Saving Zali

by Lisa Venables

  Our life was full of making a little bit of money go as far as possible, socialising in our community, and nurturing our family and home life. It was full of colours, seasons, varied temperatures, pelicans flying on warm air currents, the sound of rain in the tank, people we liked, people we avoided, the smell of the beach, the smell of our fruit trees. It was a full, multifaceted life.

  One morning Andrew came home from his night shift as we were all getting ready for school, child care and work. He should have been exhausted and ready for bed but instead he was wide awake and shocked. He looked pale and spoke almost robotically. He told me about an arrest he had been involved in the night before that had nearly gone very badly wrong. It was only pure chance that it hadn’t. I let him talk as he sat down for breakfast and a cup of tea. He talked continuously for about an hour, needing the constant reassurance of my support and a chance to calm down. When he finally finished shaking and some colour had returned to his face, he went to bed.

  After he went to bed, I called myself in sick and Andrew in sick for the next shift that night. We had reached the end of our ability to cope with PTSD without help. Though I didn’t know exactly what we could do or what help was available I called the Police Association and spoke to a wonderful woman, Sarah, who had all the answers and support we needed. The Police Association were the only people who would be able to stand between management and us so that Andrew could get help. It was obvious to her that Andrew had PTSD and was no longer fit to work for the police. Sarah told me how to apply formally for stress leave due to PTSD. They organised all the forms and leave. When Andrew woke up that afternoon I told him what I had done. While he had slept I had quit his job for him. He was very grateful and slept well that night for the first time in years.

  The combined effect of therapy, exercise, meditation and medication on Andrew cannot be overstated. Over the next few months he went to therapy sessions, sometimes five days a week, and he was able to rebuild himself gradually. The Andrew I got out of the rubble of ten years’ hard policing was a beautiful, kind man. He was gentle and loving. He was proud of me and our family, and there was nothing he wouldn’t do for us. He was soft-hearted and kind to his children and to Lach. His resilience under any pressure or stress was gone, though, and like anyone who has suffered a serious injury, most of his time was dedicated to recovery.

  As Andrew recuperated, he was able to look after Zali for one of my three days of work as we couldn’t afford three days’ day care now that he wasn’t working. The other two days she continued to go to Carissa. It was really difficult for him to look after Za, especially when she was sick or had fevers, but it was satisfying for him at the same time. She loved it when he put her on the bench and she could watch as he got the radio going through the computer. He would pick her up and dance with her around the kitchen and she would giggle until she couldn’t catch her breath. She would sing along to the music at the top of her voice, making up the words and terribly off-key, but she loved it.

  She also loved him filling up the sink with cold water so she could sit on the side and put her feet in, enjoying the varied splashes of anything she could throw into the water, thinking it especially hilarious if the splashes hit her daddy and he jumped with faked surprise. He was a wonderful daddy to her, and they formed a very close bond. Back then nobody could ever have imagined that our bubbly baby might be taken from us by something as insidious as cancer. She was so loved. Surely that love should have protected her.

  Chapter 2

  Monday 1 September 2008

  During the period when Andrew was at home looking after Za, he called me one Monday at work and asked me to come quickly because ten-month-old Za was sick. It was 1 September 2008 and I was trying to catch up after spending a week at home looking after her because of a cold. I was frustrated that he wanted me to come home and just wanted him to deal with it, but the tone in his voice made it clear he thought it was serious.

  He said, ‘Something’s really wrong with Za. She’s just lying in my arms. She slept for six hours. She doesn’t want to move, eat, drink or anything. She’s been like that all day.’

  I felt the truth in my body. I tingled all over and I was scared. I called our new paediatrician, Dr De Courcy, whom we had seen while our usual one was on holiday. Although he was super-quiet, I liked how his mind worked at a million miles an hour, searching for information. Za’s niggling illnesses rang an alarm bell with him. I could see it in his face and his earnest, drilling questions about the exact symptoms she had. He had ordered a blood test for Za with a long list of things to check and I had gone and got the test done immediately. Like all the other blood tests Za had had, it was difficult to perform because she was dehydrated and they couldn’t get a large sample.

