En Pointe

by Chloe Bayliss

  I’m inundated with friends and family rushing to my side. My grandparents on my dad’s side return from the middle of their holiday to be with me, and Demi and Katy check up on me constantly with text messages. Everyone rallies around me and showers me with well wishes, gifts and flowers. One of the dance mums even gives me some little Guatemalan worry dolls that I can tell my worries to at night-time.

  Mum goes and buys the exact same dolls for Phoebe. Perhaps she thinks I might not return home to my sister anytime soon.

  I have only been in hospital for two days and I already miss home. I would do anything to hear my alarm go off at 5.30 am and get up to practise in my studio again.

  * * *

  I sit up in my hospital bed. One of my dance teachers, Miss Heidi, has just entered the room. ‘How are you doing, my girl?’ she says.

  I know why she is here. She’s the choreographer of the trio I so desperately want to perform in for Staged 08 in three days’ time. She’s checking in to see if I’ll be well enough by Saturday.

  ‘Have you heard anything from the doctors?’ she asks, and I shake my head. She takes my hand as she sits. The lamp beside me casts a shadow on one side of her face. It’s dark. ‘Honey, I don’t want to, but I’m going to have to start teaching someone else the choreography if you aren’t well enough to perform,’ she says.

  My chest starts to swell with emotion as for the first time I realise I might not actually make it out of this god-awful place in time for the performance. ‘No,’ I say. ‘Just wait. Please, just wait for me. I’m going to get out, I am. I still have a couple of days to get better. I can do it.’

  Miss Heidi stands and gives me a kiss on my forehead. ‘Okay, my gorgeous girl. Just rest. I don’t want you worrying about anything,’ she says as she leaves.

  But my heart is sinking like the tiniest pebble in the biggest ocean. Somehow, I don’t think she is going to wait for me. Putting my hands together, I say a silent prayer: Please, get me out of here before Staged 08.

  * * *

  The next day, I still feel nauseated and can’t eat without throwing everything up. As I’m cleaning the blood from my upper lip after yet another nosebleed, my mum and a tall, dark man come in and stand at my bedside.

  ‘Hello, Chloe. I am Dr Reid.’ The man’s voice is gentle and soothing, but I’m getting mixed signals—Mum is standing at the end of the bed next to him, frozen. She knows something I don’t. Dr Reid continues speaking. ‘We’ve been taking a close look at your bloods and we believe you have a disease called thrombotic thrombocytopenic purpura and hemolytic uremic syndrome—TTP/HUS. It’s a very rare blood disease that about four in a million people get. Your blood is doing funny things and we need to get to the bottom of what’s causing the TTP/HUS.’

  This information is too much for me to absorb—I feel like I’m on the TV show House or something. Surely now they know what it is, they can just treat it and I can get out of here.

  He continues talking, but I can’t focus on the meaning of his words as they wash over me. ‘Your blood cells are getting small clots in them, but your platelets are also being destroyed. Platelets are what help clot a site when you bleed.’ He uses his hands to demonstrate clotting, putting one hand on top of the other to represent platelets closing off a wound. ‘But if you were to cut yourself now, your body wouldn’t be able to clot properly and you would continue to bleed because your platelet count is dangerously low.’

  My mum hasn’t moved from her spot. She’s like a statue, seriously concentrating on what the doctor is saying. He goes on to tell me that the TTP could be the cause of my out-of-character behaviour and that the headaches, bruises and small red dots on my body are all a sign of the disease. Apparently, the HUS part can be caused from food contamination. ‘You are seriously anaemic and because your blood pressure is so high for a girl of your age, combined with the blood disease this has caused severe damage to your kidneys.’

  It’s then that everything starts to speed up.

  ‘Chloe, you have acute kidney failure and we need to act very quickly, okay?’ Dr Reid says.

  ‘I… What?’ I manage to spit out. My organs are shutting down? Everything is happening too fast. ‘I don’t understand. What does that mean?’ I say frantically.

