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

my bedroom so if I try to keep something secret they’ll always find it. Phoebe is also in and out all the time and if I’m feeling tired I just want her to leave me alone even though I know she doesn’t understand. When I’m really ill it’s as much as Mum can do to get her to come down the stairs in the morning without screaming, and so it’s not surprising that she doesn’t get it when I’m just ordinary ill.

      Being on my own again means I’ve got lots of time to think and I’ve been wondering why people are still so interested about me not having the transplant. Sometimes I get sick of talking about it because I think there are other more important things to say. But everyone went mad when they found out about my decision after a newspaper did a story about it. That was last year but journalists still ring up to see how I am and ask the same things over and over again. Why didn’t you have the transplant? What made you decide not to? Will you reconsider? One even asked me once how I wanted my funeral to be. Questions like that annoy me. I’m thirteen and I’ve had to talk about dying. It’s not that I hate mentioning it but I don’t like going on about it. No one does. I can talk about it to a certain extent but then I go quiet.

      I just wish people would accept that I don’t want the transplant. I want to be at home even though I know the doctors have said I won’t get better. It was a big decision but I wanted to make it even though I felt scared and sad and anxious all at the same time. Mum and Dad said they’d choose for me if I wanted them to but I didn’t because I knew they might feel guilty if something went wrong. It was my decision. No one else’s. And I made it for the right reasons.

      Now the summer term at school has started, I’m looking forward to September because I hope I’ll be well enough to start Year 10. It’s scary because it only seems like yesterday that I was in Year 7. I’ve already picked my GCSEs and I’m doing the five main subjects plus ICT and something else I can’t remember. I’m trying to do a bit of everything because I’m at a crossroads about jobs and need to learn as many different things as I can. At the moment there are three jobs I’d like to do: mostly I want to be like Cheryl Cole but I also want to be a fashion designer and make pink clothes because there aren’t enough of them, or be the boss of a company like Alan Sugar in The Apprentice – really rich and in charge of everyone.

      To keep myself lazy busy now I’m home and everyone else is back at school, I’ve been watching my new favourite film – Mamma Mia! It’s brilliant, cool and fab all at the same time. I like the dancing and the jokes but most of all I love the singing and can’t decide which is my favourite song. It’s great when the lady sings ‘Does Your Mother Know’ to her boyfriend on the beach, but I also like ‘Honey Honey’ because it always makes me laugh when Sophie sings ‘You’re a doggone beast’ and giggles.

      The songs are cool and I’ve been sitting in my room reading the words on the CD cover and singing along. Sometimes I get up and dance a bit too. Head banging is my favourite thing because it makes me feel dizzy, although I sometimes have to sit down if I do too much. But it feels great while I’m doing it, and that’s what counts, isn’t it?

      Of all the systems, processes and cycles that make up the miracle of human life, perhaps the most amazing is the heart – the power house of the human body which keeps the brain and organs fed with blood. An adult heart beats on average between 60 and 100 times every minute of every hour, day, week, month and year of a person’s life, however long – a feat of natural engineering that has never been surpassed by the bridges, rockets or machines built by people.

      Since New Year we’d known Hannah’s heart wasn’t pumping as effectively as it should have been. But as time had passed it had become increasingly clear that the problems were not being solved by medication. Hannah was still tired, weak and out of breath – the classic symptoms of heart abnormalities – and I was terrified when the doctors told me she was suffering mild heart failure. I tried to stem my panic by telling myself the term was a catch-all which covered a huge range of possibilities from sudden, severe and fatal heart failure to temporary symptoms from which a patient can recover. Heart failure can mean anything from a weakening of the muscles of the heart to a virus which disrupts its electrical signals or a glitch in one of the valves. No one knew what was causing Hannah’s problems and I simply didn’t dare consider they might be anything other than temporary.

      But as she rested after her second round of chemotherapy, Dr Williams and her cardiologist Dr Wright decided they needed to do a more in-depth scan to give them a fuller picture of what was happening. Hannah had had scans including ECGs to measure the electrical activity of her heart and mini echocardiograms which used sound waves to create a picture of it, but now the doctors needed to know more.

      ‘Is my heart still poorly, Mummy?’ Hannah had asked when I told her she was going to have a special X-ray.

      ‘The doctors aren’t sure so they want to look very closely,’ I told her.

      ‘Has my heart got bugs like my blood?’

      ‘We don’t think so, but Dr Wright will use his special machine to find out.’

      ‘Will he make my heart better?’

      ‘I hope so, Han.’

      A couple of days later we were taken to the X-ray unit, where Hannah lay on a bed as Dr Wright smeared gel onto her chest before pushing a probe across it. Working around the central line coming out of her chest, he guided it until a picture appeared on the monitor beside Hannah’s bed. Before now the scans had only contained blurry outlines and shadows but this one was giving us a far more concrete image of what was happening inside Hannah’s body. Andrew stood close to me as we watched her heart expanding and contracting, the blood rushing in and out of it in waves of blue and red across the screen.

      Pressing buttons as he moved the probe across Hannah’s chest, Dr Wright freeze-framed images to take detailed measurements. Lines and shapes, trapezoids and rectangles appeared on the images to give an exact assessment of Hannah’s heart rate and function. Numbers popped up on the screen and I stared at them, willing the figures to give us good news, praying that it wouldn’t be bad.

      When the scan was over the doctors went away to talk before calling Andrew and me back to see them. Their faces were serious as we sat down.