As the nurses peeled out we went back into the room. A light blanket had been put over Za and a nappy had been put on her again. Ann-Marie and Patrice worked away quietly at the computer, monitoring her. Patrice was deliberately avoiding eye contact with us and was keeping us at a professional distance. As soon as we came in Ann-Marie made eye contact with us and her eyes welled up with tears.
‘I’m so sorry this happened,’ she cried. ‘I’m sorry, I shouldn’t be crying. Zali is so beautiful. I have a little girl her age and I know how much I love her. I know how much pain this must be causing you guys. We’re doing everything we can to take care of little Zali. We won’t let her down.’ It was a warm motherly hug of words and a promise of protection.
We sat with Zali for the rest of the afternoon. It was actually very peaceful. While she was in a coma, a machine performed the role of her kidneys. Another performed the role of breathing for her. Antibiotics acted where her immune system couldn’t. Fentanyl took away her pain and blood products were put back into her. Everyone and everything around her was helping to take the load off her as much as possible. She didn’t have to do anything but rest.
The day came to an end without any more drama. By that time my mum and her husband Gavin had arrived, as had Andrew’s dad Rob, and Danni, Andrew’s younger daughter from his first marriage. We let the rest of the family take Kala and Lachlan back to the unit. We asked if there was somewhere we could stay in the PICU so we would be close if Zali crashed again, and the doctors offered their own sleeping room within the unit. It was a very small room with two single beds. It was completely soundproof and totally dark when the lights went off. After dinner at the cafeteria, Andrew and I went to bed by 7 pm. The lights went off and we woke at 7 am the next day with no interruptions and no complications. That in itself was a miracle.
Chapter 25
Tuesday 23 June 2009, 52 days in hospital
5 days in PICU
Tuesday was Za’s first official day of being in a coma. After I woke and checked on her I went back to our RMH unit and had a shower.
As I walked back to the hospital I heard Francis’s soft whistle behind me like a bird call. When I turned he smiled his cheeky smile and caught up with me. His soft, fuzzy-haired presence always made me feel better and I smiled back. He was going into the hospital with Solange for the usual check-up and asked how Zali was. I told him she was bad. Her heart was bad, her lungs were bad, the disease bad, and she had a tube from her nose to her lungs. I said she is sleeping for five days. When five days finish, maybe the finish of Zali, maybe life.
It wasn’t a perfect explanation but it was as good as my dodgy French got. Francis just nodded as I talked and looked at the ground. We arrived at the hospital and went our separate ways. I couldn’t tell by looking at him what he thought.
Later that day Laurent, our New Caledonian friend who spoke excellent English, approached Andrew and told him Francis was worried and wanted to check on Zali. He wasn’t sure if my French had been really bad and I had said the wrong thing. Andrew confirmed that Zali was in a coma for the next week. Laurent wished us well and went back to Francis to report.
Francis was proud of never having been to a hospital or taken any type of Western medicine. He lived on a small island off Noumea where it was likely medicine played a minimal role, if any. As the chief of his village he was a bit of an authority on the natural medicine his family used. It was incredibly courageous of him to come to Australia with his granddaughter for her to have a tumour removed. The whole hospital was so focused on illness and medication that it must have been such a foreign world to him in more ways than one.
We made a point of visiting his granddaughter Solange whenever she had to come into the Variety Ward. She really hated being in the ward because she felt so isolated. Even though her makeshift family of assorted New Caledonians at the hospital still stuck with her a lot, there were times when she was on her own and it was lonely and boring.
The following day as I sat near Zali’s bed, I looked up and saw Francis and three other Kanak New Caledonians at the door. I was so taken by the effort he was making. They all looked like they were waiting to be told to leave; they were very uncomfortable and out of place. They looked like they felt too lowly to be in this area of the hospital. It also must have been a very confusing place for them and nothing at all like what Francis would have experienced before. It was written all over his face that he would love to get out of the unit as quickly as possible.
I beckoned him in. He washed his hands and came in, not really looking at Zali, or even at me. He made a point of looking out the window at the beautiful view of the Chinese garden. Eventually he came over to Za as I talked to him and looked at her taped-up face.
I said, ‘This is not Zali. This is not my baby. Her face, and the tube are not the baby I know in my heart. This is horrible.’
He didn’t look me in the eye, but looked at the ground and nodded. He looked out of the window for a bit then left without saying a word.
That night I left the hospital at about 9 pm. The unit was about a seven-minute walk from the hospital, five if I put in the big ones. It was dark and cold as I stepped outside. I walked quickly, taking big strides. The hospital grounds are spooky at night, and the lights that are around throw a weak, hollow light.
