could generate these traditions… Painful death from bleeding in the regular department where they couldn’t 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 sheet… Doctors ran into his room again… 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 didn’t 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. That’s why they were just giving him the brine…
I couldn’t hear the boy’s voice. I heard only doctors’ orders to bring this or that. The boy’s 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 wasn’t 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 still… 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 didn’t know what was going on… maybe this was their luck…
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 “deadly white” 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 dying… dying… and all other kids were witnessing this…
I will never forget how all doctors and nurses left the boy’s room accurately moving the sheet aside. All together… a nurse was carrying an IV bag which was half full. I looked at it and everything became cold inside of me… I knew that the boy had died. I just knew this… I looked at the white sheet with his print on it… I was scared that the had dry out yet, and the boy doesn’t exist anymore… he doesn’t’ and he never will… I turned to the wall and cried… I cried for a boy I met 2 days ago for the first time… I didn’t even know his name… I was lying like this when I heard a scream in the hall. That was the boy’s 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 department… she was still screaming… I wanted to scream as well… as loud and terrifying as she was… but I couldn’t… I was just crying…
In couple of minutes they gathered all kids in the hall and took “for a walk” in order to take out the boy’s 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 crying… they were silent and crying…
Some children who were diagnosed “c.d.” sat down separately. These were 10 children of various ages, they sat down close to each other, some put their hands on their neighbors’ shoulders. They were sharing their sorrows… they were trying to come down after a death storm whirled over them… today wasn’t their turn… and tomorrow? Yet this morning many of them believed that they would recover, they would lead normal life again. Now no one though that… even Lesha – a five-year old. He was crying… 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 "Who’s 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 well… 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 I’d rather die here than go back to the hospital, that hell…
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, that’s why we saw a bloody print of a child, who didn’t exist anymore… This gave us shivers. But this wasn’t 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 there… and he’s fine. This total pretence made it even more unbearable. It seemed that only kids mourn for the boy, and adults just didn’t care. Doctors put on smiles, parents got busy with usual stuff. It seemed that adults live in one world, and we, kids – 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 crying… everyone saw that, but no adult came up to me and asked what happened… 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 can’t get used to this!!! You can’t live with this!!!
I had only one wish – run from this terrifying place. Run without knowing where but as far as possible. I couldn’t stay here longer. I was going mad… I’ve got to leave, leave, leave – 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 book… this should be enough… I put all my things into the bag, put on all warm clothes that I had and silently left the hospital… I was walking under the rain in slippers, in thin sports trousers. It wasn’t raining heavily, but the clothes got wet really quickly. I walked passed two tram stations on foot, I didn’t 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 wet… I was freezing… 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 was’t dressed appropriately… no one paid any attention at my tears… no one cared… the same as there… in hematology department…
I didn’t explain anything at home. I cried and kept silence… 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 wasn’t saying anything, but I knew she was asking herself – why did I leave? And for the first time I found strength to say this… "Mom, people die there! I’m afraid I will die too!". No, it was too scary to say this out loud. I stopped again and was just crying…
Next day my parents did not take me back to hematology department… and for a long time from then I was answering all questions with silent tears… Tears of sorrow for the boy I had seen for 2 days, but who completely changed my life forever… His name was Sasha… But I found it out later …
Sick children in Zaporozhye's oncology ward. March 2007
- Natasha, do people often die here? – 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 couldn’t be performed in Ukraine then…
- Look here! – Natasha took a thick phonebook out of the bedside table. It was pretty torn. – 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 lot… But the first page contained only addresses that were crossed out, and the second one, and the third…
- This… - I couldn’t continue…
- Yes, these are the people who died. – Natasha took the phonebook and glanced it through. I noticed that most of the records were crossed out.
- How can you live with this? – 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! – Natasha tapped her finger on one record… the only address that wasn’t crossed on first 6 pages. – This boy lived through two relapses of leucosis, but he’s fine for three years now, he goes to school, he’s happy with his life. I live because I believe that I will be that lucky as this boy or some other ones – she quickly turned over several pages and showed some addresses that were not crossed over either.
