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

‘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?’