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

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.