Saving Zali
Page 1
About Saving Zali
Saving Zali is a mother’s account of every parent’s worst nightmare: a diagnosis of cancer with a shocking prognosis.
In 2009, Lisa and Andrew Venables were told that their eighteen-month-old daughter Zali had Langerhan’s cell histiocytosis, or LCH, a cancer resistant to chemotherapy and almost impossible to treat. Zali was given six weeks to live.
It was the beginning of a journey of heartache and bravery as Zali battled daily for her life in Sydney’s Westmead Hospital, with Lisa by her side at every step.
Although Zali survived her original prognosis, her condition worsened dramatically. Her medical team ran out of options. Lisa and Andrew were told their daughter had hours to live. But then a controversial treatment was proposed, a treatment never before used for Zali’s condition. What happened next was a medical miracle that proved that the extraordinary is possible.
Heartfelt and beautifully told, this is the story of medical dedication, a child’s tenacity and a mother’s love.
LISA VENABLES
Saving
Zali
Contents
Cover
About Saving Zali
Dedication
Foreword
Prologue
Chapter One
Chapter Two
Chapter Three
Chapter Four
Chapter Five
Chapter Six
Chapter Seven
Chapter Eight
Chapter Nine
Chapter Ten
Chapter Eleven
Chapter Twelve
Chapter Thirteen
Chapter Fourteen
Chapter Fifteen
Chapter Sixteen
Chapter Seventeen
Chapter Eighteen
Chapter Nineteen
Chapter Twenty
Chapter Twenty-one
Chapter Twenty-two
Chapter Twenty-three
Chapter Twenty-four
Chapter Twenty-five
Chapter Twenty-six
Chapter Twenty-seven
Chapter Twenty-eight
Chapter Twenty-nine
Chapter Thirty
Chapter Thirty-one
Chapter Thirty-two
Chapter Thirty-three
Chapter Thirty-four
Chapter Thirty-five
Chapter Thirty-six
Chapter Thirty-seven
Chapter Thirty-eight
Chapter Thirty-nine
Chapter Forty
Chapter Forty-one
Chapter Forty-two
Chapter Forty-three
Chapter Forty-four
Chapter Forty-five
Chapter Forty-six
Chapter Forty-seven
Chapter Forty-eight
Chapter Forty-nine
Chapter Fifty
Chapter Fifty-one
Chapter Fifty-two
Chapter Fifty-three
Chapter Fifty-four
Chapter Fifty-five
Chapter Fifty-six
Chapter Fifty-seven
Chapter Fifty-eight
Chapter Fifty-nine
Chapter Sixty
Chapter Sixty-one
Chapter Sixty-two
Images
Acknowledgements
About Lisa Venables
Copyright page
To my husband and precious children. I am grateful to have
you every single day, and to Sleeping Lyons who are
much braver than they should ever have to be.
Foreword
Saving Zali is the harrowing journey of a toddler with a rare, life-threatening disease and the specialised medical team that fought to save her. It is also an account of the emotional trauma experienced by Zali and her family as her life and death struggle unfolded in the Children’s Hospital at Westmead, Sydney, over those first few exhausting days that extended to weeks, then months.
Zali’s condition was called Langerhan’s cell histiocytosis (LCH), and the subtype that Zali experienced was Letterer–Siwe disease, a condition associated with a high death rate. Even specialists working in the field of paediatric immunology or paediatric cancer are unable to say with certainty whether this disease is actually a type of cancer, an immunological disorder or a bizarre response to infection or a combination of all three. Neither Zali nor her family caused the disease and nothing that they did or didn’t do contributed to her developing the illness. Saving Zali provides a glimpse of a comprehensive world-class medical system struggling to find its own understanding and therapeutic direction in these enigmatic conditions. Modern conventional medicine is based on rational and evidence-based decision-making grounded in science and biology. Our understanding of Langerhan’s cell histiocytosis betrays any such sophistication. Saving Zali exposes the limitations of a technologically advanced practice of modern medicine and is a demonstration of the importance of close collaboration, trust and honesty between parents and a broad range of multidisciplinary professionals, including medical and nursing staff, with no one person holding the key to Zali’s survival. Her story is a reminder in the world of modern medical practice that technology, research and scientific discoveries are only a few components of a complex therapeutic puzzle that also involves intense human values such as trust, persistence, respect and honesty. Zali’s recovery reminds us in the medical community not to give up, to keep trying new treatments and that patients like Zali may turn a corner and recover. Our understanding of disease is imperfect and we must continually update our experience. As a result of Zali responding so well to the treatment, 2-CDA is now more commonly used in LCH. There is hope of better treatments and higher survival rates for desperately ill children like Zali.
Saving Zali is a remarkable story from the heart of a mother who travelled a dark path and learned much about herself, the strength of her family and the resilience of her beloved daughter. Attempting to understand and support Zali through a condition that baffled even specialist doctors with its complexity and unpredictability was a hard road for both Lisa and Andrew. The course of treatment was uncertain and the chances of survival grim. This is a story of the strengths, weaknesses and limitations of modern medicine and the breakthroughs that can happen when they are least expected. Lisa Venables takes her readers on a journey that may fascinate and terrify, but one that no reader will ever forget.