  ‘It means that right now we have to put a tube into the side of your neck called a vascath to draw blood from so we can start you on dialysis. The dialysis will clean your blood and filter out the fluid and toxins that your body can’t get rid of. We will also filter and spin off your blood plasma into a machine so you can get new donated plasma.’ He explains that I have white blood cells and red blood cells and that the stuff in between is plasma. It’s yellow. I want to ask so many questions but he’s already moving. ‘We have to work quickly. You will be taken into the operating theatre very soon.’

  All I can think about is getting out of here. ‘Doctor, you need to get me out of here before Saturday. I have a very important performance.’

  Mum finally snaps into action and grabs my hand. She is shaking. ‘Darling. Listen to me. You are a very sick girl and I need you to focus on getting better right now. Honey, they need to do this to save your life.’ She’s talking as though I might be about to die or something. ‘Clo, look at me.’ I stare into her eyes—the kindest eyes of anyone I know—knowing but not wanting to hear what she’s about to say. ‘You won’t be able to make Staged 08. Let’s just get you better so you can come back stronger than ever before, okay?’

  Before I can respond, a large man in a green shirt comes in and unclips the breaks on my bed. Mum kisses me goodbye and tells me she will be here when I come out, and I am wheeled away to the operating theatre.

  CHAPTER EIGHT

  Ward J2

  AUGUST 2008

  ‘I can’t breathe! Hey, I can’t breathe!’ A blue cloth is covering my face, suffocating me. I yell for someone to lift it up.

  ‘Sorry, love. Here you go,’ a nurse says as she lifts the blue cloth up a little.

  ‘I need it up further. I can’t breathe, I can’t breathe.’ Panic rises in me, hot and cold. A hand comes into view and lifts the cloth just above my nose and I suck in air.

  I am in a nightmare. Lying sideways on a table, I can hear a bunch of people talking above my head as nurses and a surgeon bend down low, inspecting my neck. I can’t see them, but I can feel their warmth surrounding my head. A hand rests on my throat. ‘Chloe, there is going to be a small sting before we make an incision and insert the vascath, okay?’ The voice is sweet and soothing. It belongs to a woman. ‘Okay, sweetie, here we go.’

  I feel a sharp sting from a needle. Then the numbness from the local anaesthetic stops me feeling the incision, thank goodness. Something pushes hard against my neck. The pressure is uncomfortable as they thread in the catheter tube. It hurts, and I let out a whimper as tears stream down my face. I whimper and whimper, trying to get some air as the cloth falls down once more. ‘You’re doing great, Chloe,’ I hear the woman say. The pressure in my neck is intense, but I think my tears are from shock. A short time ago I was wandering around Brisbane city eating ice cream and preparing for Staged 08. How on earth did I get here? I become numb and my eyes glaze over as they continue to shove things into my neck. Then everything goes dark.

  * * *

  When I wake up a few hours later, I look down towards my right shoulder and see what I’ve become. A monster. A tube with two thinner tubes is poking about ten centimetres out of my neck. It’s painful. My arm trembles as I try to reach up and touch the port but I’m held back by the wires that are attached to me. A wire is connected to my finger, a blood pressure cuff is wrapped around my arm and I am hooked up to an IV line that’s feeding me who knows what.

  ‘Hi, darling.’ It’s Mum. She and my dad are standing in the corner of the room. Dad rushes to my side and holds my hand. ‘How are you feeling?’ he says. His voice is hoarse.

  ‘It hurts,’ I say, tears burning at the backs of my eyes. But I refuse to let the
m see me get upset.

  ‘You’ve been in the wars, Clo. But you’ll be right,’ Dad tells me. He looks pale. I know he doesn’t like hospitals.

  ‘Where’s Fezzy?’ I ask as I try to sit up in bed. Pain zaps through the right side of my neck as Mum reaches out to me.

  ‘Don’t sit up, Clo—you might hurt yourself. Just lie back and rest.’

  I sigh and settle back into the pillows, worn out.

  ‘Zac has taken Phoebe over to his house for the afternoon,’ Mum says. ‘They might come and visit when you have a little bit more strength.’ I understand what she’s really saying. She doesn’t want my little sister to get scared by the alien-like tubes hanging out of my neck. ‘I’ve spoken to Nan. Her and Pop are going to come and stay with us to look after Phoebe and help out while we get you better,’ Mum says.