- But these are individuals, the other ones die!!! – before this talk I couldn’t even imagine the extent of the tragedy.
- If it wasn’t for these individuals, it wouldn’t 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 …
Natasha’s address was crossed out of my phonebook exactly 2 months after that conversation…
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 – said a woman looking down.
- It’s 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 windowsill…
- Where is Anton? We’ll be doing IV now – a nurse entered a room – where is the IV kit?
- Luda, I don’t have it… I don’t have any money to buy the kit… Look… - a woman took a purse from under the pillow and opened it. There was a picture of Anton where he’s 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 time… 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.
- I’m sorry. If you don’t have a kit, then we won’t be doing IV – 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 wasn’t any money even for medicine… 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 nickel… Nadya was holding a coin and thinking: "My son’s life is worth thousands of hryvnas, but I can only pay a nickel …"
- Mom, what’s there you have? – Anton was peeping through a slightly open door.
- Money – Nadya said ironically smiling. How could you call this coin money?
- Could you give that? – 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! – Nadya sounded doubtful… What if she finds at least a hryvna and she would lack this very nickel to buy an IV kit …
- Mom, what can I buy for a nickel?
- A box of matches – answered Nadya smiling. And when Anton left a room she continued – so I can set this building on fire and solve the problem one and for all. What’s the use from this hospital if I and dozens of other mothers have only this miserable nickel…?
It was really late at night… I opened my eyes… 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 wasn’t 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 – another woman was sitting next to her dying child. She’s sitting like this for many nights in a row, like my mother. Not only at nights, but during the day too. She doesn’t eat, doesn’t sleep… she just sits there and not taking her eyes of her son…
It was hard o breath… I couldn’t turn in the bed. Because of the constant lying in one pose my body went numb and I couldn’t sleep. My mom was napping in the chair next to me. It’s 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. That’s why I was just lying silently…
I was looking at the streak of light from the other room and trying not to think of what happened a week ago…
They carried me into the hospital, but on my way to a hospital room I saw Tanya. "Vova is alive, alive! Hurrah!!!" – I knew that if my friend’s mother is still here, it means he’s still here, he’s alive. In spite of all… 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 can’t come.
- OK, then I’ll go to see him, can I? – Tanya looked at my mom, then at me… there was something frightening in her eyes …
- Ira, I don’t think you should see this. You don’t understand. He really feels bad.
- Well, if you he can’t be disturbed, then…
- No, I don’t think it’s possible to disturb him now… - Tanya’s 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 couldn’t even sit down by myself… When my mom came back I saw that she was crying. "You really shouldn’t see this!" – that’s 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 I’d be able to talk to him. I persuaded my mom to take me to Vova…
My friend’s 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 didn’t look at me…
- Hi, Vova! How are you – 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 didn’t respond – Tanya quickly wiped off tears – Vova, look, Ira came to see you. Look at her!
But Vova didn’t react. I was looking at him with horror. Is it what’s 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, I’ll finish puking and come". He’s always so cheerful and amusing… 4 years of fight with eye-socket sarcoma without any results. Surgery after surgery, but tumor was getting bigger. He’s going through radiation treatment, but it’s 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 didn’t have for 4 years. But everything I dreamed of was utopia… the tumor grew into the brain, Vova went into coma. His death was just the matter of time. It was not possible to accept that…
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 couldn’t hear any words. "Vova, everything is OK! See, I’m still here! I brought some games, get better, we’ll play together…". 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 anymore…
A week passed from then. Vova did not regain consciousness, I was the last one he somehow reacted to… He was dying… I was dying too… Not being able to sit down myself I listening very hard to what was going on in Vova’s room. I still believed he could beat the death. It just couldn’t 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 children… 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 confidence…
- Vova, don’t go there, they are all dead, and you are still alive!
