Memories and emotions relating to my brother, Rob, have been flooding back this week. I’ve been reading Hannah’s Choice by Hannah and Kirsty Jones (assisted by Megan Lloyd Davies), a book I’ve had on my wish list for ages but only just recently bought. I read it in one sitting, and then I dug out the letters Rob wrote to me at the time of his illness, and read them again too.
In 1997 Rob was diagnosed with leukaemia. And in the ensuing months he faced some of the biggest questions of his life. Should he go for potentially dangerous treatments – chemotherapy, bone marrow transplant – or not? When one course of action failed should he go back for more? As a fully competent adult in his forties, he was very aware of the relative risks and consequences of the different options. There were no easy answers. Decisions he made would have implications, not only for him personally, but for his young family too. I knew those risks intellectually, but even so I was unprepared for the emotional impact of accepting his choices and then seeing him develop serious complications and battle for his life. I often asked myself, what would I have done in similar circumstances?
But imagine weighing up such risks and benefits not for yourself but for your child, a child who is not yet a teenager. And then imagine if she resolutely maintains she wants to make her own decisions … but her choices don’t square with yours. That’s Hannah’s story.
I well remember the furore raised by her personal decision not to have a heart transplant, which hit the headlines in 2008. Her choice sparked a vigorous debate about a child’s right and ability to make a life-or-death decision. I was much exercised by the arguments at the time, but somehow I’d either missed or forgotten (not uncommon these days!) what happened after she went home to die, so the ending of the book came as a surprise to me. In case you’re in the same position I won’t spoil it for you.
Hannah faced not one but two life-threatening illnesses: leukaemia when she was four years old, severe heart disease (cardiomyopathy) subsequently. The firsthand account of her treatment makes harrowing reading and reminded me vividly of the agonies my brother endured.
‘Hannah started being sick up to six times a day and had terrible diarrhoea. Her fingernails and toenails had also fallen out to reveal raw red nail beds which I dressed each day with tiny pieces of paraffin gauze which had been chilled in the fridge … She also needed gauze pads placed under her heels, shoulder blades and bottom to stop sores developing because her skin was peeling – the new skin so painful that she had to be handled like a burns victim. For several days we could hardly touch Hannah because she was in too much pain, and even her mouth bled – blood caking her gums, teeth and lips which I tried to wipe gently away.
As I did so, I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain, and although I wished I could feel it for her, I couldn’t.’
The price paid is indeed high. And there are no guarantees.
Hannah grew to hate hospitals. And she hated being treated differently. She didn’t want the ‘Chitty Chitty Bang Bang looks’; she wanted to be told off when she was naughty; she desperately wanted to be ‘normal’. Meeting other children with limited life expectancy she said: ‘… we talked about the here and now, not the future, and that’s what I like to do – take every day as it comes, which means you mostly enjoy them instead of worrying.’
Sadly, early into her treatment things went unexpectedly and badly wrong. After two of the recommended six rounds of chemotherapy to treat her leukaemia, Hannah’s heart became seriously damaged by the toxic drugs – a very rare side effect. Now her parents were faced with an even more stark choice: stop the chemotherapy and risk the cancer returning, or continue with treatment but risk further damage to the heart.
‘How could Andrew and I decide to stop the treatment that was meant to be saving Hannah’s life? But how could we continue the chemotherapy knowing we might risk Hannah’s health in another way? Surely it was an impossible choice?’
A compromise was reached. Hannah had one more round of chemotherapy. The leukaemia didn’t return but the heart problems increased. Her kidneys started failing. She was a desperately sick girl. As she deteriorated her only hope was a heart transplant. By now though, Hannah was herself older, 12, then 13; she had her own views. She’d grappled with illness since she was four, she’d spent much of her life in hospital, she knew pain intimately. And she knew she did not want to remain in hospital; she did not want a heart transplant. She wanted to go home, to be amongst those she loved, to enjoy the simple pleasures of childhood while she could. As she was quick to clarify, she wasn’t asking for the ‘right to die’, but for the right to live her life in the way she wanted – at home with her parents and her siblings.
Her parents showed amazing courage. In spite of criticism, they listened to their daughter, they respected her opinion.
‘… I’d learned that children who have felt death whisper at the edges of their world can become wise beyond their years.’
‘Her gaze was that of an old soul, staring out from a child’s face. It was the same look she had given me a long time ago when she had fought for her life the first time, and in moments like those I understood that Hannah had been to places I could never know.’
Whatever her decision, they told her, they would support her. Indeed Kirsty, her mother, an experienced nurse herself, went further. This journey alongside Hannah had taught her powerful lessons about life and about parenthood, she said.
‘I remembered the moment she was born, the feeling of the tears slipping salty down the side of my face as I held Hannah for the first time. Back then I’d known how lucky I was to have her after waiting for so long. But it was only now I knew for certain that she was not mine to keep or lose: Hannah, like every child, was a gift, not a right. I must cherish her for as long as she was mine.’
But a locum doctor couldn’t accept Hannah’s decision, and he set in train a course of action that added considerably to the strain the family were under. Hannah was threatened with a court order to remove her from the custody of her parents and force her to have the operation. She was required to make her case alone to a child protection officer.
However, whilst there were plenty of strangers who disapproved of their choices and had no hesitation in saying so, the Jones family were supported strongly by the healthcare professionals who had known them throughout the years of their ordeal. Hannah herself, though she hated being in hospital, found peace and comfort in a children’s hospice. When she heard about MPs fiddling their expenses, she drew up a list of things she’d do if she were Prime Minister. Top of her list was: ‘Make the government pay for children’s hospice care like Acorns because they don’t and I think that’s really bad.’
Out of the mouths of babes …
This book is an amazing story of courage and love. And challenging. Would I have had the strength to let my own child of 13 decide to forgo the one treatment that offered hope of a 15th birthday? I don’t know. How can we know until we’re faced with such a situation? But having read this book I have nothing but admiration for the pathway this family chose.