Saving Zali

by Lisa Venables

  Andrew told Cecelia what it was like to live with PTSD. I told her what it was like to live with Andrew while he had PTSD. I told her my work was being really supportive, but that I’d need to put some sort of report in soon to ask formally for more time off, and I didn’t know how that would go. The police could be the least compassionate when it came to their own. We told her how hard it was for Lachlan to be on the coast away from me, but how hard it was for him to come to Sydney all the time to see Za and me.

  She was so lovely. She didn’t baulk once at the enormous pile of stress we unloaded onto her. Eventually, when we finished talking, she told us she would try to get my family a room in Ronald McDonald House, which was a short walk from the exit on the other side of the playground. I had seen it through the glass doors the first morning I had walked with Zali to Camperdown Ward.

  Cecelia left with a determined burrowing walk. Two hours later, she returned. She had secured a room for my family at Ronald McDonald House (RMH) and we could move in there that night. RMH turned away up to thirty families a day in peak periods so we were very lucky. Kala, Lachlan, Andrew and I could stay in one of their fourteen or so two-bedroom sections inside the large house. She told us my mum, who had returned, could stay as well for this visit, but the house was just for immediate family members of inpatients at Westmead.

  This was fantastic news. It meant Lachie, Kala and Andrew could be at the hospital with me more. At any one time my family would only be a five-minute walk away through a playground. Lachie could go to the hospital school inside the hospital. It was usually meant for inpatients but she would talk to them about allowing Lach to go. It would be easier for Kala to get to school as she wouldn’t have to catch the train from the coast each day, cutting her travel time down by about an hour each way. Most importantly, we would be supported by a unique community of families going through the same thing we were going through in a family environment. It was brilliant.

  Andrew took everyone, including Mum, back to the coast and packed up our life. He spent some time telling a couple of our neighbours that we were moving. He told them he, myself, Za, Lachlan and Kala would not be returning home for some time, and asked them to keep an eye on the house for us. Poor Mr Mumu, our beloved black Labrador, was desolate. He knew something was going on and was terribly upset no one was home. He would be looked after first by the neighbours, then Andrew’s sister Tanya, then my mum. The family returned that afternoon, moved into RMH that evening and came and saw me after dinner.

  Everyone gushed about how wonderful the house was. There was a large communal kitchen where each family could prepare and store its own food. Once a week there was a charity dinner, where an organisation would come and prepare dinner for all the families in the house to give them the night off. Our rooms were big and comfortable, with enough beds for everyone. There was a large communal lounge area and a beautiful gas fire in a stonework chimney. Outside there was an enormous colourful play area with climbing frames and slippery dips. There were bikes the kids could use. The gardens were well established, with large native trees, orange trees and flowers everywhere. There were also washing machines and dryers, and volunteers who kept the whole show running but always had a welcoming ear available. The whole environment was encased in a happy, warm, welcoming home setting. My family were all so excited about it. I hadn’t seen it yet but believed their enthusiasm and I was so relieved to have them close by again.

  That day Cecelia cut us a big break. The rest of my family slept five minutes’ walk away from Zali and me in hospital and we were all relieved to be close together.

  Chapter 9

  Thursday 7 May 2009, 5 days in hospital

  By the time we neared the end of Za’s huge first week in hospital, I had hoped we would be getting some sleep, but she continued the pattern of fever, vomiting, diarrhoea and IV alarms going off, which gave her – and me – interrupted sleep. It had been several days since the biopsy and I wondered if they had an answer yet for what the problem was. There was something in the evasive, non-committal tone of their language which told me they did, but, as yet, nobody was giving us an answer. Andrew and Lachlan arrived at 10 am on Thursday and I was able to get a coffee and wipe myself down with baby wipes in the toilet as a makeshift shower.

  About lunchtime, the dermatologist invited himself into our room, telling us he was going to have a look at the cradle cap covering the crown of Zali’s head. He didn’t ask, he told. I could tell by the way he carried himself, tall and proud, and by his preposterous cravat and tweed sports jacket, that his time was expensive and he was used to doing whatever he wanted. He quietly observed Zali’s head, holding her face as he moved her scalp back and forth. Needless to say, Zali didn’t like it. I wished she had bitten him.

  He came back later that afternoon with two students and asked if he could take a photo. I asked him if he knew what it was. I felt it was a fair trade, a quid pro quo. He replied that he had an idea but he wasn’t sure. He then took a photo as if it was his right to really do whatever the hell he wanted because we were there in the hospital.

  With the hindsight I now have, I know that he knew without a doubt what was wrong. The lesions on her head and the purpura, a purple spotty rash, in her groin were a classic symptom of this not-quite-leukaemia mystery illness.