- Ira, I was told to come here, that this is my place. Look – he gave a piece of paper – It says here that this is my classroom.
- Then wait, I’ll go with you!
- Show me your pass – I gave him a piece of paper.
- No, this is not a place for you! You should go further! – Vova gave me back my paper.
- But why? I want to go with you, I don’t know what’s there, I’d better stay here with you – I don’t know why but I started crying.
- No, Ira… it’s up to us to decide where to go … - Vova smiled, waived and entered the room …
I woke up… Something is going to happen, I knew this… From the very morning something was up with Vova… I saw nurses run into his room with oxygen bags… I saw bottle droppers that nurses were bringing into his room… and I… It was hard to breathe… harder and harder… I fainted after lunch…
When I opened my eyes, I saw a man bending towards me, he looked very anxious. I waned to ask what happened, but I couldn’t 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. I’m 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 “ER” on man’s 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 happened… I physically felt it. Emergency doctors left, and I heard them saying in the hall "she almost died…".
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 "How’s Vova?". In response my mom just shook her head and began to cry. She didn’t have to say anything else, I knew everything now. I couldn’t cry… I didn’t have any strength for that. I asked: "When?". Mom looked guilty when she said: "You both felt bad almost at the same time. Vova – about 30 seconds earlier. Doctors called ER for him, but when they came, you were not breathing. Doctors decided to save you…" – my mom couldn’t say anything else, she was sobbing. I clearly recalled my dream and that room, the one I wanted to follow Vova to, but he didn’t let me… "it’s not up to us to decide where to go"… these words clearly reflected what had happened. It wasn’t up to me or Vova to decide who would be living, ER staff made that choice. I survived… 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 “written off”, they didn’t 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 Vova’s life to save mine???
Later on I would find out that it’s not the fist time (and I’m afraid not the last one) when ER staff had to choose who to save… it’s like in the war zone… 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 me…
… all for one
Sveta’s scream scattered evening silence "Guys, Dima’s not feeling well". In 20 seconds, moms of all children ran into the hall. They were running into Dima’s room to help with whatever they can. They left their sick children to help someone else’s. This was the local law – all for one! Children were divided into own and strangers. Children were common, and their problems were common too, that’s why had to be solved together.
Sick children, many of them were doing chemo that night, left alone. The ones who were “in charge” 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 couldn’t even turn by myself in bed. Anton took playing cards out of the nightstand, moved the IV pole (which held two IV systems – mine and his) and sat down next to me to his favorite game – drunk man. It was 10 pm and we both knew that we wouldn’t 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.
Dima’s 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 – for 7-8 minutes. That’s 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 back… Of course, you could take the elevator, but it’s so slow, you have to move fast, faster, more faster… you do this dozens of times… Nadya, Anton’s 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. "Don’t worry, mom, we are fine. When the bottle gets empty I’ll go to get Natasha " – Anton said reading her thoughts. Nadya looks at the watch and understand that she’s behind the schedule. If she doesn’t make up for this minute, Dima could stay without oxygen. She’s running towards the stairs… She has only one thought – to be there on time, not to let down, to do everything to save another child.
Three other moms are in Dima’s 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 there’s 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 people… women, exhausted from sleepless nights, they forget to take a meal and it’s been long time since they ate meat. But now they are not even thinking about this… they know only one thing – they have to save Dima. No, they don’t have to… it’s 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 can’t 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 can’t call anyone else, because we are “chained up”. There is not enough poles in the hospital, that’s 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. That’s 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 can’t 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. It’s her turn to warm up the plasma. Not wasting a second she gets down to business. "Hold this" – and now I’m holding an icy cold bottle of plasma. The faster it’s melting, the more chances Dima has. That’s why it can’t be left without warming up, that’s why while mom is changing bottles, I’m warming up the precious bottle of plasma.
