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

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.