It was completely dark as I approached the short bridge across a small creek near the big RMH. I could feel the cold coming off the water as it swirled around my fingers and filled my chest as I breathed it in. I could hear the night noises of bats clicking, the water running and my footsteps as I walked. The wind was blowing and there was not a single soul around. If I walked quickly from here I could be home in about two minutes. As I approached the start of the bridge I could hear someone in the bushes just underneath it. There was a clearing there and during the day you could pass through it and have a nice bushwalk along the creek.
I quickened my pace and gripped my keys in my hand. I poked one key out from between my knuckles and made a fist around the key ring. A punch like this would really hurt whatever it hit, perhaps even penetrate, which would distract the offender long enough for me to run. My heart was racing as I made out the medium build of a man coming up to the road through the bushes. It was too late to cross the road. I put my head down and prepared to run when I heard, ‘Bonsoir.’
I screamed ‘SHIT!’ at the top of my lungs. It was Francis. I could see only the whites of his eyes and his white teeth as he smiled his big smile and chuckled to himself.
I asked him what he was doing and he replied simply that he was speaking to his family. As all of Francis’s living relatives were still on his tiny island, I assumed he meant his ancestors. His statement and demeanour made it clear that even if I had asked in correct French he wouldn’t have told me any more.
‘Bonsoir, Francis, à demain,’ I told him firmly (Goodnight, Francis, see you tomorrow) as he chuckled to himself.
The next time I saw Francis was on Sunday afternoon. He had been to church for most of the day as he was devoutly religious. I didn’t really understand his religious affiliation given his traditional background. There was a translator at dinner that night so I asked Francis through her if the sermon was in French. He replied no. I said to him with a smile that maybe the priest was very intelligent and spoke in Nengone, Francis’s native language. He laughed and said no.
I asked again through the interpreter why Francis went to church if he couldn’t understand what was being said. His answer put me to shame. He said you didn’t need to speak the same language to be able to speak with God. He said that he went there to pray for the children at the hospital, and he said special prayers for Zali to wake up again.
He said when I looked at my watch and it was 11.11 or 4.44 or 2.22 that this was the spirit of our ancestors talking to us. This had been happening a lot to us lately. I thought of Francis under the bridge talking to his ancestors. Whatever he did to stay connected with spirit, it was a powerful force.
Wednesday 24 June 2009, 53 days in hospital
6 days in PICU
The next day, the second day of Zali’s coma, Professor Kellie came and saw us. He told us he was very shocked when he had arrived at work that morning to hear what had happened. He was sorry Zali was so unwell and commented that this disease was certainly resistant to treatment. He assured us that we were in very good hands and that he had briefed the PICU doctors on her condition and treatment. He would continue to keep in touch with the doctors and he would come and see us again soon. It was only a short visit and he left after that.
I pondered what he had said to us. I was surprised that nobody had called him when things had gone so badly wrong and told him what had happened. After all, he was the person who was ultimately responsible for Za’s treatment and really, it was his choice of chemo that had made her so sick. He was the main decision-maker. What if she had died? Would he have found out through an email when he arrived at work that morning? Surely we meant more to him than that? We were one of only two families experiencing this disease. Wasn’t that special enough to warrant more attention from him?
It was really awful to realise, when I allowed myself to be honest, that in his long career in Australia and overseas his child patients died often enough and that in any case there was little he could do about it. He was not an Emergency doctor. This was a high-risk-of-mortality field. He couldn’t pull an oncology-cure rabbit out of a hat on short notice and fix the problem. We were being kept at a professional distance to protect him from the heartache of becoming close to a patient who dies. If he was detached, he could cut through the emotion and make difficult decisions that might even prevent death.
We saw Professor Kellie again towards the end of that day. As we sat grimly in Zali’s room, watching nurses monitor her, hoping she was just sleeping deeply and that the coma would pass when they said it would, he arrived. He brought Virginia the chemo nurse with him.
He told us he had discussed this matter with other experts across the world and within the Oncology Department. Za had been discussed at conferences and he had researched the literature thoroughly. Based on this solid work he had decided to continue with the protocol. He had to press on with chemotherapy.
I thought I was going to faint. I felt sick. I was stunned.
I told him in a low, deep, clear voice that I really didn’t want him to. He remained impassive.
‘Look at what it’s done to her,’ I shouted, imploring him with outstretched arms to consider my unconscious baby. He was unmoved.
‘She’s in a fucking coma!’ I cried angrily at him.