  I trusted Dr De Courcy. By comparison, our usual paediatrician looked pretty ordinary. I told Dr De Courcy over the phone that Andrew thought Zali was unusually sick.

  He said abruptly, ‘Take her to hospital immediately. I’ve just got her test results back, I think it’s leukaemia.’

  I simply replied ‘Okay’ and hung up.

  I called Andrew back and said as I began to choke in sobs, ‘Babe, you’ve got to go to Gosford Hospital now. Dr De Courcy thinks Za has leukaemia.’

  I quickly got off the phone and pulled myself together. Drug Squad wasn’t the place for tears. I sent my boss an email saying Za was sick and I was taking her to Gosford Hospital and then I left.

  As I negotiated the Sydney traffic and drove towards Gosford, I called Andrew, who said he was still at home. He wasn’t saying much so I couldn’t work out why he hadn’t left yet. When I got home he was standing in the kitchen, leaning against the kitchen bench with Zali asleep in his arms. Her head was on his shoulder and he held the back of it with his enormous hand, her bottom resting on his other arm. She was a terrible colour. A pale grey.

  ‘Why aren’t you ready? We’ve got to go to hospital,’ I said alarmed at his lack of action.

  ‘I can’t move, Lisa,’ was his reply. ‘This is how she’s been all day.’

  I could see he was scared and didn’t want to go there without me. Neither of us wanted to believe this was true. I could see that he couldn’t move without her becoming very upset, even in her groggy state. I wasn’t sure if she was sleeping or unconscious because it was very difficult to rouse her. An ambulance would have taken too long and now that I was home we could get there ourselves in fifteen minutes.

  I quickly packed her a bag, including her blue book and various medical letters and notes from all the visits we’d paid to the doctors and specialists over the last few months of her little life. Andrew drove to the hospital and I sat in the car with the groggy Za in my arms. I felt very guilty for leaving such a sick child with someone who was recovering from being sick. It wasn’t kind to either of them.

  We got to Emergency at Gosford Hospital and I told the triage nurse that Dr De Courcy had asked us to meet him there. He was already waiting for us and brought us in immediately. After a brief period in Emergency, we were admitted to the Children’s Ward. A lot of blood tests were taken and Zali’s nappy rash and swollen stomach were examined. We were asked a lot of questions about her pooing blood and how she had cradle cap that came and went. Zali was extremely dehydrated and anaemic so a catheter was inserted and she was hooked up to fluids and a blood transfusion.

  A female doctor said that part of the reason she was worried was because Zali’s weight had dropped significantly. She was born in the ninety-fifth percentile, meaning that at nearly five kilos at birth she had been heavier than 95 per cent of her cohort. She now measured in the sixtieth percentile. While she was still heavier than most other children, she had dropped significantly from what was normal for her.

  I agreed that we had problems feeding her. Sometimes she would eat a whole tub of hummus, or an entire avocado as guacamole, but other times I couldn’t get her to eat a thing. We didn’t believe it could be leukaemia, though. That sort of thing didn’t hap
pen to people like us. And the pooing blood seemed a bit weird for that sort of disease.

  The next day, after a barrage of tests, Zali was feeling much better and had even eaten some Vegemite sandwiches. Our usual paediatrician returned from holidays and took over our case that morning. The skin tests and blood tests stopped because he didn’t think they were necessary. The results of the previous tests were inconclusive and he didn’t think it was worth doing any more. Her blood counts weren’t as low as those of a typical leukaemia patient so he didn’t think it was something as serious as that.

  Being rehydrated had made an enormous difference to Za and she had been changed to soy formula, which she tolerated much better. She was starting to get back to her chatty, interested self, asking about the people around us, the other children there, toys she was playing with. The pooing had eased from eighteen times a day to about four and there was less blood in it. The blood transfusion had given her more energy as well, though she was still a little lethargic. The nappy rash on her skin was a blotchy purple colour and darkest at the top of the nappy line. In her groin her skin had split and it bled. We were encouraged by the nurses to leave her nappy-less for the following three days we were there, to help the whole area dry out. A very thick moisturising nappy rash cream was given to us to heal and seal the affected areas. Normally a pea-sized glob several times a day would have been enough. We used half a tube a day.