My mom changed the bottles and left. And we are together with Anton again. A funny couple – I’m 14, he’s 5. But age doesn’t 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 children… Only 2 nights ago everyone was helping Anton, who down with a high fever. Dima’s 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 Anton’s mother will run to get oxygen for me. It’s been long time since we were dividing each other depending on age, wealth and moms. This just doesn’t matter. The only thing that matters is that we are all living on the edge and everyone’s 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. I’m freezing, but I can’t reach to get the blanket. I ask Anton. He covers me with the blanket, adjusting it on the chest and legs. He knows I can’t do it myself. My mom walks into the room: "Guys, we need one more bottle of plasma, can you warm it up?". She didn’t even had to ask about it, it just can’t be otherwise. It’s midnight, but Anton and I warming up a bottle of plasma. We don’t take as a duty. We don’t care if we have to warm up this bottle for Dima or ourselves. We don’t even think of getting irritated that our parents don’t put us to bed. Our sleep doesn’t matter when Dima’s life is at stake…
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 mom’s hands were white from cold. Anton’s and mine hands were also cold. But Dima was alive… they were chances to believe that he would live till the morning. And all our inconveniences didn’t 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 didn’t have any doubts in it, because the main law here is all for one!
Set the soul free…
A white sheet is attached to the room door. It’s really late at night, but the light is on. Woman’s silhouette can be seen through the sheet, she’s sitting at the bed. She’s sitting still, sometimes her head drops on the chest – 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 shouldn’t sleep, I shouldn’t!" – she’s saying these words again and again. She’s sitting by her daughter’s bed. Her daughter is fatally sick. A girl is pale and exhausted. She can’t swallow for 2 weeks. Respiratory failure is building up with every hour. A child is dying from asphyxia.
An doctors… decided that the tumor was inoperable. And all they could offer was a deadly portion of hypnotic medication “to the soul free”. A doctor called a simple way out to save Natasha and her daughter from suffering. Natasha refused. She didn’t 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 didn’t 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 couldn’t do it, that’s 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 didn’t her eyes off her hardly moving chest. And then the real hell began – the girl sighed painfully and… and began turning blue. The breath stopped… Her mother was looking at her blue face with horror. She knew what to do – she jumped off the chair and started to do an artificial ventilation. She didn’t ask anyone for help, she knew that it was useless – department chief doctor prohibited all active interference related to life support. In developed countries it’s called “passive euthanasia” and considered illegal, but in our country they carefully called it “to set the soul free”. Natasha was breathing air in again and again. Even now she believed that it’s worth trying. In 10 minute the girl took a couple of breaths. But in half an hour she wasn’t breathing again. And here goes “mouth-to-mouth” again, till she gets dizzy and nauseous. And there is only one thought – not to fall down, not to faint, because her daughter desperately needs this air, the one she can’t 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, don’t breathe… let me die… I can’t live like this" – you could hardly hear the girl’s 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 lips… till they were bleeding… not feeling any pain. She was sitting, her eyes were closed, and suddenly she stood up. She looked confident… 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 wasn’t looking at the watch, wasn’t thinking what the damage to the brain would be after a cardiac arrest. She had only one thing in mind – she had to save her daughter. And making the next “breath” she put her hand on girl’s 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 didn’t know that it wasn’t her blood, but her mother’s when she was biting her lips watching her daughter die. The girl knew only one thing – 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 didn’t believe this night taken off from death means something.
But her mother… as if she knew what for she fought the death. As if she knew that 7 years would pass and I would tell her “thank you” that she didn’t 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 still… it’s 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 won’t let my soul free…
Mothers... March 2007.
