It took him a little while to get the hang of school again. Part of that was getting over the stress of everything that had happened, and just trusting that home life would be the same when he got home as when he left it to go to school. He goes to the movies, rides his motorbike, avoids schoolwork and hangs out with a great group of mates most Saturday nights at our house. He has broken his leg and arm courtesy of motocross, and his shoulder when he fell off his mountain bike going down a hill. After the initial pain of each injury, neither of us was too worried about it. We’re not afraid of hospital any more and Lach just gets the injury plastered and goes on his way. He recently got a job at the local McDonald’s and I am so proud of him for getting his life together so completely. He wants to be a mechanic in the army when he finishes school. He is a wonderful young man.
Danni came and lived with us for a year and started Year 10 at the same school Lachlan was going to. She made friends quickly and started working at the local McDonald’s. By the end of the year, though, she decided to go back to Cooma and her mum. Danni’s life with us was as different from her life in her home town as the ski fields near Cooma are from the beach. She’s happy in Cooma and is now finishing Year 12.
Kala finished Year 12 at Brent Street and went to New York for a couple of months to further study dancing. After New York she returned to Cooma, where she teaches dancing. She hopes to save enough money to go overseas again for more dancing opportunities. During that difficult time, music and dancing were what got her through. They are her life’s blood.
I left the police in February 2010 so I could stay at home and help rehabilitate my family. I had experienced a big physical, emotional and mental fright, and I simply didn’t have the confidence or inner resources left to deal with conflict any more. I didn’t feel safe. My internal feeling of security was gone and I needed to rebuild myself.
It took me about a year to get the hang of being at home. I felt really vulnerable and out of my depth at the start, and it’s trickier than it looks. I had no sense of calm, and it was vitally important to create that again for myself and my family. We all needed peace and security and I couldn’t create that while I was working.
Although I had a great time in the police, I’m glad I don’t do it any more. My life is too valuable to me and to those who depend on me to waste it on other people. I’m making a contribution to the family income the two days a week I do the books for Andrew’s business. The book-balancing and data entry are frustrating in the extreme, but I am very good at chasing late invoices. I have a certain quality that makes people decide to pay the bill where they previously thought they might not have to. I do the best I can, then it goes through a bookkeeper and then onto an accountant, so I don’t worry that I have done anything grossly incorrect. I have started working at Policelink, or Police 000 Emergency, as a call operator part-time to bring in some extra cash. It’s work I’m familiar with and it’s not too onerous.
At three years down the track I am content and happy in a way I never imagined I would ever be. I have a tight network of positive people around me who love and support me, and good friends who just make me laugh. The people I love are moving forward in their lives and are happy too.
I know how lucky I am. Believe me, I know. I think of it every day. The only side effects Za lives with are bad sleeping and hearing aids. The minor nature of these issues is entirely due to the care she received when the people in Westmead Children’s Hospital put themselves on the line and gave her everything. One time in Emergency I saw a sign on the wall that said international patients pay $2500 a day just for the room in PICU, not including nurses and medication.
I know how expensive her treatment was. I know that it took more than fifteen groups of people at the hospital working alone and together to bring her through. I was very lucky that so many people cared about my one little person.
I know we are lucky that we first got a Ronald McDonald room, then a Ronald McDonald unit. Some days they turn away upwards of thirty families. Imagine if my family hadn’t been with me going through that. I would have gone mad. Lachlan would have gone mad from the heartache of missing me. Andrew would have been beside himself with fear and worry. Kala would have been stuck in the middle of the men around her falling apart. We were so lucky to be together, as awful as that was sometimes.
I am grateful every day for my life and the luck we had of Zali living. There is no reason one child lives while another doesn’t. We were simply exceptionally lucky. I received a lot of kindness and generosity inside and outside the hospital, and ultimately that is what got us over the finish line.
Cutting the wedding cake. Andrew and I were married on 22 January 2005 in a beautiful ceremony at an historic house in Crookwell NSW. My son, Lachie, and Andrew’s daughters, Kala and Dani, were our bridal party and they choreographed and performed in the bridal waltz.
