Hannah’s Choice: A daughter's love for life. The mother who let her make the hardest decision of all.

Hannah’s Choice: A daughter's love for life. The mother who let her make the hardest decision of all. Hannah Jones Kirsty Jones The moving and inspirational true story of one little girl's battle against the medical odds and a mother's unwavering love for her daughter.'If I could have any wish it wouldn't be a part in High School Musical. I'd like to live just one day without having to rest when my heart gets tired: I'd just waste my energy, doing stuff with friends. But I can't and feeling unhappy about it is a waste of time. Being happy gives me energy - so much so that sometimes I want to do a cartwheel even though I can't actually manage it. My decision wasn't about dying. It's about living.'When her daughter Hannah was only four years old, Kirsty Jones received the news that no mother ever wants to hear. Her little girl had leukaemia. But Kirsty knew that Hannah was a fighter, and after gruelling chemotheraphy she beat the disease. But there was more trauma to come: the chemotherapy drugs had damaged Hannah's heart.At first, doctors hoped that Hannah's body would compensate for the damaged muscle, but when Hannah was only twelve her heart failed without warning. As her life hung in the balance, Doctors advised that Hannah's only chance of survival was a heart transplant, but the operation was very risky and the anti-rejection drugs might bring back the leukaemia.Kirsty knew one thing: Hannah deserved to decide her own destiny. Wise beyond her years after learning to cope with so much, Hannah made her choice: she did not want the transplant. She'd had enough of hospitals and wanted to be at home with her family.Then in July 2009, the right side of Hannah’s heart completely stopped working and her kidneys started to fail. Days later Hannah celebrated her 14th birthday – a milestone she was never expected to reach – and Hannah was ready to make a different choice. She agreed to have the transplant.Now Kirsty and Hannah tell their unique story and, with wit and honesty, their interweaving voices describe how facing and overcoming death has taught them so much about living. Filled with wisdom and grace, tears and laughter, Hannah's Choice is about beating the odds and finding joy in each day. Hannah’s Choice A daughter’s love for life. The mother who let her make the hardest decision of all. Hannah & Kirsty Jones To all the staff on the paediatric ward at Hereford County Hospital Table of Contents Cover Page (#u92a92b31-90c2-54f3-84bf-48f5743e34c8) Title Page (#u18a4caeb-d795-5617-8544-4c73febf5c7b) Dedication (#u3ff5ecd4-de59-5350-9edc-61714395f5b2) CHAPTER ONE Seize the Moment (#ue599731d-61c6-5fcc-88fb-dfac1dd84138) CHAPTER TWO Precious Time (#u27efe17c-15ae-5494-88dc-a023c2f84782) CHAPTER THREE Not Ours to Keep (#u4686baea-fb70-55d8-b4f9-7536a17b2c8b) CHAPTER FOUR Look for the Love (#litres_trial_promo) CHAPTER FIVE Magic in the Air (#litres_trial_promo) CHAPTER SIX Live the Life You Love (#litres_trial_promo) CHAPTER SEVEN Everyone is Equal (#litres_trial_promo) CHAPTER EIGHT The Right to Choose (#litres_trial_promo) CHAPTER NINE Face Your Fears (#litres_trial_promo) CHAPTER TEN Know Your Strength (#litres_trial_promo) CHAPTER ELEVEN The Gift of Life (#litres_trial_promo) CHAPTER TWELVE A New Beginning (#litres_trial_promo) Acknowledgements (#litres_trial_promo) Copyright (#litres_trial_promo) About the Publisher (#litres_trial_promo) CHAPTER ONE Seize the Moment (#ulink_7613ed54-a0f8-51e7-a4b6-dfc2ac99cfe5) Hannah So what are the really important things you need to know about me? Well, first there’s the fact that if I ever have a boyfriend I want him to look like Zac Efron. At the moment, though, I don’t want a boyfriend. My friend Simone has one called Tiago and we’ve nicknamed them Barbie and Ken. But I’m not interested because I don’t want anyone tagging onto me. I’ve got more important things to do. Simone is one of my school friends and the others are Laura, Becky, Kelcea, Brigitta and Zoe. They’re all nutters and we’re always in touch, even though I don’t see them much because at the moment I’m not well enough to go to school a lot of the time. When I’m at home, though, they message me to find out how I am or to tell me what’s happening because there’s usually something going on – like when two of them once stopped speaking and I just wanted to bang their heads together. But I had to wait until I got back to school and by then they’d made up again. Mostly, though, we all get on really well and do girly stuff like trying out makeup on each other or having sleepovers. Once I stayed up until 11 p.m. on a school night and felt like a zombie the next day. Then there’s my family. First off is my dad Andrew, who’s forty-three and really big and round so you get better cuddles. Mostly he smiles and is always winding me up by making jokes. But sometimes he blows his top when he gets angry and shouts the house down so we have to leave him alone until Mum speaks to him and puts him on the right path again. That doesn’t happen often, though, because he’s usually in a good mood. He’s a really nice dad. My mum Kirsty is forty-two. Small with long red hair, she has twinkly eyes and loves horses almost as much as she loves my brother, sisters and I. She’s a really good mum and on the days I’m feeling well we’ll do things like bake cakes and biscuits. But if I’m feeling tired we’ll stay quiet and she’ll sometimes even go to the shop to get me juice and magazines. The best thing she did recently, though, was deciding to have a week when we didn’t answer the phone. Our house can get really busy sometimes and I just wanted it all to slow down because I felt so tired. That was when Mum took the phone off the hook and I really enjoyed it. Then there are my younger brother and sisters. First comes Oli, who’s twelve and will hit you if he’s in a bad mood. But if he’s in a good one he’ll help you get past the really hard levels on your Nintendo DS – sitting there for ages working out how to get past obstacles or putting in cheat codes if he can’t – which I really like. Mostly Oli is quiet and shy but he’s chatty with me when he wants to be. Next comes Lucy, who’s ten. She’s outgoing, always wants to beat everyone to be the best and is almost as horse-mad as Mum. In fact she’s so good at show jumping that she’s hoping to go to the Olympics some day. She goes away a lot because she competes in shows at weekends and I miss her because I can’t go. There’s no heating in the horse trailer and I’d get too cold if I did, which isn’t good when your heart is bad. But when Lucy is at home we talk about horses all the time – sitting and looking at pony magazines and deciding which ones we’d buy if we had loads of money – and I love it when I do get to go to shows with her because we eat loads of burgers. I’ve tried riding myself but I’m scared of heights and have a weak ankle which isn’t a good combination to have on a horse. Finally there’s Phoebe, who’s four and wild. Mum sometimes says she could swear she was given the wrong baby at hospital because Phoebe will run round the house again and again and never get tired. She goes at fifty miles an hour – banging the lounge doors so you know where she is – which is amazing because when she was born she weighed less than two bags of sugar and now you couldn’t miss her. Phoebe also loves riding, but while most girls her age have a leading rein she doesn’t have one because she’s so brave. She’ll always put up a good fight with me but she’s kind too and will share her chocolates or give me a one pence piece which she thinks is a lot of money. Then there are our animals, and there are lots of those. We’ve got a dog called Ted, a cat called Tails McFluff, some goldfish (although Tails ate some of them once) and ponies called Roxie, Buddy and Mr Minty for Mum, Lucy and Phoebe to ride. We also have chickens for eggs but aren’t allowed to play with them because we put one on the trampoline in the garden once and laughed as it bounced up before flying away. Mum really told us off so we knew we couldn’t do that again. Then there’s me. I’m thirteen and I don’t spend nearly so much time running around as Oli, Lucy and Phoebe because I’ve got a bad heart and get tired easily. That’s why I only go to hospital school in the mornings and then come home at lunchtime to rest. I also spend a lot of time in bed because I pick up any little infection going like colds or stomach upsets which can get really boring because when I feel really ill my energy goes and all I can do is lie quietly. But when I get well I get busy again, although I call it ‘lazy busy’ because I can’t run around or climb trees. Instead I do stuff like reading, going on my laptop, watching TV or playing DS in my bedroom. I’m lucky because it’s my favourite place in the world, all pink with a four-poster bed, and my room at Acorns, where I go once a month, is cool too. Acorns is a place where children who are really ill can have a rest. The films I like are Enchanted and High School Musical even though I know it’s not cool for someone as old as me to enjoy films like that. So I don’t tell my friends, who are all into bands like Evanescence and Paramore, in case they think I’m babyish. But I prefer happy stuff and that’s why I like those films and the music in them. On TV I enjoy Lark Rise to Candleford and detective programmes like Poirot because I try and work out the case before the policeman does. I watch EastEnders sometimes too, even though Mum doesn’t really like me to, but not that often because the people in Albert Square are always having massive fights so it can get a bit predictable. I also like The Apprentice when Sr’Alan tells the contestants where they’re going wrong, and Strictly Come Dancing. I love Anton because he smiles so much, and Brendan, who’s always going off in a major strop. Bruce Forsyth is really old but good and Tess is nice too, although she sometimes wears odd dresses. I prefer Strictly to The X Factor because the people don’t know if they can dance and some of them get really good while others are awful, whereas on The X Factor they know they can sing and just get better. The other thing I watch is Masterchef because it makes me laugh. Like the time when John picked up a piece of black salmon and said, ‘That’s one well-cooked piece of fish.’ What an understatement. But maybe my favourite thing is a game called Boggle. It’s a box full of letters that you jumble up to make words and I love it because it feels like there are lots of them inside me which I can see in the game. That’s why I also enjoy reading because books are full of words you can lose yourself in. One I really like is Enid Blyton’s The Magic Faraway Tree. It’s for younger kids really but it’s great because it tells the story of a group of friends who climb an enchanted tree and find a different land at the top of it each time. So they visit places like the Land of Spells, where they accidentally make a child shrink, the Land of Magic Medicines, where they buy a potion for their mum who’s ill in bed, and the Land of Presents (that one’s obvious). The place I like the sound of best, though, is the Land of Do As You Please where the children get to do whatever they want – like drive a train, ride elephants and swim in the sea. A lot of people think you stop having fun if you get sick, which means you never get to go to the Land of Do As You Please. But I know it’s not like that. Sometimes you have to have fun in a different way, but mostly you have it just like other kids. It’s really important to have fun and I don’t understand the adults who think their life is really bad. You’ve only got one and if you don’t enjoy it then you’ve blown it, haven’t you? That’s why I always try to get to the Land of Do As You Please as often as possible (although it’s much easier with the help of a Nintendo or High School Musical DVD or something). You see, if I could have any wish it wouldn’t be a year in Disneyland (although that would be nice) or a walk-on part in High School Musical (although that would be unreal). What I’d like is to live just one day without having to stop and rest when my heart gets tired: I’d go out and just waste my energy – visit Lucy’s horses, ping all over the place doing stuff with friends, dance to Mamma Mia! But I can’t do that, and I’ve had to learn that feeling unhappy about it is a waste of time. Being happy gives me far more energy – so much so that sometimes I want to do a cartwheel even though I can’t actually manage it. So that’s how I try to feel each and every day, and I think I’ve always been like that. But I can’t really remember that far back, so Mum will have to tell you more about how everything started. Kirsty I don’t know how I knew it was the day on which our world would fall apart. Call it a mother’s intuition, my medical training or just luck, but that day in December 1999 I knew I couldn’t listen to another doctor telling me there was nothing wrong with Hannah. ‘I want a second opinion,’ I said to the young A&E doctor standing in front of me at Worcester Hospital. Hannah was lying on a bed between us. She was pale and listless, so quiet. Not the bubbly, chatty four-year-old I knew so well. It was about 11 p.m. and she’d woken up a couple of hours before, crying and complaining of a tummy ache. The doctor looked at me as exasperation washed across his face. ‘You just need to give her some Calpol,’ he said. ‘I already have,’ I lied. I didn’t want to be dismissed with paracetamol. I wasn’t simply another over-protective mother. Someone had to listen to me. Something was terribly wrong. I knew it. ‘I think you should take her home and see how she is in the morning,’ the doctor replied slowly. ‘You can always see the GP if she’s still not feeling well tomorrow.’ I stared at the man, wanting to fly at him and scream. ‘I want a second opinion,’ I said in a low voice, trying to keep my rage under control. ‘Well, I’m afraid there’s no paediatric consultant on duty tonight. You’ll have to take her to Birmingham or Hereford to be seen.’ ‘In an ambulance?’ ‘No.’ I didn’t have time to argue. Scooping up Hannah in my arms, I ran out of A&E towards the car. Putting her into her seat, I ran around the car, got in and started the engine. Hereford was closer – 45 minutes’ drive away. ‘My tummy hurts, Mummy,’ Hannah moaned. ‘I know, darling, and we’re going to make it better,’ I said softly. Hannah shut her eyes as I started driving. The minutes slid by as I turned over everything again and again. Why wouldn’t the doctor listen to me? Why hadn’t I done something more before now? Hannah hadn’t been well for a few weeks but the GP had told me it was just a virus and I had listened as I told myself she was tired at the end of her first term at school. When she hadn’t perked up, I’d gone back to the GP again and was told the same thing – she had one of those unspecific childhood bugs that every under-five gets and she’d soon shake it off. So when Hannah had refused to eat on a visit to see my great aunt Kitty, I’d told her off. When bruises had appeared on the tops of her feet, I’d explained them away by a bang she’d got when she opened a cupboard door. I told myself I was being over-indulgent – the kind of mother who won’t listen to good medical advice when she’s given it. The kind of mother I didn’t want to be. But what kind of mother was I now? I’d known deep down that something was wrong and hadn’t trusted my own judgement. Now I knew I must. Fear turned inside me as I drove and pressed my accelerator foot closer to the floor. Hedges and trees rushed by in the blackness as we neared Hereford. ‘Nearly there, Han,’ I said in the singsong voice mothers use to calm fear, anger or anything in between. But Hannah did not reply and I turned to glance at her beside me. She looked as if she was sleeping. Reaching across, I grabbed her leg and shook it. ‘Han?’ I said. ‘Han?’ She didn’t open her eyes. I pushed my foot down harder, trying to stave off a rush of panic. Was she breathing? Should I stop to check? No. I didn’t have time. I had to get her to hospital. They could do more for her there than I could. Driving into the entrance of Hereford Hospital, I headed for the children’s ward. I’d done some nursing shifts there before so I knew where it was. It was quicker than trying to find A&E. Hannah was limp in my arms as I pulled her out of the car. Quick, quick. Hurry. Let me in. I hit the doorbell to the unit but nothing happened and I stared around me, ready to start screaming. But suddenly the door opened and I dashed inside. Running along the corridor, I could feel Hannah lying in my arms. My baby. My precious girl. Flying towards the children’s ward, I hit the bell on another door and waited for a voice to crackle out of the intercom. It seemed like for ever until it opened and I ran into a long corridor. ‘I need help,’ I pleaded as I reached the nursing station. ‘Please. My daughter is unconscious.’ Nurses burst into life in front of me and Hannah was taken out of my arms. I followed as she was carried into a room. Very pale, her breathing was fast and shallow as a doctor started examining her. Please, please let her be OK. Make her well again. ‘We’ll need to put a line up,’ the doctor said as the nurses peeled off the top of Hannah’s cream all-in-one sleep suit. I stared in horror at her tiny body. It was covered in tiny red marks – more appearing with each second – livid spots popping under her skin as if an invisible person was pricking her. The doctor pressed a needle into her right arm to take some blood. ‘We’ll send this straight off to the lab,’ he said as he slipped the syringe into a plastic bag. Hannah was still semi-conscious as she was put onto a saline drip. Now all we could do was wait for the blood test results. Time disappeared as I sat by her bed waiting. She looked so tiny – her blonde hair clinging to her head and her breathing still shallow and rapid. Her skin was so pale, it looked almost grey. I wanted to do something. Surely I could? I was her mother, the one person who would always protect her. But even as I tried telling myself this was some everyday, run-of-the-mill illness, I felt the spark of fear which lies inside every mother from the day their first child is born uncurl itself inside me. ‘Mrs Jones?’ a voice said. ‘The doctor wants to speak to you.’ I was taken into a room where the doctor was waiting with a nurse. She walked towards me as if to put her arm around my shoulders but stopped as I stared at her. I knew what this meant. I’d seen it a lot during twelve years of nursing. But I’d always been on the other side before – one of the people waiting to gently break bad news to a stunned relative. I sat down opposite the doctor. ‘We’ve had the results back,’ he said. ‘I’m afraid Hannah is very poorly. Do you have any idea what is wrong with her?’ I looked at him. I’d been going over it in my mind and knew – the bruising, tiredness, loss of appetite. I should have realised before now. ‘I think so,’ I replied. The doctor looked at me. ‘Hannah has tummy ache because she’s bleeding into her stomach and is now beginning to bleed everywhere. We need to work quickly to save her life now.’ I stayed silent as I listened. ‘This is very serious, Mrs Jones,’ the doctor continued softly. ‘Hannah is a very sick little girl. We think she has leukaemia.’ It was quiet on the ward, past midnight, as I opened my eyes and looked at Hannah. A small light above her bed threw soft beams and shadows across it. Standing up, I tucked her yellow knitted blanket around her. We’d brought it from home – something familiar in all that was so new. Turning around, I stared at the plastic chair which I’d earlier folded out flat before wrapping a hospital sheet and blanket around it. This was my bed now, but I knew I wouldn’t be able to switch off as I lay down and heard the hushed sounds of the hospital at night – the clip of nurses’ footsteps, the rumble of trolley wheels and the soft beeps made by machines. I felt as I had in the first few weeks after becoming a mother – too scared to fall properly asleep as I listened to Hannah breathing. Like all new mothers, mine had been a waking sleep all those years ago until I’d learned to trust the fact that she was safe. Now such certainty was gone. Hours after arriving at Hereford, we’d been transferred to Birmingham Children’s Hospital and already the map of our world was unrecognisable. Gone were pre-school and nursery pick-ups, bath times and stories before bed. Instead there were lumbar punctures and central lines, HB levels and platelets. We’d been plunged into our new world during our first meeting with Hannah’s oncology consultant, Dr Williams. Young, smiling and comfortably rounded, he’d told us that she had probable acute myeloid leukaemia – an aggressive and rarer form of the blood cancer. From that moment on there was a flurry of activity, questions and tests. This morning Hannah had gone down to the operating rooms to be anaesthetised for a lumbar puncture to confirm the diagnosis and identify the specific type of leukaemia by drawing spinal fluid to test for cancer cells. A central line had also been inserted – an intravenous catheter which snaked through her chest wall and into her jugular vein ready to deliver chemotherapy drugs straight to her heart. Andrew and I had sat quietly as Mr Williams explained AML to us. In healthy adults and children, bone marrow produces red blood cells to carry oxygen around the body, white blood cells to fight infection and platelets to knit blood together and control bleeding. But in Hannah this system had gone out of control, like a rollercoaster crashing off its tracks into the unknown. Deep within the core of her bones, her marrow was over-producing imperfect cells. It meant that healthy blood was not being made which was why Hannah had started bleeding internally. Without treatment she would certainly die. With it, she stood a chance. For a moment fear had engulfed me as the doctor talked – a bitter, clenching terror that filled my gut. But I’d pushed it down as I listened to every word he said, knowing I must keep myself calm as we prepared to fight for Hannah’s life. Working for many years at the extreme end of nursing – intensive care and cardiac transplant wards, major injuries units and paediatric ICU transfer – had taught me how to do this. In the rush and panic of acute medicine I’d learned to keep still in the eye of a storm. Sick and infirm, young and fit, death was a random enemy which didn’t make allowances as it took lives. But it was only now as it tried to take my own child that I knew what fear really tasted like. It had all felt unreal during those first anxious hours in Hereford Hospital as we waited to be transferred to Birmingham by blue-light ambulance. After the doctor had spoken to me, I’d phoned Andrew and he’d arrived desperate for news, tears wet on his cheeks as both of us tried to take in what was happening. Until then we’d had an ordinary life: Andrew working as an auditor and me doing twenty hours a week as a junior sister on a coronary care unit in Worcester, juggling my shifts around our three children, babysitters and nursery. We lived in a new house on a little estate and went on holiday once a year. It was a busy, run-of-the-mill life until we stepped out of the lift into the long corridor leading through Birmingham’s paediatric oncology unit for the first time and I knew nothing would ever be the same again. Hannah was lying on a stretcher and I looked up to see a little girl walking towards us. She must have been about ten and was stick thin – a pair of shorts hanging from her hips and a white T-shirt dropping in folds around her body, her head completely bald. She looked like a ghost as she pushed a drip stand, and my breath caught as I stared at her. Just the day before I’d been planning for Christmas because it was only a week away. What toys to buy? What food to cook? Did I have enough to fill the children’s stockings? Did I have too much? But now this world had disappeared completely and it had taken just one word to shatter it. Four syllables. Leu-kae-mi-a. As Mr Williams talked us through Hannah’s diagnosis and treatment, he’d shown us a red file containing pages of tiny typed words listing all the different forms of chemotherapy and their side effects. Hannah’s leukaemia would be treated by six rounds of chemo which would last about a month each and all follow the same pattern – after an initial burst of intensive drugs over several days, Hannah would continue on a lighter cocktail of medication for another ten before being given a ‘rest’ of about another ten days to allow her body to recover from the onslaught. It was like a war: a period of intense battle followed by a retreat and regrouping before the fighting began again. All we could do was wait to see if it would be enough to save Hannah’s life. ‘We hope Hannah will quickly go into remission,’ Mr Williams had told us. ‘But even if she does she will have to complete all six chemo courses to give her the best possible chance of long-term remission.’ Andrew and I had listened as Mr Williams warned us of the possible side effects the powerful chemo drugs could trigger because they would attack the healthy fast-growing cells in Hannah’s skin and digestive tract as well as the cancerous ones. The chemo might cause anything from hair loss and nausea to skin changes and tiredness. Hannah’s immune system would be so depleted by the highly toxic drugs that any tiny infection could be serious. There was also the possibility of more extreme side effects like an increased risk of thrombosis or heart damage. But they were remote – the stuff of warnings listed on an aeroplane safety card which you barely glance at as you settle back in your seat. We didn’t have a choice. We had to fight the enemy that was here and now. If Hannah didn’t have the drugs, we would certainly lose her. ‘I don’t feel well, Mummy,’ she’d cried when she’d woken up after Andrew and I had returned to her bedside. ‘My tummy hurts.’ She’d hardly been awake since the night before. Too ill and drowsy to know what was happening. ‘We’re in hospital, darling,’ I said softly as I bent towards her. ‘You’re poorly.’ She stared at me. ‘There are bugs in your blood and the doctors are going to give you special medicines to fight them.’ Hannah looked at Andrew and me, her eyes huge in her white face. ‘Will they taste nice?’ she asked. ‘These are special medicines which you don’t have to swallow,’ I replied. ‘Will they make me better?’ I paused for a moment. I had a choice now: lace the truth with uncertain hopes or speak it gently but honestly on this, my first step into the unknown with my daughter. Hannah had to trust me completely. I couldn’t start lying to her now. ‘We don’t know for sure, but we hope so, Han.’ Andrew and I looked at each other. There was nothing more to say. As soon as Hannah started chemotherapy, it quickly became clear just how much the treatment was going to affect her. The chemotherapy drugs had to be administered day and night through two bags labelled with words like ‘Toxic’ which hung from drip stands beside her. Each ran in turn down the central line into Hannah’s heart, which was washed out with saline whenever the drugs were switched to ensure they did not mix. Within days, she had started passing blood clots or vomiting them up as the skin on her inner digestive tract disintegrated. It is one thing knowing your child must have life-saving treatment but another to watch them have it. The cries of children too young to understand what was happening cut razor-sharp through me and at nights the buzz of the day disappeared and soft sobs filled the silence. But the only time Hannah cried out was when the drips and lines going into her veins caught as they were moved. Otherwise she lay still and her silence was almost worse than screams. It was as if she was too sick to even make a sound, too weak to express her pain in any way, and I wished I could climb inside her mind and know what she was thinking. Time disappeared. I didn’t think of the next chemo cycle, next month or even next week. I knew Oli and Lucy were being looked after at home by Andrew and his parents so I focused completely on Hannah. My days were lived waiting for her latest blood results: white and red blood cell counts, platelet levels and HB ratings. Leucocytes, basophils, eosinophils, creatinine levels…the list of blood cells and other physiological markers was endless. Each morning a blood sample was taken, and after the results came back soon after lunch I’d write down the figures in a pocket-sized book – lines of numbers running like Chinese shupai down the page which told me about the minutest details of my child’s fight with the disease inside her. The tiny figures became my talismen and I’d wait anxiously each day until the small hand hit the number two on my watch face and it was time to walk to the nurses’ station to ask for news. ‘It must be busy in the labs today,’ someone would smile. ‘They’ll be here soon.’ Pushing down my impatience, I’d walk back to Hannah’s bed. But in my desperation for news I wasn’t any different from every other mum on the ward who also pored over the figures when they got them. Did their child have an infection? Was their red blood count coming back up? Or their white count going down? Some couldn’t decipher the list of intricate numbers and asked me to explain after realising I could help. I understood why they wanted to know what the endless figures meant: they were the one piece of fact we could hold onto amid so much uncertainty, and understanding the numbers felt like some small practical way to help our child at a time when there was so little else we could do. Otherwise I spent hours sitting beside Hannah, longing to get onto her bed and lie beside her like other parents did with their children but unable to because she didn’t want to be touched. Hannah’s senses were so heightened that her skin was incredibly sensitive and I found it hard not to physically reassure her. I wanted to cradle her just as I had when she was a baby, feel her weight against me and soothe her. But Hannah did not want to be hugged and she did not cry out for me either. She lay in a cocoon of silence, as if willing herself to live, while I sat within arm’s reach, close enough for her to feel my presence. The hours slipped by with the television on low as she slept and when she woke I would colour in a picture so that she could watch, or read a story for her to listen to. Too ill to eat, Hannah was fed by a high-calorie feed which dripped slowly into her nasogastric tube from another bag on a drip stand beside the bed. Thick and sticky, the feed had to be covered in brown paper to protect it from the sun because light could alter its delicate chemical balance and we quickly got used to this strange kind of nourishment, just as we did the rest of our new life. After that first shocking sight of the little girl walking towards me, it soon became normal to see children with no hair; after a few nights in the chair beside Hannah’s bed I knew other parents in the ward were lying awake just like me and occasionally I could hear their muffled sobs. We smiled at each other during the day and silently accepted each other’s grief by night. Life on the unit wasn’t just about sadness – there was hope and light too. Doctors walked around in white coats splattered with water shot from pistols by the children who were well enough to play, and the nurses, who worked harder than any I’d ever seen, were endlessly cheerful. Christmas also worked its magic on the ward just as surely as it did in any other place filled with children. Decorations were strung across the walls, nurses played carols on the radio and Father Christmas visited the children each day to hand out presents. If Hannah was sleeping when he came, she’d wake to see a Barbie car or a colouring book, a doll or a fairy wand, in the stack of presents which slowly piled up beside her bed. I liked the fact that the doctors who clustered around her each morning to assess her progress – the consultant Dr Williams, a registrar, senior and junior house officers and various medical students – were followed by a man with a red jacket and a huge smile. Just like every other four-year-old, Hannah loved Father Christmas, and although she was too sick to express her excitement I knew she enjoyed his visits each day. He was something comfortingly familiar – just like the duvet, sheets and pillows Andrew had brought from home after Hannah had told me the hospital ones were too scratchy. To minimise the risk of infection on a ward full of children who were so weak, I had to wash the linen each day to stop bugs breeding and soon realised we needed more supplies to keep up with the constant flow of clean laundry. But I knew the familiar smell of our washing powder would comfort Hannah, just as Father Christmas would – a bright spot in the day, a few moments for her to forget. But after nearly a week in hospital a nurse came to deliver bad news just as Andrew arrived with Oli and Lucy. ‘There won’t be a visit from you-know-who this afternoon,’ she said in a low voice. ‘There’s no one to do it, unfortunately.’ I looked at Andrew – with his big belly and smiling eyes he’d be perfect for the job. ‘Will the costume fit me?’ he asked as he looked at the nurse. ‘Size nine boots OK?’ ‘I’ll squeeze into them.’ The nurse took Andrew off to get dressed as I turned to Oli and Lucy and breathed in their comforting smell while I cuddled them – Oli, a toddler of nearly three, and Lucy, a bouncing baby of fifteen months. I had missed them so much, and seeing the energy and life shining out of them was like seeing shards of light glittering across water – something everyday suddenly become magical. ‘Where’s Daddy?’ Oli asked as he looked up from the colouring book he’d found. ‘He’s gone to the car to get something. He won’t be long. Shall we draw a picture for him?’ Oli picked up some crayons as I jiggled Lucy, happy to feel her in my arms again, and waited for Andrew to come onto the ward. But as I watched him walk up to the first bed I suddenly realised that I might have made a mistake. Would Hannah recognise her father? She was an intelligent child, advanced beyond her years in many ways after being diagnosed with dyspraxia when she was two and a half. The condition was a bit like dyslexia but affected movement and coordination. It meant that Hannah had been late learning to walk and dress herself, but her language, as if in compensation, had developed quickly and she was also very sensitive to other people’s emotions. Hannah could say ‘octopus’ before her first birthday and have long conversations about the plants in the garden by the time she was four. When my granny had fallen over one day while they were out for a walk she’d even calmly insisted to a passer-by that she could look after her. But it was too late to do anything now because Andrew was walking up to Hannah’s bed and all I could do was hope that she didn’t recognise him as he chuckled, ‘Ho, ho, ho’. ‘Father Christmas!’ Oli squealed as he jumped up. I got up with Lucy as Andrew sat down on the chair beside Hannah’s bed and Oli climbed onto his knee, listing the presents he wanted while Lucy sat in my arms, refusing to go anywhere near the strange man in red. When Andrew had finished with Oli, he turned to Hannah and held out his left hand towards her. She looked at him silently and I held my breath. Very slowly, she lifted her right arm and pushed her hand into the space between the bed and chair where her father’s was waiting for hers. Their fingers met in mid-air. ‘You’re being a very good little girl,’ Andrew said softly. Hannah’s mouth curved into a tiny smile as she looked at Father Christmas and I knew this one piece of magic was still safe for her. It was New Year’s Eve 1999 – millennium night – and after two weeks in hospital the intensive phase of Hannah’s first cycle of chemotherapy drugs had ended a few days before. But while I could hear people getting ready to celebrate outside on the streets of Birmingham, inside the hospital everything was quiet as Hannah lay almost unconscious. Two mornings ago the nurses had noticed her vital statistics weren’t normal when they did her usual observations – her pulse was rising, her blood pressure and oxygen saturation were dropping. The doctors knew immediately that Hannah’s heart was struggling and a cardiologist who’d seen her had told me she might be suffering a temporary side effect of the chemo. She’d been put on new medication but Hannah was still dangerously ill and was now on morphine to control her pain. As the soft thud of music from outside weaved through our hushed world, I thought of all the people getting ready to see in midnight and wished Hannah could be among them, ruddy faced and smiling. Then I thought of Andrew and the children at home and sadness filled me that we wouldn’t be celebrating this milestone together as a family. Instead we were far apart and Hannah was lying still on the bed with her eyes closed, barely conscious, oblivious to the nasal canula running underneath her nose to give her oxygen, the feeding tube running up it or the central line attached to her chest. Three sticky electrode pads were attached to a heart monitor which beeped softly and a SATS probe on her finger constantly checked her oxygen levels. All I could do was pray as I sat beside her, willing her back to consciousness. I felt angry and disappointed. How could this be happening to Hannah when she already had so much else to fight? After the hustle and bustle, the rush of emergency when we had first arrived in hospital, the silence now felt overwhelming and all the questions I had been asked since that day rolled in a constant stream through my mind. There had been so many of them. Did I breastfeed? What type of bottled milk did I use? Did I warm it in the microwave? None are proven links to leukaemia, but as I searched for a reason why Hannah was now even sicker I focused on the questions I’d been asked and why. Surely I should have been able to stop the unseen enemy which had sneaked into our life? I must have made some mistake and allowed it in. Hannah was my child. My job was to protect her. The questions almost consumed me – my mind going back and forth as I looked back on our life and tried to pinpoint where I’d gone wrong. I remembered how I’d only breastfed Hannah for a couple of weeks after she was born because I’d gone back to work. I hadn’t had a choice about it, but now I wondered if I’d harmed her in some unthinking way at the very beginning of her life. I’d longed to be a mother when I’d met Andrew eight years before. I was twenty-five and knew I was ready to fall in love and start my own family after returning from a year travelling in Australia. I’d been brought up by my grandmother after my mother had died when I was five, and although my childhood had been strict but loving, the loss had implanted in me a need to create the bustling family life I hadn’t had. My childhood was one of such stillness and routine that I craved a big, messy family full of life and laughter. I’d met Andrew in a village pub where he’d stood out a mile in his suit. Quiet and kind, he was a big man who made me feel safe and when I got home after our first date, I told my grandmother I was going to marry him – even if he didn’t know it yet. I proposed four months later but Andrew refused because it was too soon and I was being typically impetuous. So we waited another year to get engaged and I was over the moon when we started trying for a baby. But two years had passed and I hadn’t fallen pregnant. No one could explain why, and I felt hopelessness seep into me for the first time in my life as the months turned into years. Feeling more and more overwhelmed, I gave up my job and stayed in bed for weeks until realising I couldn’t lie there forever. So I forced myself back out into the world, where I got a job on a production line at a cake factory – repetitive, undemanding work that I didn’t need to worry about – and told myself I would fall pregnant when the time was right. Two months later I did, and was overjoyed. My family was finally starting and I knew I’d do anything to protect it. So when Andrew had been made redundant weeks before Hannah was born I had found a job to support us and returned to work when she was just three and a half weeks old. But leaving her was even worse than I had anticipated because I was soon sent to a conference in Canada by the pharmaceutical company I was working for. I ached every day for Hannah, who was being looked after by Andrew and my grandmother, and was overjoyed when he found a new job. It meant I could go home again and I’d stayed there ever since – first with Hannah, then Oli and Lucy – concentrating on our family life and working part-time as a nurse to help pay the bills. But now, as I thought back to those few weeks of her life and tried to make sense of what was happening, I wondered if leaving Hannah was just the first mistake I’d made without even knowing it. The world closed down to just Hannah and me – she and I in a silent bubble together as we fought her illness, travelling a path that seemed to get darker and darker. Three days into the New Year she was transferred into the high dependency unit – a halfway house between the oncology wards and intensive care. Semi-conscious and still on morphine, we lived in half-darkness, blinds closed and wave sounds playing softly to soothe Hannah. Various different types of therapy were offered to children by aromatherapists and reflexologists who came onto the ward. But all they could do for Hannah was give her crystals – pebble-smooth stones that we put in the palms of her hands as she lay in bed hardly moving. We were closer to the edge of darkness than ever before, and for the first time the word ‘die’ whispered around the edges of my thoughts. Before now I’d refused to let myself think it, pushed it out as I concentrated on Hannah’s treatment. But now I knew I couldn’t ignore it any longer as she lay silently. No one knew for sure yet why Hannah had so suddenly weakened and, desperate to try and make some sense of the chaos inside me, I had asked for a priest to come and perform the Anointing of the Sick – prayers said for those who are dangerously ill. I had been brought up with a strong Catholic faith and Hannah had always enjoyed church. She’d also liked the nuns who visited the children’s ward so much that she’d ask where they were if we hadn’t seen them for a few days. Hannah liked routine and they always came on time before reading the same prayers, exuding a quiet stillness which calmed her. Now I watched the priest as he softly traced the sign of the cross on Hannah’s forehead. ‘Through this holy anointing, may the Lord in his love and mercy help you with the grace of the Holy Spirit,’ he said softly. Hannah did not move or speak but her eyes were open as she watched. The familiar words and phrases of the prayers felt soothing – just as knowing other people were praying for us was. When Hannah had first been admitted to hospital, my great aunt Kitty, who had once been a nun, had contacted all the churches she knew and by now hundreds of people were praying for Hannah. It comforted me to know that we were not alone. After the priest gave me communion and left, I sat down again, lost in thought as Hannah slept. Ever since becoming an adult, I’d been making plans and being busy – first with my career, then meeting Andrew, next came buying a home and finally starting our family. Now I had three children under five to keep me constantly busy and I hurled myself through the hours each day, waiting for the next child’s cry when they fell over or a frustrated howl as they couldn’t complete a task. But now for the first time ever there was no shift to start at work, cleaning to do, food shopping to get or another child to calm. All I could do was concentrate on tiny things: the feel of Hannah’s right hand enclosed in my left one as it lay limply on the bed. It felt so small, as fragile as a shell hurled across a windswept beach, and I focused on the feel of it in mine – the one fixed point in a landscape which seemed to change almost by the hour. It isn’t just emotional certainties you lose when your child falls sick and your world spins off its axis, it is practical ones too – the thousand tiny tasks which make up the physically demanding job of being a mother. Of course you willingly hand over their care to the doctors and nurses trying to save their life. But in doing so, the daily throwaway acts which have made up your life ever since your child came into it are suddenly no longer yours and you realise, for perhaps the first time, that these are the things which make you a mother – loading a dishwasher, wiping a face or turning book pages, each one giving you a purpose and reason which you feel lost without. I clung to the little things I could still do – checking Hannah’s feeding tubes, smoothing her sheets or wiping her hands clean of the blood spots running off the drips – but knew it wasn’t practical care she needed from me any more. Hannah and I had moved beyond an everyday world of yoghurt pots and finger painting, cut knees and spilt drinks. We’d fallen off the map into the lands where dragons lay. But as I sat with her, I realised that I must conquer my fears if I was to be what I hoped for Hannah. I had to stop looking back at the past and searching for a reason where there was none. She needed my courage, reassurance and strength to draw on more than ever now – a fixed point in all the uncertainty. I could not dwell on making sense of the past or controlling the uncertain future. I must live in the moment, finding strength in it and living it with Hannah, knowing it was precious minute by minute, hour by hour and day by day. I had always been so busy focusing on goals and the next plan. Upgrading cars, booking holidays, finding schools – like many people I’d been preoccupied with a future that was just beyond my reach, hardly taking any notice of the moment I was in. But as Hannah’s life hung in the balance I finally saw what I could lose if I wasted the moment. Each one was precious and I wanted her to feel loved in them all. Hannah herself was helping me to see this. Ever since she’d fallen ill she had quietly accepted what was happening, and her calmness had humbled me. She hadn’t questioned the drugs or railed against the endless tests. She hadn’t complained when she was in pain or screamed at the injustice of it all. She had simply submitted herself to what was happening and in doing so had guided me as much as I had guided her as we took uncertain steps through our new world. I knew that Hannah might die and had to accept the possibility, however much I didn’t want to. But the strength she needed from me would not come from looking back or forward. I must live in the moment with her – cling to each one and treasure it. As I sat with Hannah, I knew this was a lesson she was helping me to learn. But what I did not know then was that it would be just the first of many. CHAPTER TWO Precious Time (#ulink_8df8df68-f7a3-5c7b-b71a-40ea91d8de07) It was Dad’s birthday a few days ago and we went out for a meal at a pub to celebrate last night. Mum and Dad, Oli, Lucy, Phoebe and me went as well as Grandma and Granddad, my Uncle Nigel, Auntie Serena and my cousins Katie, who is ten, and Toby, who’s a bit younger than Phoebe. Becky, our friend who used to live over the road from us, also came with her mum Lindy and sister Abby. We all gave Dad his presents when we got to the pub and I’d made him a card using a craft kit which I’d covered in hearts and flowers. I also got him a tie and some chocolates because he loves those. I got to dress up especially to go out because earlier this week I went into town with ?40 that I’d saved up from my pocket money. I don’t often look around the shops but I was really looking forward to going and seeing what there was. I’m awful at making up my mind, though, so I went from shop to shop before going back to the first place to buy the first thing I saw. I always do that because I have to be sure that what I think I like is what I really want. So when I was finally certain, I bought some gold sandals I’d seen in the first shop. It’s still only April and my feet might get a bit cold when I wear them but they’re really nice. I’d like to have heels but can only wear flat shoes because my balance isn’t good enough for high ones. Lucy has got some platforms but they make me fall over. Lucy and I were so excited about going out for Dad’s birthday that we started getting ready yesterday afternoon. We’ve both got makeup and so I did hers before painting her nails. Then she did my toes but I did my fingers because she makes them too messy. Mum doesn’t usually like us wearing makeup but we’re allowed to on special occasions. The trouble was that we were ready by 3 p.m. and so Mum sent me to bed to have a rest. She said I’d be too tired if I didn’t sleep and I knew she was right, but it was still boring. I got out of bed just before we left and had roast chicken, chips, peas and a knickerbocker glory at the pub. Then we sang ‘Happy Birthday’ to Dad