I was worried they wouldn’t call me as soon as she was out of the operation. I was worried something had gone wrong. When the device went off it buzzed and flashed brightly in my hand. I went to the door and waited for a nurse to come and get me. Finally the doors opened and there was a nurse talking to me, trying to explain what was happening, how the operation went and how Zali was, but I simply ignored her as I wandered through recovery looking for Za. I could hear her crying and couldn’t give a shit about what this woman wanted. She was irritated but eventually gave up and directed me to Zali.
It was clear Za had been awake for a little while. She was crying and upset, I imagine at the insult of being rendered unconscious while someone did something to her body. She was confused as well. I climbed into her bed as best I could to comfort her and she clung to me, wrapping her legs around me like she wanted to be picked up and taken home. The porters came and returned us to Camperdown Ward, where we had been moved to a different room.
It was frustrating to have our room changed. It made me feel like I was being pushed around without having any say in what was happening to us. I couldn’t get a feeling of security or stability. As Za began to calm down in our new room, I changed her nappy. When I took the nappy off and inspected my baby I could see two bandaids on the back of her pelvis where the bone marrow had been taken. Underneath each bandaid was a tiny red circle. I imagined a neat bore hole had been sunk into the bone and a thick sample had been taken. Such a small mark for such a significant test.
Andrew arrived later that afternoon, at about 3 pm, with Mum. I told him I would need to go home that night for some sleep. I was exhausted, and as much as I didn’t want to leave Zali, I needed to get some sleep or I would be useless to everyone. He would have to stay the night at the hospital for the first time. I left at about 4 pm, barely able to keep my eyes open as I drove in the thick, slow, peak-hour traffic through Sydney, then up the F3 towards the coast. If there were any car accidents on the F3, a common occurrence, and the traffic came to a standstill for too long, I feared I would fall asleep in the car and never wake up again, I was so tired.
It took me two hours to get home. Lachlan was thrilled to see me. He had been at the neighbours’ house that day and had missed me. He immediately acted like nothing at all was wrong in the world and just settled into watching the TV. Mum made me some dinner while I had a long shower. I went to bed early and for the first night in many, I slept right through the night with no interruptions. I woke up early, threw some clothes in the dryer, got Lach and Mum in the car and left at 7 am to return to the hospital.
Andrew’s night had been exactly like my previous ones. There had been vomits, fevers, IV changes, alarms and loud nurses. He was exhausted and desperately needed a break when I arrived. He left immediately to get a coffee and some breakfast from the cafeteria downstairs. Sensing the opportunity for an egg and bacon roll, Lachlan went with him. Mum had to leave and catch a plane back to Brisbane. Like us she hadn’t known at the start how long this would take, so had only taken a small amount of leave, but she promised to return in a week to help. Her going would give Kath and Rob, Andrew’s parents, an opportunity to come and be with us the following day.
As everyone left, Dr Bhavna arrived. I asked her if they had a result from the bone marrow biopsy yet and she told me it would take between seven and ten days. She had no other information to offer me, so our conversation was brief and she soon left. I could feel some sort of tension building, but as I didn’t know this new environment, I had no idea what it was. I could see some uneasiness in Bhavna’s face, but she was tight-lipped about her concerns. I didn’t have the confidence in this new space to push her about what it could be and, even if she had told me, I wouldn’t have understood.
Now that I had a general time frame to work from, my mind was put somewhat at ease. Zali was alive, and they were working on an answer to what exactly was wrong. I’d had some sleep and I felt I could concentrate a bit better now. This was as good as it would get for a little while. All I could do was wait.
Chapter 6
Tuesday 5 May 2009, 3 days in hospital
That day, while still waiting for the results of the bone marrow biopsy, Zali had an ultrasound on her abdomen. It was a relief to be moving towards some sort of action after three days of sitting and waiting and worrying. She also had her first experience of ketamine for pain relief.