  Each day, Zali had many blood tests to keep track of her health. She could have upwards of four a day. They were painful, and she struggled and cried and fought against the nurses each time. The struggling and twisting made it harder to extract the blood and the needles left bruises. The constant attack on her veins made them calloused or they would collapse so the nurses regularly had to find other, less prominent veins to tap. Zali also had to have various blood products put back into her to replenish what continued to go missing, and fluid to keep her hydrated. These went through the catheter in her hand, which was kept still by a long splint and the white fishnet bandage over the top up to her elbow. It was uncomfortable and greatly restricted her movement.

  I was aware that there was pressure on to get an internal central venous line (CVL) inserted but I was playing ignorant in the hope this would go away. We had only been in hospital for a short time and I still felt like we were visitors to the hospital, not inpatients.

  A central venous line in laymen’s terms is a small tube inserted under the collarbone and pushed up to enter the jugular. It’s stopped from sliding in and out of the exit wound by a collar underneath the skin that is bigger than the entry point. The line, as it’s called, is then curled into a whorl on the chest and covered in a clear plastic sticker, which helps keep viruses and infections out of the opening in the skin. The curl on the chest gives the line some leeway if it is pulled by accident. After curling on the chest the line splits into two so that two lines can be used to put medication or products into the patient. The overall effect was a swirly tree with two roots.

  The benefits are that blood tests can be taken any time from the patient without any pain, as it’s a constant doorway to the bloodstream. Medication, blood products and chemotherapy can be put through it with minimum fuss. As the jugular is such a large and powerful vein it can accommodate the central venous line for a long time without the vein collapsing. As it’s near the heart, it takes about two minutes for whatever is put through it to pump through the body.

  I didn’t want the central line, despite its obvious benefits. To me, it was the final confirmation of a status I was still fighting so hard to resist. It was a surgically placed tattoo that made us a member of the Oncology Unit. It meant long-term, serious health problems and a long time in hospital. We wouldn’t be outsiders any more. Zali would look like all these other really sick children and be labelled as having this fatal illness.

  She wasn’t like the other children there. She wasn’t as sick as they were. She didn’t have such big medical needs. I hated how the medial staff were pushing me to a decision I didn’t want to make. I hated that they just wanted the line in to make things ea
sier. Easier doesn’t mean better. I didn’t want this big statement about my little girl being made. My fears weren’t listened to, and on Thursday 7 May, after the dermatologist’s visit, Zali had the CVL put in under general anaesthetic.

  Of course it was necessary, and Zali could now sleep without the interruption of blood tests, and the stress on both of us was greatly reduced. The catheter on her hand was removed at the same time so she was freed up. I was relieved that she was okay when she came out of surgery, and thought maybe this wouldn’t be such a big deal after all. She was comfortable with it. It could always be removed if we didn’t need it.

  Andrew, Zali and I were returned to the Variety Ward after the surgery into an enormous end room with a peaceful view over the garden and playground from the large window. As always, there was a bed next to hers where I could sleep. My mum, Andrew, Lachlan and I sat with Zali while she had dinner in the evening. She wasn’t eating much as she was still a bit dopey, but we all picked at her dinner, which encouraged her to pick at it too. The bed was raised to a half-sitting position so she could see and talk to us as she recovered from the effects of the operation. We had the lovely, efficient Maria looking after us that night, who was really pleased Za had the CVL in now. She hoped for a better night’s sleep for all of us and less stress and trauma for Zali.

  Maria took the first blood test from the CVL and we watched in amazement. Zali was worried when she saw the syringe, assuming it was a needle and it was going to hurt, but we told her, ‘It’s not for you, she’s touching the line. It’s the line.’ She believed that it wasn’t going to hurt and I distracted her on one side while Maria took the test on the other.

  I was so pleased. It was painless and easy and Za didn’t cry, which was a huge relief for all of us. Maria judged the amount of blood she had, holding it up to her eye, and was satisfied with her sample. She explained that she would now push through some saline solution to flush the line clean and then she would reseal it. Everything was done to the highest level of hygiene. Maria wore gloves over her clean hands, she cleaned the cap at the end as she removed it, holding it in a surgical wipe, she wiped the end clean with a new wipe, then she pushed through the solution. We all watched impressed. Zali watched too, curious but not distressed. The cap went back on, perfectly clean.

  As the cap went on Zali became extremely hot, instantly covered in sweat. I could feel it in my hand as it rested on her arm. I could feel sharp knives of panic in my stomach. I looked at Maria and said, ‘She’s really hot.’ We both looked at Zali and saw that her mouth was clenched tight and she was baring her teeth. Her face was a pale yellow–white. Her eyes were glassy and vacant and her head was tilted backwards. Maria hit the alarm button above Zali’s head and began to do something I couldn’t see. Zali started to shudder, waves of convulsion surging through her, shaking her little body. There was a lot of shouting as nurses came racing in. I moved out of the way as everybody quickly performed a well-rehearsed routine, executing some procedure involving medication I wasn’t familiar with.

  Within minutes the situation was under control. I was shocked to see that Zali was asleep as the crowd of nurses moved away. Her cheeks were their usual colour again and she seemed peaceful. I watched her chest and could see that her respiration was normal.