Baby Zali arrived in a hurry on 3 November 2007. From the first contraction to entering the world, Za only took an hour and a half to arrive! Andrew and I sped all the way to the hospital and she was born fifteen minutes after we got there.
Weighing in at five kilograms, Zali was larger than ninety-five per cent of her cohort. Andrew picked out her name – he just liked it.
Zali was a very restless baby and it was not uncommon for us to fall asleep upright.
Za loved to ‘wrestle’ with her big brother Lachie. As he was trying to escape, she would headbutt him when she tried to kiss him.
Zali was a beautiful baby whom everyone loved but she seemed to suffer endless minor health problems. I took her to the GP a lot and was constantly wiping her runny nose and trying to catch her up on sleep.
On 2 May 2009, we rushed an extremely ill Zali to hospital. After a week of tests, we were told our darling daughter had a cancer called Langerhan’s cell histiocytosis (LCH). Worse still, Zali had multisystem LCH in her bone marrow and histiocytosis in her major organs. The condition has a high death rate. Andrew and I were broken-hearted.
Zali’s doctor, Professor Kellie, prescribed a six-week course of chemotherapy. She suffered fevers, vomiting and diarrhoea during her treatment. I quickly worked out that stretch Bonds singlets were the only type of clothing Za could wear.
Despite being so sick and surrounded by medical equipment, Za still loved to play. She liked to watch Kala put her make-up on and thought she looked equally beautiful when her big sister put stickers on Zali’s face.
During those terrible weeks, I would spend up to fourteen hours a day in hospital, watching my little girl fight for her life. Even though she was attached to wires and tubes, I didn’t see them. Za was still alive despite the predictions and that was all that mattered to me.
At the end of the six weeks, Zali’s tell-tale rash came back. She was still sick. Luckily Professor Kellie had been researching an experimental chemo protocol that had never before been tried in Australia. It was our last hope.
Zali’s kidneys were not coping with the stress of the heavy chemotherapy and on 22 June, she went into septic shock. She was brought back to life three times. Zali was then placed in a medically induced coma and on dialysis.
On 17 September, Professor Kellie told us that the radical chemo had worked and Zali was cancer-free. But she was still very ill, with numerous life-threatening complications. A CAT scan revealed her heart muscle was calcified and hard as a rock. We were told there was nothing that could be done.
On 21 September, we were told that Zali would soon pass away. That day she was very carefully taken out of bed by two nurses so that I could cuddle her. It hurt us both and made me ache deep inside.
On the morning of 24 September, the doctors told us that each day we had Zali now was a blessing. We had run out of time. I felt that we should continue to carry her while her broken body rested. She just needed the tiniest bit longer to fight back.
On 24 September, Dr Munns, a mild-mannered genius, came to us with a solution for Zali’s heart
. That afternoon, he gave her a drug he believed would fix her. The next morning, in a miracle that amazed us all, she began to recover.
After 163 days in hospital, Zali was discharged. We still visited the hospital each day for various treatments during her recovery. Zali loved going for walks in her pram and we would wander for up to two hours every day. It was such a thrill to be able to stop and admire the flowers.
Courtesy of michael amendolia
On Zali’s second birthday, she was photographed to be the Bandaged Bear Ambassador for 2010. The disease had been beaten and the side effects were fading. On a child’s second birthday their physiology changes. Zali officially moved from an extremely vulnerable category to a less vulnerable category. It was like hitting the jackpot for us, and the first major milestone she had reached.
At the farewell party before returning to our family house on the Central Coast. After only a week or so after we thought we would lose her, we were told we would be able to leave hospital. Lachlan was so worried that Zali would get sick again and we’d have to stay longer at the hospital. Zali copied Kala all afternoon.
On 18 December, we were finally able to return home to the Central Coast after a long and exhausting journey. I felt very vulnerable to be going home without the nurses to hold my hand and help me. I wanted to wrap my family up in protective bubble wrap and never let anything hurt any of them ever again.
