Hannah sat on the kitchen worktop beside me and I looked at her sitting quietly. Tiny veins covered her bald head, a transparent feeding tube snaked across her pale cheek up her nose, an oxygen tube ran under it and two drip stands stood like sentinels at a gate beside her. There were moments when she looked almost old and wizened, as if the weight of the treatment was too much for her to bear. Soon she would need another dose of heart medication.
‘It’s too cold for me in the garden, isn’t it, Mummy?’ Hannah said as she stared outside.
I looked at her, not sure what to say. I knew how much she wanted to play, to be a little girl again.
‘Yes, my darling,’ I said softly. ‘But you can stay in here with me and I’ll watch with you.’
Hannah sat still and quiet as she gazed at her brother playing with his friends. But just before we set off back to the hospital, Andrew cleared the bouncy castle and I carried her outside. It was freezing cold as I stepped gingerly across the garden with Hannah in my arms. She felt so fragile, like a baby wrapped up against the elements. Lifting her gently, I sat her on the edge of the bouncy castle and kneeled down to look at her. She didn’t have the strength to make herself bounce and I knew she wouldn’t want to. But Hannah was smiling as she sat quietly – staring at the grass, feeling the wind on her face and breathing in the world.
It wasn’t just the doctors and nurses on the oncology ward who were filled with energy, kindness and patience. Many others worked with them to make life on the ward more bearable and perhaps the most inventive were the play leaders who found something to make even the sickest children smile. If a boy or girl was lying in bed and crying, a play leader would slide wax paper under their cheeks to catch their tears and show them the pattern they had made on the paper – a spidery trail of drops and wiggling lines to make them smile – or if a child was too weak to move, they would make a shape out of play dough and put it into their hand so their fingers could curl around it. They seemed to possess a never-ending treasure chest of ideas to help children smile and Hannah always looked forward to their visits.
There was one in particular though who could always make her laugh and Hannah’s favourite game with Sarah involved dipping sponges into water before lying in wait for a doctor to pass the bed.
‘Go on!’ Sarah would shriek and Hannah would toss the wet sponge at the unsuspecting passer-by.
‘You got me again!’ the doctor would exclaim with a smile as the missile hit him or her and Hannah started to giggle.
But the one thing she didn’t want to do even with Sarah was talk about her treatment. Although the play leaders had dolls with miniature drains and drips to help the children understand their treatment, the only person Hannah spoke to about it was me and as she remained in remission, her inquisitive nature began to show itself once more.
‘Why are they cleaning my wiggly again, Mummy?’ she’d ask as the nurses flushed out her central line which had to be done every day to ensure the site was kept completely sterile.
‘To make sure there are no bugs, Han.’
‘Like the bugs in my blood?’
‘Different ones, but we don’t want any kind of bugs to hurt you.’
She was also becoming increasingly impatient when blood was taken from her thumb on every visit to the weekly clinic where in-patients and children who were being treated for leukaemia at home were seen. Unlike the routine blood tests which were done each morning using a syringe in her central line, this one involved making a knick on the pad of her thumb with a small blade before a nurse squeezed long and hard enough to collect a few millilitres of blood. For a long time, Hannah didn’t say anything about it until one day we were sitting on her bed.
‘Mummy?’ she asked.
‘Yes, Han.’
‘I’ve been thinking. I’ve got my wiggly in my chest and I know they can take blood out of that, so why do they need to use my thumb too?’
‘I think it’s because they need special blood from the edges of your body and not blood that’s from near your heart,’ I replied.
Hannah didn’t say anymore but firmly refused to have a thumb test done when we next went for one.
‘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,’