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

CHAPTER ONE Seize the Moment
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.