  I give a small nod. ‘Oh, okay. That’s nice of them to leave Tuncurry. I’d love to see everyone,’ I say, hoping they’ll get the hint that I really want to see Nan, Pop, Zac and Fezzy soon.

  ‘I know, but I think we should stop all your visitors just for now until things settle down.’ Mum sits down beside me.

  I’m about to respond when a now-familiar feeling sears my stomach. ‘Mum, I’m going to be—’ I clutch my mouth just as Mum produces a bucket out of thin air and places it in front of me, just in time to catch my insides. I can’t believe I’m still vomiting. The nurses keep trying to give me all these medications, but I just bring them all back up. How am I supposed to get better if I can’t keep the medicine down?

  Interrupting my post-spew clean up, another man in a green shirt tells me he’s going to take me away from my ward in J2 and up to the dialysis ward for treatment. He unclips my bed once more and wheels me away, Mum and Dad following closely behind.

  * * *

  I lie in the hospital bed that I haven’t gotten out of for three days now. A nurse with spiky blonde hair attaches the tubes in my neck to a cream-coloured machine. She hooks up a bag that’s connected to the machine onto a silver pole beside me. The bag contains a yellowy-gold liquid.

  I point at the machine. ‘What’s that for?’

  ‘This is your plasmapheresis machine. Your blood will be sucked up and out of the port in your neck, then this machine will spin it super-fast until your own blood plasma is separated and drained into a bag. Then this bag of donated plasma will be mixed back in with your blood and returned to your body.’ She says all this while she continues hooking things up.

  Surprisingly, I’m not scared—more fascinated than anything. As the machine starts up, I can actually feel the blood coming up and out of my neck. It’s a weird sensation. During the cycle back in, I can feel all my liquid blood returning to my body. It feels so cold. It’s like my veins are turning to ice, and I shiver all over. Is this supposed to be happening? ‘Nurse, I am really, really cold,’ I say.

  She grabs three or four white hospital blankets and lays them over me to try to warm me up, but even that isn’t enough. I am being frozen from the inside. Suddenly, there’s an itch on my leg. Really itchy, like something has bitten me. The itch rapidly multiplies, spreading across my entire body, like ants are running all over my skin. Chucking off the blankets, I sit up, dragging all the wires I am attached to with me. I scratch and scratch, clawing at my skin to get off whatever is biting me. I call out to the nurse again and she runs over as my hand reaches my face. I can feel welts appearing, and my eyes are closing up until soon they are tiny slits. I must look like someone who’s been punched in the face. I feel sick.

  ‘It’s okay,’ the nurse tells me. ‘You’re just having a reaction to the donated plasma. Sometimes your body can react to the donation even when the plasma is your blood type.’ She pulls out a packet of something from the draw beside her. ‘Take one of these,’ she pops out a chalky-looking tablet from a packet that says Rennie on it and hands it to me, ‘and one of these.’ She then instructs me to swallow a smaller tablet called Phenergan that she tells me will ease the itching and swelling from the hives now covering my body from head to toe. After twenty minutes, I still feel like I want to scratch all my skin off, so they administer more Phenergan through an IV drip. Within minutes it makes me sleepy. Really sleepy. I close my eyes and drift off to sleep. I am finally at peace.

  * * *

  I haven’t been able to go to the bathroom since I arrived here four days ago. During that time, fluid has started to swell my legs, feet, hands and eyes, painfully stretching the skin around my body, as if I’m an over-inflated beachball. I’m attached to yet another machine which is cleaning my blood, and I can already feel my pain easing as it gets rid of the fluid my kidneys can no longer remove themselves. This machine is now my kidneys. The thought makes me feel ill; not ill like I am going to be sick, but in a way that makes me extremely sad that I can’t function now without being strapped to this machine.

  My eyes are only half open when I hear my mother speak. ‘Hey, Clo. How are you feeling? You gave us all a scare back there.’ She was here waiting the whole time I was getting my plasma donation. She’s holding a newspaper, but I know she wouldn’t have read any of it—she wouldn’t be able to calm her mind while she’s so focused on what’s happening with me. ‘Dad’s just gone to get a coffee. Have the welts disappeared from your stomach yet?’

