Saving Zali

by Lisa Venables

  About two hours later, as Zali was being given a blood transfusion, Andrew came to the hospital with my mum who had arrived the previous day to help with Lach. Zali was still alive, so we were ahead of the game, though the seconds ticked by with brutal force towards our 24-hour deadline.

  Andrew looked terrible. His skin was grey and he had black rings under his eyes. He told me he had spent most of the night crying, and sleep had been fitful. He couldn’t believe when he woke up that this was happening to Zali. That she was actually here. The drive from the coast had been easy because there wasn’t a lot of traffic on the F3 on a Sunday morning.

  I told him about our night but he wasn’t really listening, just staring at Za and the nurses and the room. Andrew had clumsily packed a bag for Zali and me. He had only packed one full outfit for me, three for Zali, and no pyjamas or toiletries for either of us. He didn’t know what we would need or how long we would be here. He was as disoriented as I was.

  The nurses were sympathetic during the day. They calmly went about their work but nothing much was really happening. They kept taking blood samples from Za’s pinpricked inner elbow, and comparing them to the previous samples. I had no idea what was a good measurement or what wasn’t, or even what would be done in case of a bad one. To tell the truth I was too scared to ask what they were checking. Names of what they were looking at wouldn’t have meant anything to me anyway.

  I sort of expected them to tell me our situation was serious but should be better soon after X or Y happened. That was the standard answer for every illness I’d ever encountered with Lachie or myself. That was the answer to any problem I had ever come across. This bad thing has happened but if you do this or that it can be fixed. The incurable ones don’t happen very often. They only happen to really unlucky families, don’t they? It only happened to families with bad histories of cancer or tragedy. Not to families like us. Surely it couldn’t be as serious as Dr De Courcy had said it was.

  Because it was a Sunday the oncology specialists weren’t there, which meant we didn’t belong to anyone yet. Nothing would happen until a specialist said so. The hospital was quiet and slow. There weren’t many people around. As for any business, the weekends weren’t times when important work was done or decisions made.

  The hours ticked down, getting closer to the 24-hour deadline we had been given. It was all so calm and quiet.

  It was insane.

  Our daughter lay limp and bloated, dying from a disease that was in her blood and nothing was happening because it was a Sunday. I wanted to scream at the next nurse who came in. I wanted to grab her, shake her and tell her ‘Twenty-four hours, we only have twenty-four hours’, and make them start fixing her right away. ‘Don’t you know how special she is?’

  Doctors came and reviewed her numbers, made recommendations to the nurses and talked gently and nicely to us, but I had no idea what anything they said meant. I felt like we had been thrown onto a highway and were hurtling down it in the dark, with no control, with no idea of where we were going, and no way of stopping. We felt like we were simultaneously about to crash and had already crashed. It was confusing that everyone around us was talking kindly and slowly to us in a language we didn’t understand as if there was no urgency.

  I gave in to my fear and did the unthinkable – I threw up on and off that day. It was the cognitive dissonance between what I firmly knew was true and how people were calmly behaving around me. Years of being a mother and a police officer meant I could feel the truth in my body as clearly as knowing whether it was day or night. It meant I knew when to check on my children if they were quiet, or when there was someone in a dark, quiet house who shouldn’t be there. I just knew and could act.

  Now I knew there was a screaming, urgent problem but there was nothing I could do about it. I just had to sit still and wait quietly. The awful truth made me sick. The last hour of the 24-hour prediction came at dinnertime. Za ate hot chips with lots of salt while having an intense one-way conversation with me about each chip being ‘hot’. I had coffee. The time passed and she was still alive. I threw up to celebrate.

  Chapter 4

  Sunday 3 May 2009, 1 day in hospital

  After dinner I started to prepare for what I felt was our first real night in hospital, now that we were inpatients. Working out how to give Za a bath in the communal bathroom was difficult but necessary, as she had thrown up during the day and hadn’t had a bath since we had come to the hospital.

  The nappy rash in her groin was still an open wound, which made her resent the bath and scrabble over my body to try and stay out of it. Even lukewarm water felt boiling hot to her, but I couldn’t bear to put her into a cold bath. It just didn’t feel like it would be comforting to her and I needed her to have something that was homely. I needed things to be nice for us, a break from the horror. She wrapped her arms tightly around my neck as I stood her in the bath and just wiped her down with a soapy washer. She was too scared to let go of me, and I of her. Even though I ended up soaked through, it was nice to have her clean again, if only for a little while. Her skin smelt the way a toddler’s should and she looked so sweet in her purple pyjamas, her favourite flower ones. It felt comforting to be engaging in these normal evening routines.

  My family stayed with Zali and I until about 7.30 pm, when I needed to start trying to get her to sleep. Lachie was okay with me staying one more evening, but wanted to make sure I’d come home the next. As I kissed Andrew goodbye he started crying and we hugged for a long time. I put my hand on his heart and told him it would be all right. ‘It will be okay. They cure this stuff nowadays. Zali will get through this and everything will be fine.’ We hugged tightly and he left.

