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

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

Kirsty Jones

The moving and inspirational true story of one little girl's battle against the medical odds and a mother's unwavering love for her daughter.'If I could have any wish it wouldn't be a part in High School Musical. I'd like to live just one day without having to rest when my heart gets tired: I'd just waste my energy, doing stuff with friends. But I can't and feeling unhappy about it is a waste of time. Being happy gives me energy - so much so that sometimes I want to do a cartwheel even though I can't actually manage it. My decision wasn't about dying. It's about living.'When her daughter Hannah was only four years old, Kirsty Jones received the news that no mother ever wants to hear. Her little girl had leukaemia. But Kirsty knew that Hannah was a fighter, and after gruelling chemotheraphy she beat the disease. But there was more trauma to come: the chemotherapy drugs had damaged Hannah's heart.At first, doctors hoped that Hannah's body would compensate for the damaged muscle, but when Hannah was only twelve her heart failed without warning. As her life hung in the balance, Doctors advised that Hannah's only chance of survival was a heart transplant, but the operation was very risky and the anti-rejection drugs might bring back the leukaemia.Kirsty knew one thing: Hannah deserved to decide her own destiny. Wise beyond her years after learning to cope with so much, Hannah made her choice: she did not want the transplant. She'd had enough of hospitals and wanted to be at home with her family.Then in July 2009, the right side of Hannah’s heart completely stopped working and her kidneys started to fail. Days later Hannah celebrated her 14th birthday – a milestone she was never expected to reach – and Hannah was ready to make a different choice. She agreed to have the transplant.Now Kirsty and Hannah tell their unique story and, with wit and honesty, their interweaving voices describe how facing and overcoming death has taught them so much about living. Filled with wisdom and grace, tears and laughter, Hannah's Choice is about beating the odds and finding joy in each day.

Hannah’s Choice

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

Hannah & Kirsty Jones

To all the staff on the paediatric ward at Hereford County Hospital

Table of Contents

Cover Page (#u92a92b31-90c2-54f3-84bf-48f5743e34c8)

Title Page (#u18a4caeb-d795-5617-8544-4c73febf5c7b)

Dedication (#u3ff5ecd4-de59-5350-9edc-61714395f5b2)

CHAPTER ONE Seize the Moment (#ue599731d-61c6-5fcc-88fb-dfac1dd84138)

CHAPTER TWO Precious Time (#u27efe17c-15ae-5494-88dc-a023c2f84782)

CHAPTER THREE Not Ours to Keep (#u4686baea-fb70-55d8-b4f9-7536a17b2c8b)

CHAPTER FOUR Look for the Love (#litres_trial_promo)

CHAPTER FIVE Magic in the Air (#litres_trial_promo)

CHAPTER SIX Live the Life You Love (#litres_trial_promo)

CHAPTER SEVEN Everyone is Equal (#litres_trial_promo)

CHAPTER EIGHT The Right to Choose (#litres_trial_promo)

CHAPTER NINE Face Your Fears (#litres_trial_promo)

CHAPTER TEN Know Your Strength (#litres_trial_promo)

CHAPTER ELEVEN The Gift of Life (#litres_trial_promo)

CHAPTER TWELVE A New Beginning (#litres_trial_promo)

Acknowledgements (#litres_trial_promo)

Copyright (#litres_trial_promo)

About the Publisher (#litres_trial_promo)

CHAPTER ONE Seize the Moment (#ulink_7613ed54-a0f8-51e7-a4b6-dfc2ac99cfe5)

Hannah

So what are the really important things you need to know about me? Well, first there’s the fact that if I ever have a boyfriend I want him to look like Zac Efron. At the moment, though, I don’t want a boyfriend. My friend Simone has one called Tiago and we’ve nicknamed them Barbie and Ken. But I’m not interested because I don’t want anyone tagging onto me. I’ve got more important things to do.