  Maria explained that the problem with central lines is that they can get infections in them, and that when she pushed the solution through, a wave of infection had entered Zali’s body. Even if everything was perfectly clean outside, sometimes viruses or bacteria could live inside the line itself, in the microscopic hills and ruts in the tube. The wave of infection and the reaction of the body – lowered blood pressure, raised temperature and racing heart rate – as the infection poisoned the organs it reached, is known as sepsis. I came to realise with time spent in the hospital that sepsis from the CVL was very common and serious. In children so ill, it could be fatal. The nurses took a sample of blood from the line that was sent off for analysis, and Za was given an antibiotic to help kill off whatever was living in the line.

  That night I stayed at the hospital with Za while Andrew and the rest of the family stayed at RMH. I slept fitfully, completely aware now of the field I was playing in and how precarious the situation was. Zali slept well. I heard the emergency alarm twice more that night and listened as nurses came running to assist the unfortunate patient. This many alarms in the unit in one night was very unusual for the Variety Ward. By the morning I was exhausted but I had been initiated.

  We were now part of the oncology scene and were the same as everybody else.

  Chapter 10

  Friday 8 May 2009, 6 days in hospital

  That morning, Kala returned home from dance camp. Andrew picked her up from the airport and they came straight over with Lach. Kath and Rob, Andrew’s parents, had also arrived that day from Cooma and planned to stay for the weekend on the coast with Andrew.

  The family all stayed with Zali and me that afternoon, trying to get their bearings in the hospital, and to understand the disease and what it all meant. I explained as simply as I could that six days before the doctors had expected Zali to die within twenty-four hours. She had not begun any treatment as yet because they didn’t know exactly what it was, so that constant threat still hung over us. The doctors thought it was probably leukaemia, Dr De Courcy had mentioned that, as had the radiographer who must have gotten it from someone in charge but we couldn’t get treatment until they could make a definitive diagnosis. To do that they needed the results of the bone marrow biopsy, which they kept promising would be Friday. Today was Friday and still nothing. Dr Kellie, whom I had met briefly the day before, had told me that the results were being further analysed by some specialists in America. In the meantime, Za was being kept alive with blood transfusions, albumin transfusions and hydration. She continued to have diarrhoea, vomiting and fever, and usually her bed was changed about four times a day because of this. We were alternating between Panadol and Nurofen every four hours for pain relief and fever management. If these doses were late she was very uncomfortable. I didn’t know what was going to happen, and I was very glad each day as I woke up that she was still alive.

  Everyone cried. Everyone felt powerless.

  I took a break and went to get some coffee. As I walked past the nurses’ station a group of six female nurses were gossiping about Zali. It was a tight circle of exclusive knowledge. I heard them say, ‘Yeah, they can tell from those sores on her head, it’s not cradle cap. It’s that, it’s really rare.’ They saw me as I got closer and stopped talking. They looked sprung.

  I confronted them and said that if there was something I needed to be told about now would be the time to do it. They all scattered except for one nurse I really liked. She told me the doctors were getting closer to finding out what it might be but didn’t have the answer yet, and it was a name she hadn’t heard of before and couldn’t remember. I could see she was being genuine so I didn’t push her any harder.

  That afternoon Dr Bhavna came through the ward to do her rounds but she didn’t come down the end of the corridor towards our room. I came out of our room and saw her turn to leave as casually and awkwardly as humanly possible. I walked up quickly to impede her.

  I told her I had heard that there had been some progress on the results. She told me they did have some news but that it was best not to worry until we had all the information. From what they could see already from Zali’s symptoms, they didn’t think it was leukaemia but something similar. They couldn’t be sure about the alternative so they were having the bone marrow sample closely analysed by some further experts in the field and some specialists in America. She wouldn’t tell me the name of the alternative.

  During my time in the force, like most police I developed certain common superstitions, generally based around Murphy’s law. For example, you never make a commitment to say out loud that you’ll get dinner at a certain time, or organise to meet another car crew at a certain time, because something will always
come up. You never say you hadn’t had a particular type of difficult job in a while, or that you needed to finish on time.

  The feeling I got from Bhavna in that sad-eyed look of compassion and refusal was that she didn’t want to say the name of the disease out loud in case it was true. She didn’t want to summon it by saying the name and make it come out roaring and fighting from the darkness as an unbeatable black, demonic beast. Or perhaps I was putting my fears onto her and inventing what she felt. Either way, she knew and wasn’t telling me.

  I reasoned with myself that it couldn’t be that bad, because surely leukaemia is the worst type of cancer, and if this wasn’t it then we had a good chance. Leukaemia has an 80 per cent survival rate so maybe Zali had even better odds. She was still alive, wasn’t she, and this was a week after it had been made clear to us she was on death row.

  Maybe it wasn’t so bad.

  Still, nobody was saying anything. If it was nothing to worry about, why weren’t they saying anything?

  Chapter 11

  Friday 8 May 2009, 6 days in hospital