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