I wasn’t sure why they were giving it to her, but the nurses said they needed her conscious and it was much easier if she wasn’t distressed. That was a telling comment and I should have paid more attention. I didn’t really think there was much call to make a child unconscious unless you were doing some major sort of operation like heart surgery. It was a bit dramatic, really, and I am not the dramatic type. I also didn’t know why she would be distressed as she was actually pretty happy in hospital when she wasn’t getting blood tests. She got a lot of attention, a constant supply of stickers, books, nail-painting and songs. There was a lot of distraction and she loved it.
Anyway, at lunchtime the nurses came and told us with a sense of urgency that the ultrasound was going ahead and they would start preparing Zali. Again I was a bit confused. In my world an appointment was made, you turned up on time and the professionals did what you were paying them for. The nurses had already told us it would be today, so of course it was going ahead. I thought a big deal was being made out of a perfectly normal scan. I thought they would be having a look at Zali’s bowels and seeing where the hole in them was due to the leukaemia, and that was the extent of what they would be able to see with the ultrasound. I thought there wasn’t a huge amount they would be able to see with this scan.
Za had the ketamine and melted into a happy dreamy conversation with everyone around her. The nurses had insisted I sit on the bed with her as we were wheeled to the ultrasound rooms because of her dopey state. Za liked the novelty of going for a ride and pointed at the pictures on the walls, smiling with the silly grin of a drunk at people who went past.
The ultrasound room was painted dark blue, with a mobile of an orange clown fish with black stripes hanging from the ceiling. It moved gently in the air conditioning. The radiographer was friendly and chatty. She explained that she had reorganised some appointments that afternoon so she could see Zali. ‘What about those people?’ I asked her, feeling a little uncomfortable that I had pushed in.
‘They’ll have to wait for their new time,’ was her simple reply.
‘Oh, but what if it was important?’ I continued.
‘Well, Professor Kellie called me and told me he needed this ultrasound done. This is very important and urgent, so we’ll do this first.’
I started panting shallow breaths. This was a big deal. She thought it was urgent and significant, and she looked like she had seen it all. I didn’t want us to attract attention. Attention meant trouble. It sounded like this Professor Kellie was starting to do some investigation into what exactly was wrong with Za. We were going to get a lot of attention now.
She asked about symptoms and I explained as I already had a thousand times over the last few days. She, like all the other professionals, nodded as she prepared the ultrasound and gel. She was reserving her judgement but collecting information to direct her checks. As she checked Zali’s bowel, I asked her what she could see. She showed me the screen and I could see lines of white lumpy sausages on a black screen with round translucent marbles in them.
She said with a surprisingly casual tone, ‘Oh, I can see lots of raised lymph nodes, but that’s what you’d expect in a leukaemia patient.’
This was such a shock to me. This was the first absolute sign of something close to leukaemia, and she was the first person who simply assumed this was the diagnosis. It was confirmation of a disease I wasn’t ready for. I didn’t react because I didn’t want her to know that nobody else had given us specific information like this and I wanted her to keep talking. She told me she could see thin places in Za’s bowel that had obvio
usly been bleeding. She performed an ultrasound on Za’s liver and spleen and noted that they were very large and swollen. This was why Zali had the ketamine. Without the ketamine, pressing down with the end of the ultrasound wand would have been very painful.
Zali was delightful during the scan. She was hallucinating that the orange fish from the mobile was floating past her. She kept pointing to it and saying hi as she watched it go across the room. She also kept forgetting that the radiographer was there, and when she turned her head back to see what was happening she’d say, ‘Oh, hi.’ The radiographer would smile and say, ‘Hello, Zali,’ which pleased Zali immensely and she would go back to watching the fish.
The ultrasound finished and we were wheeled back to our room. Zali had a bowl of dry cornflakes for dinner. She was famished but couldn’t remember where her mouth was. With her index finger and thumb she picked up the cornflake, placed it firmly at the top of her cheek and dragged it downwards until she found her mouth. They made a very satisfying crunch as she ate. Not long after that she went to sleep and slept well, the pain relief making a big difference to her comfort.
