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

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СКАЧАТЬ 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 СКАЧАТЬ