  Za had two more blood transfusions over the next three days in Gosford Hospital and some more hydration. By Friday she seemed much better. Our regular paediatrician concluded that all her problems were related to cow’s milk intolerance. Allergies could be a serious business. We were in a ward at the time with two children who were suffering severe symptoms due to allergies including some of the symptoms Za had. One child had experienced life-threatening complications. The allergy diagnosis didn’t seem to fit exactly with Za’s condition, but it was the closest thing we had heard so far. This was the most in-depth analysis anyone had done, so we agreed that it must be the answer. We were to continue to use the cream until her rash was gone and keep her on soy milk. Five days after being told by Dr De Courcy our ten-month-old could have leukaemia, we were discharged from Gosford Hospital by our regular paediatrician and went home believing she was lactose-intolerant. We went on with our lives, Andrew learning to live with PTSD and Za now on soy milk and nappy rash cream.

  Eventually it became too difficult for me to continue to commute to Sydney. I was badly sleep-deprived as a result of Za’s nightly restlessness and constant small illnesses. I won a position in general duties at Gosford Police Station around Zali’s first birthday, in November 2008.

  It was an ideal job. It was fifteen minutes from home so I could do more hours because I wasn’t spending them commuting, and shiftwork fitted well with our family’s needs. Because of the flexibility of shiftwork, I still got to mums’ group with Za sometimes and caught up with my friends. Za continued to go to day care, Lach continued to play rugby and we socialised with friends on Saturdays at the game. I could patrol past Lach’s school during lunch, giving him a little whoop from the truck as I went past. It gave him a thrill to know I was nearby. He was in Year 5 and loved me being a police officer. I could sneak in a ‘foreign order’ or personal errand such as dropping off a script for Za at the chemist, as she continued to have constant minor irritating illnesses, and in this way the pressure on Andrew was also relieved.

  The work was the usual mix of maddies and baddies. There were lots of shoplifters, car accidents, domestics, assaults, deceaseds, forced hospitalisation of the mentally ill and searches for missing elderly people. In general, the crew was really good, and I genuinely laughed at least once on every shift. I was constantly tired because Za was only sleeping briefly during the night, so I just kept my head down, did what needed to be done and went home. For the next eight months we simply continued to struggle on, with little sleep, lots of annoying illnesses Za couldn’t shake, money problems, and managing PTSD.

  That was until we ended up back in Gosford Hospital. Back with Dr De Courcy and back with his suspicion of leukaemia, but this time with only twenty-four hours of Zali’s bright and happy life left.

  Chapter 3

  Sunday 3 May 2009

  The day after Dr De Courcy delivered that terrible news was my youngest brother Glenn’s birthday. My head was reeling that it had only been one day since Dr De Courcy had said those words, those awful cancerous words. The previous day already felt like a lifetime ago, somebody else’s memory.

  That morning, as Zali’s bed was wheeled from the Emergency Ward of Westmead Hospital to the Camperdown Ward where childhood cancer is treated, I realised I had no mental landscape of our immediate future. What would happen to Zali when we got there? What is the childhood cancer experience like for the parents? What is it like for siblings? If she died, how would it actually happen – those last moments? What would happen to the body? Would they do an autopsy? I didn’t want them to cut open my baby. What happens to everyone else’s life afterwards?

  None of the nurses I had dared to ask would tell me what happened next because ‘It’s different for every child, that’s why it’s so hard to treat’. I knew, though, that there must be some routine that happened, some sort of general plan.

  I didn’t know what to expect of hospital life. I didn’t have the language of the hospital. I didn’t know the routines. I didn’t know what was acceptable, what wasn’t, what happened on particular days, who did what. I had no idea how to assess if it was going well or how to tell if something was going wrong. It all felt wrong.