I waited until my family left that night before throwing up in the bathroom. I forced myself to think about the images on the screen of Zali’s raised lymph nodes and what this meant. I wanted to understand what was happening so I could get involved in fixing it, but the idea of it all made me sick. I was unaware of how deep we were in but I was starting to get a clue. The new rules and expectations were in place, and the sooner we came up to speed the better.
Later in the year we would hear Professor Kellie describe Zali’s liver and spleen as being so inflamed that they were four times the size they should have been.
Chapter 7
Wednesday 6 May 2009, 4 days in hospital
By the day after her ultrasound, Zali was over it and so was I. I’d had enough. I had been home for one night since we had arrived. I was extremely tired. I was no longer able to control my vomiting, and couldn’t stop throwing up out of fear. I hated having to be the bad person pinning Zali down when they took blood, or have her fighting me when she had a fever because she felt so sick. I hated not having any clean clothes and her not having enough clothes because she kept vomiting on them. There were body fluids on everything all the time. I hated not being able to have a shower easily, I hated the hospital food, I hated that Zali wasn’t eating and was so upset so often. Where was my happy baby? I hated that no treatment had started, despite this being the most extreme of emergencies with the most urgent of time frames. The novelty had worn off for both of us and I wanted out.
Zali developed a runny nose that morning, which was no big deal to me. She always had something. In the Camperdown Ward, however, it’s a very big deal. These children have little or no immunity. That means no ability to fight any virus or common illness, big or small. If they got sick it could kill them. So the nurses took a sample of Zali’s snot. This process involves the nurse coming in with a machine that made a sucking noise like a vacuum cleaner. I had to hold Zali’s head still with the help of another nurse while a sucking tube went up her nose and took a sample from the back of her throat.
If the test is positive for RSV (respiratory syncytial virus), the common cold, you have to go to the Variety Ward in another part of the hospital, which deals with contagious diseases. I didn’t want to go to a ward full of sick people. Zali might get sick. And what about the nurses moving between the rooms of sick children? Surely they were the biggest carriers of germs.
Also, I was really over being moved. We’d gone from Emergency to a Camperdown room, to another Camperdown room in the period of four days in hospital. I needed a sense of place so we could settle and work out a routine and begin to anticipate how our life would work out. The moving was really unnerving and upset the small amount of stability we had. I felt like we didn’t belong here, and the shifting increased that feeling, but nobody would let us go home. Not that I would have gone, because nothing was decided yet. I was disconnected from my world, but not a part of the hospital world.
The RSV test came back positive and we were moved straight away to Variety Ward that morning, where the conditions couldn’t be more different from those in the Camperdown Ward. The Variety Ward is for general medical isolation. Children with contagious diseases who need to be isolated from others go there. Basically, it’s a spew and poo ward.
We had Foxtel on Zali’s TV because we came under the oncology banner, and we had the music therapist visit for the same reason. If you were not an oncology patient there was only the toy library, the book library and the overstretched play therapist. Children could borrow a small number of books from each library and had to return them a few days later. We used them a lot to relieve the periods of boredom.
The parents’ room had a broken TV, a broken microwave and a small firm lounge. There was a comfortable round table to eat dinner at. There were no meals in the fridge donated by kind-hearted souls, the DVD players didn’t work most of the time, there was one games ‘egg’ and not a lot of visitors because of the contagion factor. In general, there wasn’t much need for specialists to come to the ward because the diseases are transitory and predictable, such as measles or whooping cough. These diseases could be very serious problems in their own right but there wasn’t a huge fanfare of interest in them.