as a waitress brought his pudding with a candle in it. That was when the fun really started because some of our friends were on a big table behind us. They’re called Tina and Marco and they own an equestrian centre near our house where Lucy and Mum go riding sometimes. Everything was normal until suddenly a rolled-up napkin landed on the table in front of Lucy and me. We looked around and Marco was laughing, so we lobbed one back. That was it. Marco threw another napkin, Mum chucked one back at him and then Marco flicked a pea which flew over my head and landed on the table. Lucy and I were really laughing by now as I threw a piece of bread. Then suddenly Tina, her daughter Emma and another little girl I didn’t know all joined in. Everyone was at it until Dad got cross and told Lucy and me to stop. ‘You should know better, Hannah,’ Dad said, and I knew he was angry because the people who own the pub are his friends. Mum started clearing up bits of napkin and bread while Dad stomped off back to the car. But instead of feeling bad, I felt annoyed because I was the one getting all the blame even though it wasn’t all my fault. That always happens. Lucy and I can be nutty when we’re together, and once when Dad sent us to our bedrooms we hid in hers and decided that we were going to put Mum’s knickers on our head, bang all the saucepans together and do karaoke so loud that Dad couldn’t hear the TV. We didn’t do any of it in the end but I’m sure I’d have got the blame if we had because I’m the oldest. It really annoys me. So I was feeling angry until I got in the car, and Dad was quiet. Then I started feeling bad because I realised that I’d ruined his party. I felt worse and worse until we got home and I went to bed which was where Mum found me crying when she came in to say goodnight. ‘I’ve messed everything up,’ I told her. ‘And I’ve been told off twice. I know when I’ve ruined things.’ (I’d actually only been told off once by Dad, but I thought Mum was going to as well when she came in to see me so I added that in.) But then Mum told me not to worry and that Dad was fine – everything had been cleared up and no harm had been done – which is when I got angry again. I knew Mum was trying to make me feel not too bad, which was nice of her, but everyone has to feel sorry sometimes and so do I. It annoys me when people treat me differently and that’s why I didn’t like Mum doing it because one of the best things about my family is that I’m normal to them which makes up for all the people who give me the Chitty Chitty Bang Bang look. Remember how scared the baroness was when the children took over her castle? How she screamed at the sight of them? Well, that’s how some people look at me and it’s the worst – worse even than when Dad gets a face like thunder if we interrupt his rugby game on TV – and the reason I hate it is because I know the person giving it to me doesn’t see me as a normal teenager. Now I know I’m not exactly average: I’m thirteen and I’ve been in and out of hospital all my life. But the Chitty Chitty Bang Bang look tells me I’m abnormal, and while I know I’m a bit different I’m not a total weirdo. That’s why I like my mates so much because they never look at me like that, and that’s why I got so angry when Mum tried to make me feel better because it made me feel like it does when a teacher gives out homework at school before saying to me: ‘Do as much as you can.’ They usually say it quietly but even if everyone has left the class I reckon people are still in the corridor so they can hear. When a teacher says that I’m like, ‘Whatever! I can’t run a race but I can do my schoolwork.’ (Actually, I don’t say that but I shout it in my head.) It’s not that I want to do homework or anything. In fact, I hated homework from the moment I started going to school when I was nearly ten. I had not been to school since I was sick as a little girl, and me and homework didn’t get on because when I got home it was dinner time, TV and bed. There was no time for homework and I don’t understand why kids have to do it anyway because we’re at school for more than half the day which should be enough. But even though I hate it, I hate it more when a teacher makes out that I don’t have to do it because I don’t want to be treated any differently to anyone else. So I was still angry when Mum left my bedroom and Dad came in to say goodnight. But then he told me he’d had a nice time and I promised I wouldn’t throw napkins again when we went out, so I felt better. And I know it’s good that Mum and Dad tell me off even though it’s bad, if you see what I mean. It shows that they’re not going to tiptoe around me like some people do. It’s always been that way, and although I can’t remember much about being in hospital with leukaemia Mum has told me that she even got cross with me back then because I kicked a doctor. I couldn’t believe I’d done that! But she’s right to get angry sometimes because if people were nice to me all the time I’d have them wrapped around my little finger. I’d be able to do exactly what I want and there have to be rules otherwise I wouldn’t get anywhere. Things would also fall apart in our house because there are four kids here. It’s a bit like Wind in the Willows when Badger tries to get Toad out of his obsession with cars. Toad is doing all sorts of stupid things and Badger tells him it’s got to stop. But Toad doesn’t listen so they lock him up in his room and he climbs out of the window, escapes and ends up in prison. It’s not until near the end of the book that he realises Badger was right and he was wrong. The problem is that Toad doesn’t have any discipline, and look where he ends up. He has to learn that there are different kinds of discipline too: the bigger one that stops you from chucking napkins around because other people will get angry and the smaller one that stops you from doing things which aren’t good for you. I had to learn that one when I first came out of hospital after saying no to a heart transplant because while I was in bed most of the time at first, my energy got bigger and bigger as I got stronger. But then I realised that if I did too much I’d feel ill again, so I had to learn not to even though I wanted to go mad. I had to save my energy so I could do stuff later like wind Phoebe up otherwise my blood pressure would drop and I’d see funny lights in front of my eyes. It was really hard because sometimes I wanted to get up so much that I almost had to ask Mum to pin me down. But eventually I taught myself to stay still even though being bored and tired is the worst thing in the world for me. Being bored and tired is worse than salmon, swordfish, prawns in mayonnaise, my computer crashing or even getting cold when I go outside and knowing I have to go back in again because I’ve had it. Being bored and tired is worse than all of those, but I’ve had to learn that I must lie down until the tiredness goes away because that’s the only way I’m going to feel better, even if it takes days. That’s why discipline is important, that’s what Toad didn’t learn until it was almost too late and that’s why I’m glad Dad told me off last night. If he didn’t do it sometimes then I’d run rings around him and Mum like I’ve seen some children do in hospital. I knew one girl who refused to eat anything except crisps and I realised that it’s easy to get spoiled if you’re sick and I’m glad I haven’t been. My mum and dad have made me happy but I don’t think I’m a spoiled child. Getting told off occasionally makes me feel normal, and I like that. It’s really important. ‘I don’t want any more medicine,’ Hannah whispered as I bent towards her. ‘You must, Han. It will make you better.’ ‘I don’t want it,’ she said with a sob. ‘I’m tired.’ ‘I know, Han, but soon you’ll have had enough medicines and then you’ll be able to play again.’ Hannah’s eyes were uncertain as she looked at me. ‘Would you like me to read you a story?’ I asked softly. ‘No.’ ‘Are you sure?’ ‘Yes. I’m busy.’ ‘Doing what, Han?’ ‘Fighting all the bugs.’ Hannah had regained consciousness soon after New Year, and days later we’d learned that she had gone into remission. It was wonderful news because it meant there were no cancer cells in her blood. But remission isn’t a cure and in a way there’s no such thing when it comes to the unpredictable foe that is cancer. Like every other patient, it was simply a question of time for Hannah – five years of remission was the benchmark of true hope, five years before we could believe with any certainty that she was really well – and even though her remission was a good start, we could not draw quiet confidence from it because the problems with Hannah’s heart had still not been solved. In fact, they had worsened during the second chemo cycle and were only just being controlled by medication as the doctors tried to decide what was happening. They knew for sure that a virus wasn’t causing the problem and had adjusted Hannah’s medications to keep her stable. But she had developed septicaemia which was putting extra pressure on her heart and still needed to complete all six chemo cycles to maximise her chances of being well in the long term. Andrew and I had been shown charts mapping the recurrence rates of leukaemia and seen for ourselves in black and white the lines on the graphs which dived down dramatically the more chemo a patient had. I knew Andrew found the situation very hard. He struggled with the fact that we were not being given definite answers about Hannah’s heart, but I understood that medicine was often more of an art than a science, a piecing together of clues before coming to a conclusion based on instinct instead of certainty. It takes time to make a diagnosis in such a complex situation, and I trusted the doctors to do all they could to find out what was wrong. In the meantime, we’d stayed in the high dependency unit for Hannah’s second round of chemo to allow the doctors to keep a close eye on her, and this time the drugs had taken an even greater toll on her body than before. As they worked their way into her system, Hannah started being sick up to six times a day and had terrible diarrhoea. Her fingernails and toenails had also fallen out to reveal raw red nail beds which I dressed each day with tiny pieces of paraffin gauze which had been chilled in the fridge. Wrapping them loosely around her finger and toe tips, I would bandage each one as she cried out softly. She also needed gauze pads placed under her heels, shoulder blades and bottom to stop sores developing because her skin was peeling – the new skin so painful that she had to be handled like a burns victim. For several days we could hardly touch Hannah because she was in too much pain, and even her mouth bled – blood caking her gums, teeth and lips which I tried to wipe gently away. As I did so, I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain, and although I wished I could feel it for her, I couldn’t. Doubts and distress filled me as I watched her suffer. Sick and exhausted, she lay in bed as the drugs worked their way through her body – her face the chalk white of marble, the only movement coming from pink tears which trickled from the corners of her eyes because her mucous membranes were so fragile that tiny spots of blood had seeped into them. Silently, Hannah would cry tears the colour of sunsets which left red crackled lines behind on her pale skin – the fragile markings of her pain. I bled with Hannah too. Soon after Christmas I’d discovered I was pregnant with my fourth child and was pleased despite everything. I knew it was a bad time and people would wonder how we’d ever cope, but I felt that any life was a blessing and this one was no different. Soon after finding out, though, I had started bleeding and knew I was miscarrying. I told myself the baby had died for a reason and I needed all my strength to look after Hannah. But as I looked at her pink tears, I didn’t know if I could believe in reason any more. What was happening to her simply didn’t make sense. Hannah sat in the middle of the towel-covered bed. The drugs for her second chemo cycle had finished last week and the curtains were drawn around her bed as a nurse stood in front of us holding a pair of hair clippers. The previous day Hannah had looked into a tiny pink Barbie mirror before turning to face me. ‘I look like Bert,’ she’d said. ‘Can I be like the others, please?’ Bert was one of her favourite Sesame Street characters, and I knew what Hannah meant. Many of the children on the oncology unit had completely lost their hair and she had obviously had enough of being only halfway through the process. I was glad she was telling me what she wanted again because it meant the little girl I knew was coming back to me. ‘Of course we can give you a haircut, my darling,’ I said. ‘Shall we ask a nurse to do it?’ ‘Yes, please.’ I knew I couldn’t bring myself to do it. Hannah’s pale gold hair had always framed her beautiful blue eyes and I didn’t feel able to rid her of it when only weeks before I’d tied it back into bunches and plaits ready for school. It had felt like such a milestone when she started, as if she was moving a step in front of me to venture out into the wide world – the beginning of the rest of her life. ‘This won’t take a minute,’ the nurse said with a smile as she stepped towards the bed. Hannah had seemed excited as we’d planned her hair ‘cut’ but now didn’t look so sure as the clippers’ harsh metallic buzz filled the room. She was silent as the nurse started cutting and I stood motionless as the last of Hannah’s hair started to fall to the floor and tears ran down her face. ‘I want my hair,’ she said with a sob. I longed to comfort her, to tell the nurse to stop even as I made myself smile brightly to try and calm her. ‘Nearly there, Han,’ I whispered. ‘Soon you can try on one of your pretty hats.’ I’d bought a couple that I hoped she might like – a straw boater covered with flowers, a red chequered baseball cap and a pink beanie made of soft sweatshirt material. Hannah was quiet again until the clippers finally fell silent and I looked at my child transformed. Her head was completely bald and her eyes looked even bigger in her gaunt face as she lifted her hand to touch her naked skull – an almost questioning gesture, like a toddler reaching out a tentative foot as they try to climb a step for the first time. ‘Which hat would you like?’ I asked. Hannah pointed at the boater and I slipped it onto her head. ‘It’s too itchy,’ she said. ‘Silly Mummy,’ I said as I took off the boater. I hadn’t thought of how straw would feel on newly bare skin. There were so many things to learn. ‘Can I try on the pink one?’ she asked. ‘Of course you can.’ I slipped the beanie onto her head. ‘That’s better,’ Hannah said, and smiled. ‘My head’s not cold any more.’ Oli’s third birthday was in late January, and after almost six weeks in hospital with Hannah I was desperate to try and get home for it. I thought of him and Lucy all the time: as I woke in the morning and wondered if they were still sleeping; as I ate my lunch from a hospital tray and hoped Andrew had persuaded them to eat their vegetables; when I heard the sounds of a TV programme Oli liked and imagined him watching it; or when a baby brother or sister came onto the ward and I thought of Lucy’s smiles. We saw them every other weekend and they’d also come to stay with us for a night. But it wasn’t a great success because Lucy had been in Hannah’s bed and Oli was beside me on the pull-out so no one was comfortable. But I couldn’t bring myself to use the family suite because it meant leaving Hannah on the ward overnight and we both felt anxious if we were apart too long, as if the million invisible strands joining us were strained by distance. But I was nevertheless aware that children’s lives move fast because things had already changed. I had been sitting by Hannah’s bed one day when I looked up to see Lucy toddling towards me. She’d been on the cusp of walking for a while but my heart missed a beat as I realised I had not been there for her first steps. It was a moment that could never be recaptured, which was why I wanted to be at home so much for Oli’s birthday. Hannah was also going to make the journey with me because, although very weak, the doctors thought she could manage the short trip and I’d been on and off the phone all week organising Oli’s party. He’d asked for a pirate theme and I’d arranged for a bouncy castle to be put up in the garden. I’d also managed to slip out of the hospital for a couple of hours to buy pirate hats and party bags. Now Hannah seemed as excited as I was that we were going home. ‘What presents will Oli have?’ she kept asking as we waited for Andrew to pick us up. ‘Pirate ones!’ I exclaimed with a smile. We were all a little quiet on the ninety-minute journey home and after pulling onto the drive, Andrew lifted Hannah out of the car to take her inside. I followed behind and stepped over the threshold to smell a different home. Everything was spotless – even the black-and-white checked kitchen floor that was usually covered in paint splashes and crumbs. I knew Andrew and his parents had gone to a lot of trouble, but I felt strange – like an animal that’s gone back to its lair to find the scent of a stranger there. My home felt different now that I was not in it. ‘Mummeeeeeee,’ Oli shouted as he ran towards me. ‘Look at the food. Have you got my present? When does the party start?’ I felt a rush of pleasure to see him so excited as he took my hand to lead me into the garden and look at the bouncy castle. But as we walked outside I suddenly felt anxious. Was Hannah OK? I took a deep breath as I told myself she would be fine. Andrew was looking after her now. This was my time with Oli. He deserved that. As the party got under way the house filled with children and parents and I went to get Hannah from the lounge to carry her into the kitchen. I wanted her to feel part of the day, not separated from it, and I sat her on the work surface so she could look out of the window at the children playing in the back garden – a gaggle of three-year-olds oblivious to the chill as they flung themselves on and off the bouncy castle. Their cheeks were pink and their laughter echoed through the frozen air as their mothers chatted to each other. Hannah sat on the kitchen worktop beside me and I looked at her sitting quietly. Tiny veins covered her bald head, a transparent feeding tube snaked across her pale cheek up her nose, an oxygen tube ran under it and two drip stands stood like sentinels at a gate beside her. There were moments when she looked almost old and wizened, as if the weight of the treatment was too much for her to bear. Soon she would need another dose of heart medication. ‘It’s too cold for me in the garden, isn’t it, Mummy?’ Hannah said as she stared outside. I looked at her, not sure what to say. I knew how much she wanted to play, to be a little girl again. ‘Yes, my darling,’ I said softly. ‘But you can stay in here with me and I’ll watch with you.’ Hannah sat still and quiet as she gazed at her brother playing with his friends. But just before we set off back to the hospital, Andrew cleared the bouncy castle and I carried her outside. It was freezing cold as I stepped gingerly across the garden with Hannah in my arms. She felt so fragile, like a baby wrapped up against the elements. Lifting her gently, I sat her on the edge of the bouncy castle and kneeled down to look at her. She didn’t have the strength to make herself bounce and I knew she wouldn’t want to. But Hannah was smiling as she sat quietly – staring at the grass, feeling the wind on her face and breathing in the world. It wasn’t just the doctors and nurses on the oncology ward who were filled with energy, kindness and patience. Many others worked with them to make life on the ward more bearable and perhaps the most inventive were the play leaders who found something to make even the sickest children smile. If a boy or girl was lying in bed and crying, a play leader would slide wax paper under their cheeks to catch their tears and show them the pattern they had made on the paper – a spidery trail of drops and wiggling lines to make them smile – or if a child was too weak to move, they would make a shape out of play dough and put it into their hand so their fingers could curl around it. They seemed to possess a never-ending treasure chest of ideas to help children smile and Hannah always looked forward to their visits. There was one in particular though who could always make her laugh and Hannah’s favourite game with Sarah involved dipping sponges into water before lying in wait for a doctor to pass the bed. ‘Go on!’ Sarah would shriek and Hannah would toss the wet sponge at the unsuspecting passer-by. ‘You got me again!’ the doctor would exclaim with a smile as the missile hit him or her and Hannah started to giggle. But the one thing she didn’t want to do even with Sarah was talk about her treatment. Although the play leaders had dolls with miniature drains and drips to help the children understand their treatment, the only person Hannah spoke to about it was me and as she remained in remission, her inquisitive nature began to show itself once more. ‘Why are they cleaning my wiggly again, Mummy?’ she’d ask as the nurses flushed out her central line which had to be done every day to ensure the site was kept completely sterile. ‘To make sure there are no bugs, Han.’ ‘Like the bugs in my blood?’ ‘Different ones, but we don’t want any kind of bugs to hurt you.’ She was also becoming increasingly impatient when blood was taken from her thumb on every visit to the weekly clinic where in-patients and children who were being treated for leukaemia at home were seen. Unlike the routine blood tests which were done each morning using a syringe in her central line, this one involved making a knick on the pad of her thumb with a small blade before a nurse squeezed long and hard enough to collect a few millilitres of blood. For a long time, Hannah didn’t say anything about it until one day we were sitting on her bed. ‘Mummy?’ she asked. ‘Yes, Han.’ ‘I’ve been thinking. I’ve got my wiggly in my chest and I know they can take blood out of that, so why do they need to use my thumb too?’ ‘I think it’s because they need special blood from the edges of your body and not blood that’s from near your heart,’ I replied. Hannah didn’t say anymore but firmly refused to have a thumb test done when we next went for one. ‘You can use my wiggly,’ she said to the nurse as she pointed to her central line. I knew there was no point in fighting with her because Hannah could be very sure if she made up her mind and as she remained in remission, her explanations about how she wanted things done only increased. ‘Please use just a tiny bit of sticky,’ Hannah would say as a nurse changed her dressings because the tape securing them irritated her skin. ‘Is that enough?’ she’d ask solemnly when they cut a tiny piece off the roll. At other times Hannah would refuse to let the nurses remove all the tape securing her central line because it was just too sore. ‘I think you’ll have to wait until tomorrow,’ she’d tell whoever had come to see her. Or she’d agree to a dressing change but insist on helping – slowly peeling back the gauze before picking up a fresh piece and holding its edges. ‘We mustn’t breathe on it because there might be bugs,’ she’d say to the nurse. I knew the busy doctors and nurses might expect me to step in and stop Hannah asking so many questions and I understood that there were times when I had to draw a line with her, however sick she was. For instance, I’d told her off when a group of doctors had gathered around her bed one day and Hannah had kicked out at one as she bent down to look at her, catching her on the side of the face. ‘Hannah!’ I had snapped as I pushed her leg back down. I knew that Hannah felt frustrated and angry but I had to help her learn to carry the heavy burden of being sick by sometimes imposing normal rules, however hard it felt. I’d seen for myself that many parents on the ward found it difficult to impose limits on their sick children. But while I understood how difficult it was, I didn’t want Hannah to forget what normal life was like. So I was prepared to draw lines for her on some occasions but on others I was not, and one of those was when she asked questions about what was happening. Hannah simply wanted to know about who was doing what to her, how and when and her views deserved respect. She was the one who had to live all this and while my job was to discipline her at times, it was to fight for her at others too; ask questions when necessary and ignore the answers occasionally. I knew this because Hannah’s illness had awoken a protective instinct so strong that it almost shocked me. Like any mother, I’d always felt I would do anything to protect my children. But it wasn’t until my love was tested that this feeling became so fiercely practical. My need to protect her washed away my concerns about what people thought of me, the fear of doing the wrong thing and the desire to tiptoe around for fear of causing offence. Early on, I realised that I had to let go of worrying about how my actions were viewed as long as I believed they were right for Hannah. So although medical advice was always given with the best possible intentions, there were times when I rebelled against it: ‘forgetting’ to brush her teeth when her mouth was bleeding during chemotherapy and too painful to disturb; or asking the nurses to wait a couple of hours so that medications, blood samples and dressing changes could be done together rather than spread out which only prolonged the discomfort. I found my voice more and more because I wanted to make sure the quality of the life Hannah lived each day was the best it could be and if that meant making her feel safer or giving her just a few moments of respite from her pain then I would do it. Like any other parent, it was a question of balancing my child’s long-term good with the short term. Sometimes that meant the rules had to be respected for Hannah’s sake – but at others they had to be broken. ‘She really shouldn’t go into theatre with her nail varnish on,’ the nurse said as she looked at me. Hannah was getting ready to go down and have her central line changed. It was the time both of us dreaded most – she hated being put to sleep, and watching her slip into unconsciousness always made me afraid. She had to have a lumbar puncture every month for detailed blood tests to be done and we both went quiet when the time came. Hannah would be lifted onto a trolley and I’d walk beside her through the long hospital corridors – down to the nurses’ station, into the lift, up one floor, out the lift, down another corridor, into another lift, down two floors, into another corridor – each step taking us nearer to theatre. ‘I don’t want to go to sleep,’ Hannah would cry. ‘It will just be for a little while,’ I’d reassure her. ‘But I don’t want to.’ ‘The doctors need to make you sleepy, my darling, but it won’t be for long. A nurse will be with you and I’ll be there until you go to sleep.’ ‘But I’m not tired.’ ‘Well, the doctor will give you a special medicine so that you are.’ ‘How can he do that?’ ‘Because he has lots of medicines to do different things: some fight the bugs in your blood and some put you to sleep.’ For a little while Hannah would go quiet as we travelled through the hospital, but as soon as we got to the three anaesthetic rooms leading to the theatres she would start crying. Scrabbling for me with her hands, the doors would open and she would be pushed feet first into the tiny room. ‘Mummy, mummy, I don’t want to sleep,’ she’d sob. ‘I’m here,’ I’d whisper. ‘I’m with you.’ But as a mask was slipped over her face or the anaesthetic was connected to her central line, Hannah would struggle to stay awake even as she started falling into unconsciousness. ‘Help me, help me, help me,’ she would cry as her body twitched and I had to leave the room so that the staff could intubate her. It was only when I got back into the corridor that I would start to cry. As Hannah lay unconscious in theatre, I would think of her pleas and the cries she had made as she clawed the air for me. Seeing her in pain, whether mental or physical, went against every instinct I had as a mother however much my rational self knew that she had to have treatment. Now I looked at Hannah’s toenails as the nurse held out the nail varnish remover for me and I wondered what to do. Hannah loved having her nails painted, each one a different colour so that she could stare at the rainbow on her toes – pink, blue, green, red, yellow – as she lay in bed. Even when she couldn’t speak, she’d wiggle her toes so the nurses could admire them. I knew what I had to say. ‘I can’t take the varnish off,’ I said to the nurse. She looked at me – sympathy and routine wrestling across her features. Nail varnish was supposed to be removed during a general anaesthetic so that the patient’s nail bed colour could be checked as an indicator of circulation. ‘Just one?’ she asked. ‘No,’ I replied. ‘If I do a toe then you’ll do a toe, then a finger, and soon it will all come off.’ ‘But I think we’ll have to.’ ‘Well, I don’t want to do it. I’m sorry but I know there are many other ways of checking that she’s OK without seeing her toenails.’ The nurse looked at me. ‘If you have to take it off then I want you to do it while she’s asleep,’ I said slowly. ‘And if you do then I would like someone to draw a chart with every one of her fingers and toes written on it so that you can reapply the varnish before she wakes up. I know it’s a lot of work but it’s important to her.’ The nurse looked at me. ‘We’ll see what we can do,’ she said with a smile. As the nurse left the room, I looked at the colours sparkling on Hannah’s toes and breathed a sigh of relief. If I was going to let the doctors do what they must to save my child’s life, then they had to listen to me when it came to making it slightly easier for her. She loved looking at her painted nails. I wanted her to have that. I could hear the cries as they cut through the stillness of the ward. It was the early hours of the morning and I sat up to check that Hannah was still asleep. The sobs echoed down the corridor and cut through me – a haunting lament for a son or daughter lost, an animal howl of grief that made my heart twist. Somewhere nearby, a child had lost its fight against the illness we were all trying to conquer. These were the darkest moments on the unit – the time when my hope was stretched to its limit. Each day I clung onto it, knowing what might happen if Hannah’s treatment was unsuccessful but believing it would be. Only the sight of an empty bed which hours before had been filled by a dangerously sick child, or the quiet sadness which curled around the unit when a girl or boy died, threatened to dent the dam of hope I’d built inside. ‘Mummy?’ I heard Hannah whisper. ‘What’s that noise?’ I got out of bed and sat down beside her. Looking at her pale face, I wondered how I could possibly explain what had happened without showing my fear. ‘I think one of the children is very poorly and their mummy is sad,’ I said softly. ‘Have they died?’ Death was a concept Hannah had quickly become familiar with in hospital. It was part of life here and she knew that children who were there when she fell asleep had sometimes gone by the time she woke in the morning. ‘I don’t know, Han.’ I smoothed her hair back from her forehead, soft strokes to try and soothe her back into sleep. I didn’t want these sounds to frighten her. ‘What does heaven look like, Mummy?’ she asked. I paused for a moment. I’d tried to make death and heaven things that didn’t scare Hannah when we’d talked about this before. Now she wanted to again. ‘Heaven is a beautiful place where God lives,’ I said. ‘There are no bad people there, or medicines. Instead there are lots of apples on the trees and daisies in the fields.’ ‘Do you have to go to school in heaven?’ ‘No. You can play.’ ‘How do you get to heaven, Mummy?’ ‘If you’re really, really poorly then you fall asleep and wake up there.’ ‘Will I go to heaven?’ ‘Not now, Han. You only go when you’re very, very sick.’ ‘I’m not poorly enough?’ I paused for a moment. A sadness so strong filled me that I could hardly breathe but at the same time I felt a sliver of still peacefulness – gratitude that Hannah could ask questions and trust me to give her any answers I could. ‘No, darling. You’re not poorly enough and I promise that you’ll wake up tomorrow for a whole new day.’ I bent to kiss her. ‘Now close your eyes and I’ll stay right beside you.’ I pulled Hannah’s duvet around her and waited until I was sure she was sleeping again. My body felt tense, my skin almost prickling, as if an aftershock of the woman’s cries still pulsed through me. I thought of all the other parents here in this huge hospital, wondering who else had lost their child tonight. If it wasn’t now, it would be tomorrow or the next day; if it wasn’t an illness, it would be a child brought in after a terrible accident. I shivered as I thought of those parents for whom bereavement came in an instant, the mothers and fathers who had no sign that grief was about to rip a hole in the fabric of their life. Even though I had watched Hannah walk a road I had wished many times that I could travel for her, I was glad I had been given the chance to walk by her side. She and I had had time together – to talk, smile, play games and just lie in silence. I’d had time to comfort and soothe her, prepare her in whatever way I could for whatever lay ahead and give thanks for being her mother. Now I thought of other mothers suffering a pain I couldn’t even begin to imagine as they tried to negotiate a world they never wanted to know and vowed that I would never take time for granted again. As I listened to the steady breathing of Hannah’s sleep, I knew that once again she’d taught me just how much I had to be thankful for. CHAPTER THREE Not Ours to Keep (#ulink_67923b37-2f92-554c-9983-e8a7b36e1e24) It’s Easter 2009 and I’ve just got back from holiday. It was brilliant. We went to Cornwall for a week and I really enjoyed myself because there have been loads of times in the past when I haven’t got to go away with Dad, Oli, Lucy and Phoebe during the school holidays. I went last year but didn’t enjoy it much because I was ill so I spent most of the time in my wheelchair and kept getting cold, which meant Mum had to put me back in the car with a rug. We spent ages sitting in there together while the others did stuff, which really annoyed me. But this time I felt much better and wondered what my doctors would say if they could see me playing on the arcade machines and eating candyfloss. You see they thought I wasn’t going to get any better when I left hospital nearly two years ago after saying no to a transplant. I knew that not having the operation would limit my life but I just didn’t want to have it. Instead I was given a pacemaker, and although my heart still doesn’t work properly and I have to spend a lot of time in bed, I’m stronger now and no one expected that. I like the fact that I’ve proved the doctors wrong. I did it the first time when I was little and had leukaemia. Now I’m doing it again. I don’t know if I’ll be so lucky a third time, but I bet those doctors are amazed I’ve made it this far. We left Mum at home so that she could have a rest while we went to Cornwall. With all of us, the animals and the horses, she gets pretty tired so she wanted to be by herself for a bit. But it didn’t work out like that because my great aunt Kitty got ill as soon as we left so she came to stay and Mum didn’t have the holiday for herself that she’d planned. But she didn’t mind because that’s just how she is. If anyone gets sick, then she’s the person who looks after them. If you ask me it was brave of Dad to take us all away on his own, though. Oli, Lucy and I can look after ourselves most of the time but you have to keep an eye on Phoebe, which is hard because she never stops and Dad’s not used to it like Mum is. We stayed in a caravan in a town called Looe and went to the arcades, played bingo, ate fish and chips and even went gold panning in a river. I found a tiny chip but not enough to make a ring or anything. Dad also took us shopping and bought me a purple and red checked jacket with a furry hood and a pair of boots for Phoebe. But she didn’t want to let go of them after Dad had paid and the girl in the shop needed to put them in a bag. So I had to chase her around the shop because I knew someone might think we’d stolen the boots if we walked out without a bag. That’s what I mean – Phoebe is a terror. I was a bit worried before we went away because my wheelchair didn’t fit in the back of the car. But I was also happy we weren’t taking it because although it’s pink which means it’s as nice as it can be, I still like to walk. I shouldn’t have worried, though, because I didn’t need my