Stewart J Kellie
Clinical Professor
Senior Staff Specialist – Department of Oncology
MBBS, FRACP, MD, MIntPH(Hons)
Craig F Munns
Associate Professor
Staff Specialist – Endocrinology
MBBS, PhD, FRACP
Children’s Hospital at Westmead
Sydney, Australia
Prologue
I sprinted through the Gosford Hospital car park with my toddler Zali in my arms. My eleven-year-old son Lachlan, Zali’s half-brother, tried to keep up with me, confused and out of breath. I waited impatiently for the doors of Emergency to open. It was just after lunch on Saturday 2 May 2009, the start of winter.
The Emergency waiting room was busy. It smelt of alcohol, sweat, poverty, musty old person and vomit. There were kids crying and adults whingeing. Lots of people with sports-related injuries were waiting to be treated.
The nurse in triage was shocked by my appearance and stopped what she was doing.
‘What’s wrong?’ she said.
I started sobbing. ‘My neighbour is a paediatric nurse and she told me to bring Zali to the hospital right away. She’s had fevers every four hours that don’t seem to be related to anything, and for the last ten days she’s had this rash on her hand. I think something’s really wrong.’
I showed th
e triage nurse the pale red spots on the palms of Zali’s hands. That seemed to be all the information she needed. She took me in straight away. She got a brief history from me, looked at the cradle cap on Zali’s head, the nappy rash in her groin and her swollen belly. I told her we had seen two paediatricians because Zali was constantly sick but that nobody could work out what was wrong. She just nodded and I felt like she knew something I didn’t. I wanted to grab her by her thin cotton shirt and shake her until her head wobbled. Until she told me. Until she fixed it.
‘Just fix it!’ I wanted to scream into her helpful face.
We were taken around the corner into the children’s section of the Emergency Department, where happy murals are painted on the walls and there is not so much medical equipment on display. A young friendly nurse came over and told me she would need to take a blood sample from Za. We had done a few of them lately at various pathology places but none of the tests had been able to identify what was wrong. I knew from those experiences that it was very hard to take a sample from Za as she was constantly dehydrated.
I wrapped her up tightly in a blanket like a newborn, except for one arm. I cradled her against my body and held her arm out for sacrifice. The lovely nurse took a long time and a lot of jabs before she could find a vein to take a sample from. It was awful. Zali screamed and twisted and cried. She begged me with her eyes to help her and tried to cling to me and pull away from the nurse but couldn’t because the blanket bound her. I was distressed and started crying too as I tried to reassure Zali that it was okay and it would be finished soon.
The nurse was dissatisfied with the amount of blood she could get for the sample, saying it was very sticky and she couldn’t get much. I didn’t know what that meant. Wasn’t blood supposed to be sticky? I wasn’t going to let her have another go at it and I told her so. That was the bottom line for me. This was hurting Zali too much. They would have to find a different way to work out what was wrong.
Shortly after, a doctor came and told me that because we had seen the paediatrician Dr De Courcy privately and he was on call that day, they would wait for him to talk to me about the blood test results. I was impressed that they could already tell what was wrong with just a blood test but was annoyed they weren’t telling me. I assumed that because they were waiting for Dr De Courcy it wasn’t anything urgent and he would be able to sort it out.
We had seen Dr De Courcy about eight months earlier, while our usual paediatrician had been on holiday. Dr De Courcy had ordered blood tests and the results had pointed to leukaemia. At the same time, Zali became very ill, so he admitted her to Gosford Hospital straight away. Not long after arrival at the hospital we were transferred back to our original paediatrician, who had now returned from holidays, and he didn’t think leukaemia was an accurate diagnosis. He thought it was lactose intolerance and gave Za enough blood transfusions to bring her results back to normal. We were grateful to be off the hook so didn’t push it any further.
Perplexed and feeling a little condescended to, I settled Zali down for a rest in my arms while Lachie became glued to the TV. My screaming fear had settled to a gnawing concern that was manageable. The staff appeared to be putting Zali’s story together with the information they had gathered from the blood test. Breathing deeply, I tried to calm myself.
We were put into a room for ‘privacy’ and I wondered what we needed so much privacy for. I didn’t care if people recognised me as a cop there. I could handle myself. My acerbic tongue usually did most of the hard work.
The room was a generous size, with several chairs for Lachie, me and Andrew, my husband, Zali’s father, who had now arrived from some medical appointments of his own in Sydney. Andrew was a bit flustered. It had been a long drive from Sydney to get back home as quickly as he could, and it had been hard to find a parking spot. We thought we would find out what was wrong then go home, so he had taken a place in one-hour parking.