  I didn’t know if I believed a word of what I said, but I knew he placed hope in it, and that he needed to hear it. I needed him to hold it together for Lachlan, who was going home with him and my mum.

  To the uninitiated, as I was, the hospital at night is busy, bright, noisy and intrusive. Zali had a fever almost as soon as my family left. I buzzed for the nurse but got no response after what seemed to be a long time. As we waited and Zali cried, the alarm for the drip in her arm went off. Her hand had a catheter in it, which was held still by a splint to her elbow covered in a white elastic fishnet stocking to keep it in place. A drip was inserted into that to keep her hydrated. The drip hung from a stand on wheels next to the bed. A long cord ran from the bag of fluid, through a clamp and into Zali, joining her to the pole. A large box controlling the drip was on the pole and that’s where the alarm was coming from. I didn’t know how to turn the alarm off, or call for the nurse a second time. I couldn’t pick Zali up off the bed easily to cuddle her because of the drip so I climbed into bed with her and lay her on my crossed legs patting her and reassuring her. I was very conscious of not getting in the way of the cords going into her, which might hurt her if they moved.

  The alarm beeped continuously and eventually a harried-looking nurse arrived. The lights went on and the room was as bright as daylight. The nurse talked at a normal volume to me, not making any effort to whisper at all. The alarm was silenced and she went and got some Panadol for Zali, leaving the light on until her return. This routine happened throughout the rest of the night, about every three or four hours. The alarms went off or fever took hold, I pushed the call button and waited for an eternity. The nurse would come, the lights went on and everything would be sorted out. The nurse would always talk to me at a normal volume, never in hushed tones.

  The final time I rang for the nurse I pushed the wrong button and hit the alarm knob. Several nurses came running immediately. I was secretly very pleased to not have to wait a long time again. The mistake was put down to beginner’s uncertainty but it was good to know I could get a quick response if I needed to. The nurse must have been less busy on the last occasion. She was kind and concerned that the little sleep I’d had had been cross-legged sitting up in the bed. She actually spoke quietly to me to avoid waking Zali, which was a first.
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br />   It was 4 am and not long until morning, I consoled myself. Hopefully we could get some sleep and maybe wake up later, like perhaps 7.30 am, when Andrew wouldn’t be far away. It was Monday morning so perhaps things would get going when the specialists arrived.

  At 5 am the nurse came and took blood from Zali with the usual struggle and pinning down. At 7 am we were told to get breakfast before they took it away. By 9 am the doctors were doing their rounds and I got a brief explanation from a Dr Bhavna about what we could expect. She was an understudy to the oncologist Professor Kellie who would be in charge of Zali’s treatment. She explained to us what the nurses were checking when they did Zali’s blood tests and advised us that a lot of parents found it reassuring to write the numbers down in a book we would be given to keep track. I thought it was quite macabre to want parents to keep such a detailed record of these blood measures and wondered why the hospital’s records wouldn’t be considered by the parents to be enough. I had noticed that one of the doors had a handwritten sign on it stating that only the mother was to administer medication. It seemed to me very passive aggressive of the mother and really unnecessary. It was a loud and clear statement that she did not trust the nurses to do their job. Perhaps this record keeping was related.

  There was definitely an undercurrent of knowledgeable parents taking a strong role in the hospital. I was told that Zali could get ‘bravery beads’ to mark significant measures she was brave for in the hospital such as blood tests, operations, transfusions and chemo. We had already had so many checks and transfusions in these forty-eight hours. I imagined the collection of beads we would have and told them we wouldn’t be collecting them. I knew how brave Zali was and I didn’t need a solid record of everything we were going through. I could remember every single test just fine.

  In Zali they were measuring red blood cells, white blood cells, neutrophils and albumin. The neutrophils, a type of white blood cell that forms part of the immune system, are a significant marker for a child with leukaemia, indicating whether or not they are making a recovery from the disease. They are burnt by fever and used up when fighting infection. A child sick with leukaemia does not have many. Za had none.

  Camperdown Ward was busy and well equipped. There was a comfortable parents’ room with large soft lounges, Foxtel, iceblocks in the fridge, and frozen meals and food provided by various charities for families caught unprepared, which surely must be everyone at first. There was a noticeboard full of friendly notes about meeting days for mums to talk about what it’s like living with a child with cancer, free tea and bickies provided. There were notices about charities that could help financially, a magazine produced by the ward, upcoming activity days out, lectures on nutrition during treatment, and requests by various universities for patients to participate in studies. There was a computer connected to the internet so people could keep in touch with friends and family, and there were games and puzzles for the kids.

  World-class specialists in obscure fields came constantly to the ward to speak with parents and observe the children first hand. They offered their valuable insight and knowledge in an effort to help the children they saw. These children were a priority, and careers were made on the obscurity of the problem and resulting cure.

  There was a music therapist whose salary was paid for by a charity, a play therapist paid for by the hospital, and loads of family visitors. The Starlight Theatre had a TV channel the kids could connect to, run like a closed-circuit TV, and bored children could call and talk on air to the funny hosts and watch other kids in the room play games, do craft or perform on the stage. As flowers can carry viruses in their pollen they are banned from the ward, but supporters had quickly realise that inflated balloons are much more fun. Balloons were constantly being delivered and cheerfully filled up the rooms. There were games machines or ‘eggs’ that could be borrowed, and the kids could play games or watch movies on them, while the TVs had Foxtel for each bed, paid for by a charity.