chair in the end. That’s what seems to happen when I’m really excited about something – somehow I find the energy to do it. It’s only afterwards that I feel ill. I think that’s why I managed to go on a rollercoaster in Cornwall. I really wanted to do it because I’d never been on one before. But as we queued, we saw a sign which said, ‘Don’t go on if you’ve got a heart complaint,’ and I felt worried that Dad was going to stop me from going on. But then he smiled and said we wouldn’t tell Mum so I knew he was going to let me. It was amazing. Flying through the air and laughing as the wind rushed by. It was so fast. I screamed my head off. Now I’m home again but I’m still not back at school. I’ve been trying to go for months but it hasn’t gone that well because I’ve been ill or something else has happened and I’m missing my mates. Simone’s been telling me what’s going on and the latest news is that she and Tiago have split up. I don’t think she’s that bothered about it. I wish I could be at school, though, instead of hearing about it on the phone and one of the reasons why I like being with my friends is because they don’t look at me all worried or go quiet as they wonder if I’m tiring myself out. They know that if I’ve done too much the colour will drain from my face, I’ll see spots in front of my eyes and have to lie down until I pick back up again. They trust me to know when I need to slow down and leave me to get on with it, which is what I really like. But since I came out of hospital after having the pacemaker I haven’t been able to get to proper school a lot of the time. Instead I go to the one at Hereford Hospital where the day only lasts the morning and we have our lessons in a classroom at the end of the children’s ward. There are usually four pupils and two teachers, which is great because I get help with maths which is my hardest subject. I don’t get numbers and my mind wanders easily when I don’t understand something so I usually end up staring out of the window. But it’s not so easy to daydream when you’ve got a teacher sitting right next to you. I like going to hospital school, though, because at least it means I’m well enough to do something. When I first came out of hospital nearly two years ago, after saying no to the transplant, I just lay in bed all the time because I was so ill that the doctors had said I wouldn’t get any better. But I knew I would, even though my heart wouldn’t, if you see what I mean. I had the pacemaker and a drug called Dobutamine to make my heart beat stronger. Most of all, I knew I’d get well because I hate being in hospital so much that being at home always makes me feel better. The Dobutamine gave me really bad headaches, though, and was a real pain because I had to have it through a central line attached to a syringe driver that went everywhere I did. It was like Hansel and Gretel but with a syringe driver instead of bread. So even though it kept me going, I was really happy when I stopped taking the Dobutamine last year and I’ve been getting stronger ever since. At the moment I seem to be doing OK with just my pacemaker. I know exactly where it is because it’s underneath a scar on my chest, just across from my heart. It’s got four wires, one going into each chamber of my heart, and sometimes I can feel it zapping. The worst, though, is having it tested because when one side of the pacemaker is switched off, I can feel my heart beating really hard against my chest until they turn it back on and I can feel the difference immediately. Most of the time, the problems with my heart mean that I just have to make sure I don’t get too tired because that’s how a bad heart makes you feel – so tired you can’t even lift your head off the pillow sometimes. It’s because there are four chambers in everyone’s heart – two on the left and two on the right – and the ones on the right side of mine don’t work properly. Think of it like doors that are blowing in the wind instead of being locked shut. The blood in my heart does not pump properly so my heart needs all my energy to keep going, which doesn’t leave much for the rest of me. The pacemaker has helped, though, because if my heart gets tired and slow it says, ‘Jump to it.’ My heart can also beat too fast and the pacemaker slows it down as well. It’s a bit like a schoolteacher telling the class to sit still and start working. Occasionally I can feel it when I’m ill in bed and my blood pressure has dropped. Sometimes it’s like a vibration but at others it’s more like a ping! I know it’s the pacemaker because before I had it fitted I never felt like that. Sometimes it stops me going to sleep but most of the time I can’t feel it. The doctors know what’s going on in my heart because they do scans like the ones women have when they’re pregnant. They’re weird because I can see my heart and the blood going in and out of it in different colours on the screen – red and blue. That’s when I can see the valves aren’t closing properly and one of the sides of my heart is leaking which I know isn’t good. Even though I feel better now, the doctors have told me my heart has not improved, which upsets me a bit because I think I’ve been doing OK. Now we’re back home after our holiday and Oli, Lucy and Phoebe have started school again, which means the house is quiet. I get lonely sometimes because there aren’t many other ill children around here so there’s no one of my age to talk to. But I also quite like being quiet because although I love my brother and sisters, they can really annoy me at times too. Oli and Lucy know all the best hiding places in my bedroom so if I try to keep something secret they’ll always find it. Phoebe is also in and out all the time and if I’m feeling tired I just want her to leave me alone even though I know she doesn’t understand. When I’m really ill it’s as much as Mum can do to get her to come down the stairs in the morning without screaming, and so it’s not surprising that she doesn’t get it when I’m just ordinary ill. Being on my own again means I’ve got lots of time to think and I’ve been wondering why people are still so interested about me not having the transplant. Sometimes I get sick of talking about it because I think there are other more important things to say. But everyone went mad when they found out about my decision after a newspaper did a story about it. That was last year but journalists still ring up to see how I am and ask the same things over and over again. Why didn’t you have the transplant? What made you decide not to? Will you reconsider? One even asked me once how I wanted my funeral to be. Questions like that annoy me. I’m thirteen and I’ve had to talk about dying. It’s not that I hate mentioning it but I don’t like going on about it. No one does. I can talk about it to a certain extent but then I go quiet. I just wish people would accept that I don’t want the transplant. I want to be at home even though I know the doctors have said I won’t get better. It was a big decision but I wanted to make it even though I felt scared and sad and anxious all at the same time. Mum and Dad said they’d choose for me if I wanted them to but I didn’t because I knew they might feel guilty if something went wrong. It was my decision. No one else’s. And I made it for the right reasons. Now the summer term at school has started, I’m looking forward to September because I hope I’ll be well enough to start Year 10. It’s scary because it only seems like yesterday that I was in Year 7. I’ve already picked my GCSEs and I’m doing the five main subjects plus ICT and something else I can’t remember. I’m trying to do a bit of everything because I’m at a crossroads about jobs and need to learn as many different things as I can. At the moment there are three jobs I’d like to do: mostly I want to be like Cheryl Cole but I also want to be a fashion designer and make pink clothes because there aren’t enough of them, or be the boss of a company like Alan Sugar in The Apprentice – really rich and in charge of everyone. To keep myself lazy busy now I’m home and everyone else is back at school, I’ve been watching my new favourite film – Mamma Mia! It’s brilliant, cool and fab all at the same time. I like the dancing and the jokes but most of all I love the singing and can’t decide which is my favourite song. It’s great when the lady sings ‘Does Your Mother Know’ to her boyfriend on the beach, but I also like ‘Honey Honey’ because it always makes me laugh when Sophie sings ‘You’re a doggone beast’ and giggles. The songs are cool and I’ve been sitting in my room reading the words on the CD cover and singing along. Sometimes I get up and dance a bit too. Head banging is my favourite thing because it makes me feel dizzy, although I sometimes have to sit down if I do too much. But it feels great while I’m doing it, and that’s what counts, isn’t it? Of all the systems, processes and cycles that make up the miracle of human life, perhaps the most amazing is the heart – the power house of the human body which keeps the brain and organs fed with blood. An adult heart beats on average between 60 and 100 times every minute of every hour, day, week, month and year of a person’s life, however long – a feat of natural engineering that has never been surpassed by the bridges, rockets or machines built by people. Since New Year we’d known Hannah’s heart wasn’t pumping as effectively as it should have been. But as time had passed it had become increasingly clear that the problems were not being solved by medication. Hannah was still tired, weak and out of breath – the classic symptoms of heart abnormalities – and I was terrified when the doctors told me she was suffering mild heart failure. I tried to stem my panic by telling myself the term was a catch-all which covered a huge range of possibilities from sudden, severe and fatal heart failure to temporary symptoms from which a patient can recover. Heart failure can mean anything from a weakening of the muscles of the heart to a virus which disrupts its electrical signals or a glitch in one of the valves. No one knew what was causing Hannah’s problems and I simply didn’t dare consider they might be anything other than temporary. But as she rested after her second round of chemotherapy, Dr Williams and her cardiologist Dr Wright decided they needed to do a more in-depth scan to give them a fuller picture of what was happening. Hannah had had scans including ECGs to measure the electrical activity of her heart and mini echocardiograms which used sound waves to create a picture of it, but now the doctors needed to know more. ‘Is my heart still poorly, Mummy?’ Hannah had asked when I told her she was going to have a special X-ray. ‘The doctors aren’t sure so they want to look very closely,’ I told her. ‘Has my heart got bugs like my blood?’ ‘We don’t think so, but Dr Wright will use his special machine to find out.’ ‘Will he make my heart better?’ ‘I hope so, Han.’ A couple of days later we were taken to the X-ray unit, where Hannah lay on a bed as Dr Wright smeared gel onto her chest before pushing a probe across it. Working around the central line coming out of her chest, he guided it until a picture appeared on the monitor beside Hannah’s bed. Before now the scans had only contained blurry outlines and shadows but this one was giving us a far more concrete image of what was happening inside Hannah’s body. Andrew stood close to me as we watched her heart expanding and contracting, the blood rushing in and out of it in waves of blue and red across the screen. Pressing buttons as he moved the probe across Hannah’s chest, Dr Wright freeze-framed images to take detailed measurements. Lines and shapes, trapezoids and rectangles appeared on the images to give an exact assessment of Hannah’s heart rate and function. Numbers popped up on the screen and I stared at them, willing the figures to give us good news, praying that it wouldn’t be bad. When the scan was over the doctors went away to talk before calling Andrew and me back to see them. Their faces were serious as we sat down. Конец ознакомительного фрагмента. Текст предоставлен ООО «ЛитРес». Прочитайте эту книгу целиком, купив полную легальную версию (https://www.litres.ru/hannah-jones/hannah-s-choice-a-daughter-s-love-for-life-the-mother-who-let/?lfrom=688855901) на ЛитРес. 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