Simone is one of my school friends and the others are Laura, Becky, Kelcea, Brigitta and Zoe. They’re all nutters and we’re always in touch, even though I don’t see them much because at the moment I’m not well enough to go to school a lot of the time. When I’m at home, though, they message me to find out how I am or to tell me what’s happening because there’s usually something going on – like when two of them once stopped speaking and I just wanted to bang their heads together. But I had to wait until I got back to school and by then they’d made up again. Mostly, though, we all get on really well and do girly stuff like trying out makeup on each other or having sleepovers. Once I stayed up until 11 p.m. on a school night and felt like a zombie the next day.

Then there’s my family. First off is my dad Andrew, who’s forty-three and really big and round so you get better cuddles. Mostly he smiles and is always winding me up by making jokes. But sometimes he blows his top when he gets angry and shouts the house down so we have to leave him alone until Mum speaks to him and puts him on the right path again. That doesn’t happen often, though, because he’s usually in a good mood. He’s a really nice dad.

My mum Kirsty is forty-two. Small with long red hair, she has twinkly eyes and loves horses almost as much as she loves my brother, sisters and I. She’s a really good mum and on the days I’m feeling well we’ll do things like bake cakes and biscuits. But if I’m feeling tired we’ll stay quiet and she’ll sometimes even go to the shop to get me juice and magazines. The best thing she did recently, though, was deciding to have a week when we didn’t answer the phone. Our house can get really busy sometimes and I just wanted it all to slow down because I felt so tired. That was when Mum took the phone off the hook and I really enjoyed it.

Then there are my younger brother and sisters. First comes Oli, who’s twelve and will hit you if he’s in a bad mood. But if he’s in a good one he’ll help you get past the really hard levels on your Nintendo DS – sitting there for ages working out how to get past obstacles or putting in cheat codes if he can’t – which I really like. Mostly Oli is quiet and shy but he’s chatty with me when he wants to be.

Next comes Lucy, who’s ten. She’s outgoing, always wants to beat everyone to be the best and is almost as horse-mad as Mum. In fact she’s so good at show jumping that she’s hoping to go to the Olympics some day. She goes away a lot because she competes in shows at weekends and I miss her because I can’t go. There’s no heating in the horse trailer and I’d get too cold if I did, which isn’t good when your heart is bad.

But when Lucy is at home we talk about horses all the time – sitting and looking at pony magazines and deciding which ones we’d buy if we had loads of money – and I love it when I do get to go to shows with her because we eat loads of burgers. I’ve tried riding myself but I’m scared of heights and have a weak ankle which isn’t a good combination to have on a horse.

Finally there’s Phoebe, who’s four and wild. Mum sometimes says she could swear she was given the wrong baby at hospital because Phoebe will run round the house again and again and never get tired. She goes at fifty miles an hour – banging the lounge doors so you know where she is – which is amazing because when she was born she weighed less than two bags of sugar and now you couldn’t miss her. Phoebe also loves riding, but while most girls her age have a leading rein she doesn’t have one because she’s so brave. She’ll always put up a good fight with me but she’s kind too and will share her chocolates or give me a one pence piece which she thinks is a lot of money.

Then there are our animals, and there are lots of those. We’ve got a dog called Ted, a cat called Tails McFluff, some goldfish (although Tails ate some of them once) and ponies called Roxie, Buddy and Mr Minty for Mum, Lucy and Phoebe to ride. We also have chickens for eggs but aren’t allowed to play with them because we put one on the trampoline in the garden once and laughed as it bounced up before flying away. Mum really told us off so we knew we couldn’t do that again.

Then there’s me. I’m thirteen and I don’t spend nearly so much time running around as Oli, Lucy and Phoebe because I’ve got a bad heart and get tired easily. That’s why I only go to hospital school in the mornings and then come home at lunchtime to rest. I also spend a lot of time in bed because I pick up any little infection going like colds or stomach upsets which can get really boring because when I feel really ill my energy goes and all I can do is lie quietly.