  I didn’t even know where I was physically. I knew the Children’s Hospital at Westmead was in Westmead, Sydney, but I didn’t know many of the surrounding suburbs to place it in my mind map. I knew State Crime Command, and my ex-work buddies Mel, Chris and Ana, were in the next suburb over. At least a friendly face would be nearby on Monday.

  As testament to my naivety, I called Carissa and told her what had happened. I said I didn’t know how long Zali would be in Westmead, but I expected we might be back on the coast in a couple of weeks so could she please hold our childcare spot for us. She agreed, through choked sobs, and told us to tell Za how much she loved her. (She told me later she had given my place away the next morning, as she knew full well that this could not be fixed in a few weeks.)

  As I walked alongside Zali’s bed, I could see that the layout of the hospital was enormous. Signs pointed to many different wards treating all manner of afflictions. There was the Butterfly Ward for children with eating disorders, the Variety Ward for contagious diseases, the Camperdown Ward and the Oncology Clinic for cancer treatment, a diabetes centre, a heart ward, a burns ward, a long-term comatose ward, a renal (kidney) ward, intensive care, a dental clinic, any number of illnesses with specialist clinics, day surgery recovery, operating theatres, rehabilitation centres, and a whole extra section for research.

  Because it was a Sunday there weren’t a lot of medical staff floating around, but there were a lot of inpatients. I could see in the beaten, drawn faces of the adults walking around with their children that there was obviously a path that people here had travelled before me. They looked so much tougher than I felt. I particularly marvelled at the hard-faced mothers who pushed their thin bald children in prams around the hospital. They squinted as though they were cattle drovers facing into the sun, pushing the pram like they were moving a reluctant cow down a track.

  There were corridors all over the place. Some areas were extremely busy, some deserted. Groups of student doctors walked quickly from one ward to another, getting as much exposure as possible to as wide a range of problems as they could. Hospital porters pushed the wheeled cots or beds of children from one place to another.

  There were the frantic Emergency patients waiting in line on one side of the hospital where we were being transferred from, and on the other side were children who were long-term patients receiving extensive and complicated care. Childre
n with bald heads casually carried sick bags with them as they sat in wheelchairs or prams. Burns children waited with translucent hard masks on their faces to help their wounds heal while their parents ordered a snack at the cafeteria. There were three levels to the hospital, with a curved ramp in the centre as an alternative to the elevators whose alarms sounded disturbingly like a child screaming. There were two cafes on one level as well as the cafeteria on the ground floor.

  I could see a large children’s playground through the glass doors on the side of the building and some gardens to walk around in. It was so strange to see the sunlight coming in through the glass roof and the glass doors. What were the children doing playing so happily and carefree in the sun, I wondered. How could they be so happy?

  On the other side of the playground but still within the hospital grounds was a large house surrounded by a safety fence. The sign on the gate of the house said ‘Ronald McDonald House’.

  In order to get through this maze of a hospital, and through this confusion of medical treatment, I knew I was going to have to trust the people around me. This was going to be extremely difficult for me. I was used to being in charge of my own life, and was comfortable making decisions for others. I’m not a naturally trusting person, either. The thought of waiting to see what would happen to Zali and my family, of trusting our future to strangers, was terrifying. It seemed such a flimsy concept to have to rely upon so heavily.

  It was a horribly cheery Sunday morning. The sun came through the glass windows as Zali was admitted into the Camperdown Children’s Ward. Her room had two single beds for patients but we were the only people in the room. There was a pull-out single bed against the wall for a parent of a patient to sleep on, and a chair. Either Andrew or I would sleep on this bed each night next to Za. I was told it had to be packed away as soon as breakfast was ready because the nurses needed the room around the patient’s bed. There was a television suspended from the ceiling and the door had a large glass pane in it so the nurses could look in. The patient’s bed had a pull-around curtain suspended from ceiling tracks. Za lay in the middle of all of this on the bed, hooked up to an IV drip with fluids. She was barely moving, suddenly exhausted now there was an explanation for all that sleeplessness. She watched quietly with her enormous blue eyes and got easily upset when new people came in. She was intimidated by her new surroundings and held my hand, which was constantly cold and sweaty with fear.