We both had that horrible underlying feeling that something was wrong but tried to convince ourselves that surely it couldn’t be too bad. The door of the room had been closed but the nurses kept looking at us through its large glass pane. Lots of nurses observed us through the window. Something was up. I questioned everyone who came close to us about what they knew. Only one nurse answered, and she told me they had the results of the blood test but would wait until Dr De Courcy spoke to us.
Another Emergency Department doctor came and talked to us, asking about Zali’s symptoms. We went through the list of problems. As we did, I tried to identify from his words and facial expression the magnitude of the problem. It was part of my job to assess what people were thinking or going to do. I was pretty good at it. I couldn’t tell what this man was thinking, though. He showed polite interest in Zali’s rashes and her lack of sleep but was very interested in her problems with thrush and colds. Colds didn’t seem to be a big deal to me; the lack of sleep was more difficult. A steady stream of doctors came to look at her after that, each one with a careful poker face. Nobody really examined her closely, or touched her. We questioned them. They questioned us.
Finally, Dr De Courcy came into the room. Another doctor and a nurse flanked him. I was irritated. None of them shook my hand. I could see that the other doctor was here to learn how ‘this’ was done. I didn’t want to be a learning exercise. They should have had more respect for me than that. What was ‘this’? It was a bit unfair that they knew what was wrong with my daughter and I didn’t. I just wanted him to tell me so I could go. Stop being so dramatic and get to the point. We were sitting down. I stood up as he entered. I was keen to push him to answer me.
He told me to sit and I did.
Dr De Courcy is a nerdy-looking guy. He is tall, with a medium build, grey curly hair and a large nose. He’s also very pale, probably because he spends a lot of time in the hospital. He wears glasses and looks at the floor a lot, which makes him look like he’s thinking or listening. When he talks he raises his head only slightly. This time he looked up through the top of his glasses. He seemed soft, but as we learnt, he is familiar with dealing in the tough stuff. He is much stronger and harder and more insightful than I then gave him credit for.
He looked me straight in the eyes, and didn’t flinch with the directness of this approach. Usually, I took this to mean an offender was thinking about attacking me. I braced myself. My breathing quickened. Adrenalin pumped. I was ready to jump up and take action.
He began, ‘As you know, last time I saw Zali I thought she had leukaemia.’
I nodded, as there was no chance to forget that horrible week eight months earlier. I started blathering information to Dr De Courcy. I could feel a large storm cloud gathering and I didn’t want it to rain on us.
‘The low blood counts were because of the blood in her poo caused by intolerance to cow’s milk. The nappy rash was nothing to worry about and the cradle cap comes back sometimes but goes away again. Maybe it was just a form of eczema or something.’
He pressed on, unfazed by my attempt to divert him. ‘Well, I think Zali has leukaemia. She’s very unwell. Her blood counts are extremely low. She has nearly no blood to take for a sample. She’s very dehydrated and has no immunity at all. You’ll need to start treatment immediately. I’ll transfer her to the Children’s Hospital at Westmead today.’
I asked him what that meant. How sick was she? Leukaemia?
He told me she was extremely sick. During the next twenty-four hours to six weeks we would see which direction this would go.
‘Twenty-four hours?’
He looked me straight in the eye again and said, ‘Yes. Twenty-four hours. She’s very sick. If she does live, the treatment over the next six weeks will tell us which direction this is going to go.’
‘Fuck,’ I whispered.
My stomach dropped like I had plummeted down a track on a roller-coaster. I sighed one big ‘Oh no’ and deflated further into my chair.
Andrew groaned, ‘Oh God, no, no, no, no,’ and his large, strong should
ers shook with sobs. I felt grief well up in my ribs and throat in a giant moan. I held Andrew’s hand and we cried while Zali lay wrapped up in my arms asleep and Lachlan stood next to us confused. I had to explain to Lachlan what this meant.
‘It’s cancer, honey. She might not be alive tomorrow.’ He started to cry too as I wrapped my other arm around his skinny hips and pulled him in for a hug.
The doctors left us alone. We needed some privacy.
On Saturday 2 May 2009, Zali was eighteen months old and we only had twenty-four hours left with her.
Chapter 1
After finishing my Bachelor of Arts, I joined the NSW Police in 2000 to get out of Canberra, where I grew up. I had failed the public service test and wasn’t qualified in any career as such. Policing is a family trade and so it was an obvious second choice.
My beloved grandad Neville was the first officer to create the Queensland Drug and Alcohol Testing Unit, using his previous experience as a chemical engineer to get it started. His grandfather, Detective Albert Jesse Merry, created the Naval Intelligence Unit during World War I, which was later divided into Naval Internal Affairs and Naval Intelligence. He then went on to become Staff Sergeant in the Canadian Military Police specialising in undercover work and intelligence. Albert Jesse’s grandfather was a lock-up keeper in England. (Lock-up keepers are police who live in a town and agree to be available all the time.) My dad has a law degree, my mum was a civilian in the Queensland Police, and my cousin is married to a police officer in Queensland. Law and the pursuit of criminals runs in my family.