Dani and Za the afternoon Za’s central line (the tube used to administer drugs and treatments) came out. I couldn’t believe that after everything Za had been through, all that was left was a two-inch incision.
By February 2010, family life was returning to normal. Zali was even back to wrestling – Lach was actually lying on her ball. He copped a slap to the face after this photo was taken because he wouldn’t move.
Zali is now a happy, healthy five year old. She recently received an award for outstanding achievement in all Key Learning Areas and was Dux of Kindergarten.
Christmas holidays are best spent relaxing at the beach and wearing silly hats. I love overdoing Chrissie decorations and lights. There is so much to celebrate. A joyous loving family life and healthy children are my greatest treasures.
Courtesy of Kathryn Jewkes Photography
My husband and two precious babies, not such babies anymore! They supported and loved and held me while we went through hell. I am grateful every day.
Acknowledgements
Firstly, thank you to Dr Kellie and Dr Munns whose insight ultimately saved Zali. We are the luckiest people in the world to have been brought to a hospital where you both were. Thank you also to all the doctors, nurses and hospital staff I met or didn’t meet who worked together in an enormous team whose combined efforts kept us going for as long as we did.
Thank you to my husband and Kala and Lachlan. It was a long, tough road, and it certainly wasn’t pretty most of the time, but without all the big and little things we did for each other, our family would not have survived.
Thank you especially to Lachlan for forgiving me all my failures and for loving me for all my strengths. You have patience for mankind that could outdo a meditating Buddha.
Thank you to the friends and family who came and visited and the friends and family who helped us get going again afterwards.
Thank you to Irina Dunn who first took my tangled memories and helped me iron them out into a recognisable shape. Thank you to Ingrid Ohlsson who saw what I’d done and took a chance on this first time writer. Thank you to Sam Sainsbury who remained gracious when giving me the endless lists of things to fix up and encouraged me all the way. Thank you also to Deonie Fiford who gently told me where I needed to clarify my turbulent emotions.
A special thank you to the special Selwa Anthony. I nearly choked on my prawn salad the day you called and said you’d represent me. I am remarkably lucky to have been able to meet you. Without you there would be no book.
A special and final thank you to Zali. Thank you for holding on while us grown-ups got it together. Thank you for never ever giving up even when it would have been the easy and understandable choice, for having a body that did what it was supposed to do once the calcium was gone, and for recovering in such spectacular form.
And finally thank you reader for spending this time with me and reading my book.
About Lisa Venebles
Lisa Venables was born in Brisbane, Queensland and grew up in Canberra ACT. In 2000 she graduated from the Australian National University and moved to Sydney where she joined the NSW Police. Lisa left the NSW Police in 2010 and she now works for Policelink. She lives on the Central Coast NSW with her two children and her husband and loves every moment of their beachy lifestyle.
Some of the people in this book have had their names changed to protect their identities.
First published 2014 in Macmillan by Pan Macmillan Australia Pty Limited
1 Market Street, Sydney, New South Wales, Australia, 2000
Copyright © Lisa Venables 2014
The moral right of the author has been asserted.
All rights reserved. This publication (or any part of it) may not be reproduced or transmitted, copied, stored, distributed or otherwise made available by any person or entity (including Google, Amazon or similar organisations), in any form (electronic, digital, optical, mechanical) or by any means (photocopying, recording, scanning or otherwise) without prior written permission from the publisher.
This ebook may not include illustrations and/or photographs that may have been in the print edition.
Cataloguing-in-Publication entry is available
from the National Library of Australia
http://catalogue.nla.gov.au
EPUB format: 9781743517918
Typeset by Midland Typesetters
Cover design by Debra Billson
Cover images: Kathryn Jewkes
The author and the publisher have made every effort to contact copyright holders for material used in this book. Any person or organisation that may have been overlooked should contact the publisher.
Love talking about books?
Find Pan Macmillan Australia online to read more about all our books and to buy both print and ebooks. You will also find features, author interviews and news of any author events.
Saving Zali Page 26