But when I get well I get busy again, although I call it ‘lazy busy’ because I can’t run around or climb trees. Instead I do stuff like reading, going on my laptop, watching TV or playing DS in my bedroom. I’m lucky because it’s my favourite place in the world, all pink with a four-poster bed, and my room at Acorns, where I go once a month, is cool too. Acorns is a place where children who are really ill can have a rest.

The films I like are Enchanted and High School Musical even though I know it’s not cool for someone as old as me to enjoy films like that. So I don’t tell my friends, who are all into bands like Evanescence and Paramore, in case they think I’m babyish. But I prefer happy stuff and that’s why I like those films and the music in them. On TV I enjoy Lark Rise to Candleford and detective programmes like Poirot because I try and work out the case before the policeman does. I watch EastEnders sometimes too, even though Mum doesn’t really like me to, but not that often because the people in Albert Square are always having massive fights so it can get a bit predictable.

I also like The Apprentice when Sr’Alan tells the contestants where they’re going wrong, and Strictly Come Dancing. I love Anton because he smiles so much, and Brendan, who’s always going off in a major strop. Bruce Forsyth is really old but good and Tess is nice too, although she sometimes wears odd dresses. I prefer Strictly to The X Factor because the people don’t know if they can dance and some of them get really good while others are awful, whereas on The X Factor they know they can sing and just get better. The other thing I watch is Masterchef because it makes me laugh. Like the time when John picked up a piece of black salmon and said, ‘That’s one well-cooked piece of fish.’ What an understatement.

But maybe my favourite thing is a game called Boggle. It’s a box full of letters that you jumble up to make words and I love it because it feels like there are lots of them inside me which I can see in the game. That’s why I also enjoy reading because books are full of words you can lose yourself in. One I really like is Enid Blyton’s The Magic Faraway Tree. It’s for younger kids really but it’s great because it tells the story of a group of friends who climb an enchanted tree and find a different land at the top of it each time. So they visit places like the Land of Spells, where they accidentally make a child shrink, the Land of Magic Medicines, where they buy a potion for their mum who’s ill in bed, and the Land of Presents (that one’s obvious).

The place I like the sound of best, though, is the Land of Do As You Please where the children get to do whatever they want – like drive a train, ride elephants and swim in the sea. A lot of people think you stop having fun if you get sick, which means you never get to go to the Land of Do As You Please. But I know it’s not like that. Sometimes you have to have fun in a different way, but mostly you have it just like other kids.

It’s really important to have fun and I don’t understand the adults who think their life is really bad. You’ve only got one and if you don’t enjoy it then you’ve blown it, haven’t you? That’s why I always try to get to the Land of Do As You Please as often as possible (although it’s much easier with the help of a Nintendo or High School Musical DVD or something).

You see, if I could have any wish it wouldn’t be a year in Disneyland (although that would be nice) or a walk-on part in High School Musical (although that would be unreal). What I’d like is to live just one day without having to stop and rest when my heart gets tired: I’d go out and just waste my energy – visit Lucy’s horses, ping all over the place doing stuff with friends, dance to Mamma Mia!

But I can’t do that, and I’ve had to learn that feeling unhappy about it is a waste of time. Being happy gives me far more energy – so much so that sometimes I want to do a cartwheel even though I can’t actually manage it. So that’s how I try to feel each and every day, and I think I’ve always been like that. But I can’t really remember that far back, so Mum will have to tell you more about how everything started.

Kirsty

I don’t know how I knew it was the day on which our world would fall apart. Call it a mother’s intuition, my medical training or just luck, but that day in December 1999 I knew I couldn’t listen to another doctor telling me there was nothing wrong with Hannah.

‘I want a second opinion,’ I said to the young A&E doctor standing in front of me at Worcester Hospital.

Hannah was lying on a bed between us. She was pale and listless, so quiet. Not the bubbly, chatty four-year-old I knew so well. It was about 11 p.m. and she’d woken up a couple of hours before, crying and complaining of a tummy ache.