I wasn’t very impressed, but the nurse we had in the new ward immediately made me feel cared for and welcome. Her name was Maria, a perfect Italian name for this perfect nurse of Italian heritage. She had been a nurse all her working life and had worked at the Camperdown Children’s Hospital before it was closed and reopened as the Children’s Hospital at Westmead. She was in her early fifties, with a nonna-shaped body, brown bobbed hair, large round glasses and olive skin. She was shorter than me, and had a quick, sensible walk whereby she’d put her head down and use the walking time from one end of the corridor to the other to think things through. Although she looked distracted, as if she was memorising a list of things she couldn’t forget, she was razor sharp and highly organised. She was very experienced with oncology patients and told us the ward could sometimes be almost full of oncology patients because of immune function problems. I felt like she was a friendly hotel manager who would also take the best care of my daughter.
It was actually a relief to be in Variety Ward, as it turned out. Each day in Camperdown Ward had brought more tests, prodding and poking. None of it was nice, all of it was unsettling and Zali cried every time. I was so tired and hungry and dirty and frustrated, but that first Monday in the Variety Ward the nurses made an effort to talk to me and get to know me. They took the time to take care of us emotionally and that made all the difference. In fact, what the ward lacked in facilities and luxuries, it made up for in staff care. I would have gone quite mad with distress and loneliness if it hadn’t been for the interest these nurses showed in Zali and me.
Chapter 8
Wednesday 6 May 2009, 4 days in hospital
Andrew had arrived at about 10 am on the morning we were moved to the Variety Ward. I was relieved when he came and was glad to have someone to talk to. I nattered to him about what had happened while he had been gone, about the lovely new nurses, why we were here in this new ward, Za’s fevers reaching new heights of 40 degrees, her lack of appetite and how many blood transfusions she’d had.
After I had explained my new stressors to Andrew, a medical photographer came who wanted to take photographs of Zali’s symptoms. We had a heated argument with both the photographer and the Variety Ward doctor about having the photos taken and refused permission.
By 11 am we were both annoyed, harassed, frustrated, angry and scared. Just as the photographer and the doctor left, a tiny slip of a woman meekly slunk up to the glass sliding door. She was a size six on a heavy day and had a big floppy mop of dark curly hair. She had an administrative air about her and clung to a clipboard pulled close to her chest. As she approached the door, Andrew said loudly and directly to her, ‘O
h, for fuck’s sake.’
I was mortified by Andrew’s foul-mouthed bullying of this tiny, timid woman. She stopped at the door, startled. To my great surprise and admiration she put her hand on the door and stepped inside.
‘Can I come in?’ she asked. ‘My name’s Cecelia. I’m one of the social workers. I can come back if this is a bad time.’
‘No, no it’s okay,’ I offered. ‘We just told a photographer to go away. He wants to take photos of Zali’s disease and they aren’t very happy we said no.’
I liked Cecelia immediately. It took a lot of bravery to enter the room of grieving parents, especially when one of them had been rude. Cecelia went on to explain how she could help us by being a patient liaison with doctors if we were having difficulty. She could help us get reports written for the health card from Centrelink that the hospital used to claim its medication costs for Zali. She could offer us basic grief counselling, help us access money and organise some accommodation for us. She was, in short, a godsend.
For over an hour and a half we went through our story with her. How we were feeling, what our money worries were now that neither of us was working, job worries, accommodation problems and family issues. We told her how unfair we felt this was and how isolated we both felt now that we were separated by having to sleep in different locations. We described how supportive or rudely silent people had been. We told her how upset we were, how scared we were, how confused we were, how difficult it was to manage the feelings of our children who felt all those things too. Because I was on leave there was no shift loading, so money was even tighter than the extremely tight situation it had been before. Andrew was receiving a police insurance payment, which was only part of his basic salary, so he wasn’t getting a full wage either. After he went through the process of leaving the police he hoped to return to plumbing, which he’d qualified in before he joined the police. Kala’s Sydney dance school was very expensive, there was child support for Danni and the mortgage still needed to be paid each fortnight. We said that when she got back from dance camp, we might have to tell Kala we couldn’t afford her dream school, which would be another blow.
Saving Zali Page 5