  I turn my head to her. ‘Yeah, I feel much better. How long have I been out for?’

  ‘You’ve been sleeping for almost four hours. Only one more hour to go before you can be unhooked.’

  I give her a nod and close my eyes to rest. ‘Did anything happen while I was sleeping?’ I mumble.

  ‘Well… you missed a bunch of nurses and doctors gathered around your plasma machine taking photos,’ she says, and I open my eyes to look at her.

  ‘What? Why?’

  ‘They were all fascinated by your plasma because it came out the colour of red wine. Clo, it’s supposed to be yellow. You certainly are one of a kind, my girl.’

  I’d roll my eyes, but my head hurts too much. One of a kind. Right now, I’d give anything to be like everyone else if it meant I could dance again.

  ‘I’m sure with a few more treatments your plasma will return back to its normal colour,’ Mum says.

  ‘It will, Mum. I know it will.’ If I don’t stay positive there’s no way I will make it out of here. I feel so tired, as though I could sleep for a hundred years, and I close my eyes, letting the blood drain from me once more.

  * * *

  I start to feel a connection to my body again before I even open my eyes. But I feel different. Sore. I’m sore all over. My muscles are aching. It’s like I have been thrown under a bus. Light creeps beneath my eyelids, forcing them to open. I’m groggy and my head is fuzzy. Something is different. I feel overwhelmed and want to cry, but I stop myself. I just want to go back to sleep.

  ‘Chloe, hi.’ A doctor I have never seen before is in my room. It must be night-time now as moonlight is hitting the window across from me. My parents are next to me, and Dad has his hand on my shoulder. ‘Can you tell me your full name, date of birth and where you are from,’ the doctor asks. I frown at his absurdly stupid questions. Of course I know who I am and where I’m from. I answer his questions, a little alarmed at why my parents and this doctor seem so concerned. The doctor’s chest deflates as he lets out a small breath. It’s relief, I realise. I don’t think he wanted me to see that. He is young. Maybe a junior doctor or something. ‘Good,’ he says. ‘Chloe, you just had a series of seizures and we would like you to have a CT scan to check that everything is in working order.’

  I know what that means. They want to check my brain to make sure it’s not bleeding or doing strange things. I have watched a LOT of House. And I think I’m actually okay with this situation. When I was fourteen, I had a couple of seizures after a bout of illness. At the time they said it was because of a drop in my body temperature because I’d come out of a hot shower. ‘Will the scan hurt?’ I ask.

  The doctor fills out a form
while he speaks. ‘No. You’ll be lying down while a circular machine surrounds your head. It’s quick and painless; you won’t feel a thing. All you have to do is lie very still while we take some pictures of your brain.’

  Yet another man in a green shirt is standing in the doorway, ready to take me away again. Both Dad and Mum kiss my head as I am wheeled out to some other place in the hospital. ‘We’ll be here when you get back,’ they say. I’ve heard that too many times already, and I wish I didn’t have to stress them out so much.

  CHAPTER NINE

  The journal

  AUGUST 2008

  After the CT scan I’m wheeled back to the teen ward in J2. Everyone is asleep, and the ward is quiet. But there’s Mum, still waiting up for me. My mother has stayed with me every night so far in a fold-out bed made up next to mine. She’s terrified there will be an emergency in her absence so she never wants to leave me. I tell her repeatedly that she needs to go home and get some rest. I know she doesn’t get any sleep in the hospital; I hear her tossing and turning, the fold-out bed creaking. But after the scan, I need her more than she probably knows. Deep down I’m scared I will have another seizure. And I feel selfish. I know my little sister still needs her mum, I know my brother wants her support and I know that my dad doesn’t cope well on his own, but I don’t know what else to do. I don’t think I have the courage to make it through the night without her.

  I lie there wondering what’s happened to me. I’ve gone from organising my accommodation to live with another dancer all by ourselves in Washington to a scared little girl who needs her mum next to her all night. I’m thankful that my nan and pop have come to stay at the house to help out, but even with all their support, I still don’t think Dad is sleeping. His eyes are dark and sunken when he visits me each morning.

  Every night I spend in this hospital I go to sleep praying that tomorrow will bring better news so my parents won’t have to worry anymore.