Climbing the wall…
"Again, why again!!!" – everyone in the hall heard Sveta screaming. My mom just took me to the hall to watch TV, but we didn’t make to the TV set, we heard the scream. I saw Sveta standing by her room and climbing the wall… literally… She was scratching her fingers to they bled, bloody stripes were left on the wall… But Sveta was still grasping the wall, trying to climb it. Where? Why? I didn’t know, she didn’t know. Dima was screaming from the room "Mom, please, don’t, mom…". Sometimes this scream was being interrupted by crying. And sometimes – by coughing. My mom left me in the hall and ran to Dima’s room. I heard her calming him down, and he was screaming "What’s 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 can’t, I can’t!!!". 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 Dima’s crying. I wanted to escape this hell. But I had to watch this. Some other kids had to watch it too… and there was no medical staff around… 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 too… because of their weakness, offence and fear. My mom rushed out of Dima’s room. Her hands were covered in blood. "Sveta, where are the drugs?" – 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 son’s nose was bleeding again, and she only had 4 platelets. It means they won’t 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 breathing… She just didn’t 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 didn’t think to turn me so I couldn’t see this. And I didn’t have any moral rights to ask anybody else…
In spite of Sveta’s 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 again… and we all saw and heard this. And we, kids, were terrified what our disease does to our mothers. And also there was shame… 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!" – each child thought that…
Sveta began napping, someone took her to my room. Someone stayed there to look after her so she doesn’t 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 money… I saw someone else take a purse… someone slipped on a coat and rushed to the drugstore. My mom was sitting by Dima’s 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 didn’t sleep for the whole night, then another mom took over, someone else started to take care of Sveta. For 3 days she couldn’t 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 me…?". And when finally she was allowed into the room, Dima looked at her and said: "You do this again, I’ll jump out of this window!!!". And began to cry… 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 her…
I want to live!!! Daniil, March 2007
"Guys, mother f…, who left the balcony open???" – 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. That’s 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. That’s 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? There’s nothing interesting there, come here!
- No, leave me alone. I don’t wanna live! My baby, my Valya, she’s just 2.5 years old! Why??? Why live? My daughter has cancer! She will die! I don’t wanna see this! I don’t want to and I can’t!!! – she bent over the railings even more.
- My son has cancer too, so what? – Lena couldn’t 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! He’s 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? I’d better die right here and right now! – she made a step forward…
- Mom, mom, come here – Valya was walking down the hall. She had hair and no typical cheeks yet…
- 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? Don’t make me laugh!!! Here. Take her and jump together! – Lena grabbed Valya who couldn’t understand what was going on and gave her to Katya.
- No, no, stop! How can you… - Katya’s 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 won’t have the painful treatment, because the hospital doesn’t 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 won’t do anything stupid there?
- Maybe she will, but not today. This psychotherapy will be enough for today, and then… Let me just find that person who didn’t lock the balcony and I’ll drop him from there. Or next time make him “negotiate”.
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 last…
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 don’t…". But every night we would gather by the TV and wait for the news about her recovery. But there wasn’t much information, and it wasn’t that optimistic, as we wanted to be. We collected separate phrases and formulations and formed an impression about what was going on. And there wasn’t anything good… Every day the news were shorter… it’s hard to describe… were kind of awkward. The one that’s present in the hospital after someone dies. When all adults know what’s 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 waiting… waiting for the miracle… Waiting in spite of all facts… we hoped… Raisa Gorbacheva’s recovery meant rescue for all of us… and her death… then we couldn’t even imagine that money and Germany wouldn’t be able to save her…
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. Couldn’t even imagine how many kids in CIS were crossing fingers for her. She didn’t know how all those children believed in her.
And once our parents didn’t 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 didn’t understand something. We hoped that we would hear that the battle was still going. But… 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 can’t cure this disease and for Raisa Gorbacheva who betrayed us with her death. That night we were all sure that we were doomed… we didn’t believe in the recovery… but somewhere deep inside of us there was hope… for many of us that hope dies last… after us.
Irina Gavrisheva, Zaporzhye, Ukraine e-mail:hematologia[at]mail.ru
This publication related with such categories:
Haemoltology and oncology department (ward), Zaporozhye, Ukraine Regional Zaporozhye Children Hospital