  That morning passed with a flurry of information about Zali’s treatment. I assumed this Professor Kellie had organised a lot of specific information about what we could expect at the hospital and I was overwhelmed but glad to be included.

  Andrew, Mum and Lach drove down again from the Central Coast that morning and stayed with Zali and me that day. Lach was getting weary of all the driving and started nagging me about when I’d come home. I told him I wished I had the answer for that. Andrew looked more refreshed because he’d had a much better sleep and was feeling a bit stronger. He spent a lot of the day on the phone telling people what had happened. I felt resentful of his ability to sleep and chat.

  I stayed again that night, but this time I was a bit more prepared. I had watched the nurses carefully during the day and had seen how they silenced the alarms on Zali’s medical equipment. This made a big difference to our serenity that night. I went to bed at 7.30 pm with Zali, and during the night got into a semi-functional routine. I stopped feeling the need to be alert and make conversation when the nurses came in or be embarrassed that they were seeing me in my pyjamas. That night I silenced the alarm, buzzed the nurse, got into bed with Za and patted her while they did what they needed to. If I spoke to them at all it was in hushed tones and eventually they stopped talking so loudly. She only vomited once but vomits were a big deal to clean. They meant new bedsheets, new pyjamas and wiping her down all in the middle of the night, which she wasn’t happy about. At least it was only one vomit, though. It wasn’t ideal, but it was better. I had the same amount of solid sleep, but during the interruptions I kept my eyes closed and dozed lightly as the nurses worked around me. This helped a lot and would be the pattern of sleep I would settle into for a large chunk of our hospital stay.

  Chapter 5

  Monday 4 May 2009, 2 days in hospital

  That same Monday Zali had a bone marrow trephine organised by Professor Kellie. They were going to take a sample of the bone marrow from each side of the back of her pelvis using a tiny apple-corer type of needle. The plan was to sink a 1 mm bore hole into her bone and extract a sample. The sample would then be decalcified over a couple of days, and then cut into microscopic sections and examined. This information would tell the Professor about the architecture of the bone and the cell density. At the same time they would do a bone marrow smear where the appearance of the cells in the bone marrow were examined and assessed for their tendency to consume other cells. It would take a couple of days of testing before they had an idea of what was wrong, and it would take 10 days, possibly a bit longer, before they could diagnose the problem precisely.

  Andrew, Mum and Lach had not arrived from the coast by the time of the operation so I went alone with Zali to the operating theatres nearby. The trephine would give a clear definition of what was ailing her. Most importantly, it would indicate her level of illness and dictate her treatment.

  This was the first operation Zali had ever had and I was afraid. I was afraid it would hurt her, I was afraid they would do something wrong and she would be killed or injured, I was afraid she would be confused and upset when she woke up and I wasn’t there, and I was afraid I wouldn’t be able to soothe her enough. I felt sick with anticipation and willed as hard as I could for something to happen to stop this operation. In my panic I rejected the idea of the biopsy, but my head and heart knew it was necessary in order to find out exactly what was wrong.

  A nurse put some cream on Za’s hand and inserted a new catheter. It was enormous and took up most of the top of her hand. It was sickening to look at this out-of-place medical apparatus sticking out of my daughter. She didn’t like it either. I could see it rolling over her bones under her skin. She was transported on her bed to the operating theatres by a porter. In retrospect, I realise it was a quick five-minute walk through the corridors of the hospital, but at that time, suffering from fear and nausea, I had no idea where we were.

  In the pre-operation rooms, the surgeon and anaesthetist introduced themselves to me as the nurses quickly ensur
ed all the preparations were made. I was tense as the nurses and doctors explained what was going to happen. It was so simple, this procedure to find out if my daughter’s bones were killing her.

  There were so many specialists there that the room was full. I couldn’t imagine they were all there for Zali, but they were. The scale of what we were up against was very apparent. Then, as soon as it had been explained to me, it was time to go. Zali was crying and upset but I could see that the drugs were starting to take effect. She was getting drowsy and they were moving quickly on the opportunity. I was given a buzzer and directions to the waiting room and told they would let me know when it was time to come and see her. I felt disoriented, alone, scared, dizzy and sick. I saw a nearby toilet, ran to it and threw up. I dry-retched for a while but pulled myself together as quickly as I could because I was worried I wouldn’t hear the buzzer going off. I really didn’t have time for my own hysteria.

  Luckily, the waiting room wasn’t too far from the toilet. I used the enormous mural of a rhinoceros for reference and found my way back. I gripped the buzzer in my hand and hoped the signal it gave would be strong enough that I wouldn’t miss it. The buzzer was a clear white paddle-pop-sized rectangle, just like the ones they give you at the pub when you order food. I waited there with two other mothers, all of us teary and none of us able to talk to relieve the tension. I waited for about two hours. It felt like an eternity and at the same time no time at all.