I shouted, insulted him, swore at him and yelled until I couldn’t choke out any more words. He allowed me to vent and cry then he pointed out the brutally obvious in his clear, intellectual, thoroughly academic way.
This is the essence of what he said. Zali was very sick. She was fighting numerous infections, bugs and viruses. Her body was shutting down as a result. She still had LCH, and it was still active inside her major organs. This protocol couldn’t be stopped. This was the best chance she had to beat LCH. He would finish it while she was in a coma. There were four doses left of chemo if we included today and five days of the coma including today. He would see us after it had finished.
I turned my head away from him as tears rolled down my face. I couldn’t look at him. Andrew stared out of the window in front of us.
I was disgusted. We had no choice. He could do whatever he liked in the name of science. The highly esteemed Professor Kellie represented failure to me. All we had to fight LCH were the crude, clumsy tools of chemotherapy – giant hammers that beat at her tiny bones and organs. These tools were too big and harmful for a sick little body. There was nothing more refined, more targeted, more effective than this brutal attack on her frail body. It was so strong she had to do it while unconscious. This was a huge failure of science. This disease was so dominating and nobody had come up with a better answer than crude tools.
I knew he was right and I was so angry about that. It was so unfair. Unfair on every person in my family. The first try hadn’t worked. If we stopped she would die quickly from LCH. If we continued there was the slightest of chances that she would survive. The path he had picked was the only path and it was a really shit choice. I couldn’t bear to look at him. All my fury would come out in hot, hard words. I would be ungracious and ungrateful and it’s not how I wanted to represent myself. I didn’t feel that way. I was grateful but I was also angry and disappointed and very scared.
Professor Kellie knew when he was not welcome and left.
About an hour and a half later Virginia came in and began the process of hooking up the chemo. She was in full protective gear as she negotiated with the nurse a four-hour space to put the chemo in. This was no mean feat. Zali had a lot going into her through every available catheter, vein and central line. The catheters still came out of both elbows, the tops of both hands, her jugular, both ankles and her scalp.
As well as all available space being used, everything that went through her had to be carefully balanced. Some drugs and infusions had side effects if put in with, or not put in with, other drugs. There had been a careful mapping-out on a computer program to decide what could go in where. Plonking chemo in the middle was difficult. But they did it anyway.
Virginia tried to make some chirpy conversation with us. She tried to connect, tried to engage us in chat about finishing the chemo and how we felt about it. I was having none of it. I brushed her off at every opportunity she offered. I was dirty that this was happening to Zali, and Virginia was part of it. Eventually she got the point. She hooked up the chemo and left. The next lot after that was put in that evening when we weren’t there.
The following day, Thursday 25 June, a male nurse came to do the last day of chemo. He seemed to have a lower status on the ladder than Virginia and I couldn’t help but feel a little sorry for him. As he entered the room it was really apparent that he had been apprised of our dislike of what was happening. If it had been possible, I think he would have slunk so low on entering the room that he would have come in under the door.
He apologised as soon as he came in for interrupting us and for having to put the chemo in. I didn’t say anything to him, but I was taken aback at his apology. Nobody apologises for what they are doing in a hospital. I didn’t look away as he prepared to hook up the chemo and he took this as acknowledgement. He told me quickly how much he hated doing this to Za. He felt so bad about putting in something that would make her feel sicker. He had a little girl of Zali’s age and he would really hate it if someone was doing this to her.
I was grateful for his understanding. I was deeply gutted that this was the only path to follow and I was lashing out at the people who kept putting us on it. Humble apologies and regret aren’t often seen in the hospital, and personal information shouldn’t be offered so easily, but it was a lovely sentiment and I warmed to this self-flagellating man.
Later in the week he brought us a present. It was a set of five Miffy the Rabbit books that his daughter had outgrown. He knew Zali loved to read, and he hoped that when she woke up she might like to read them too.
Chapter 27
Saturday 27 June 2009, 56 days in hospital
9 days in PICU
After the first few days of a coma, Zali came off dialysis. The excess fluid had been drained and the kidneys could cope with the load they now had, albeit with her in a comatose state. It was progress. The day after that she finished chemo, which was also progress. After that it was time to wait out the two days left in a coma.
Over those days, Andrew’s cousins and uncle drove down from Newcastle. Andrew’s other cousin came from Melbourne. His sister Tanya and her children, Zali’s adored and adoring cousins, also came from Cooma. They joined Andrew’s parents and daughter from Cooma, my mum and her husband from Brisbane, my grandma from Bundaberg, my brother Paul from Melbourne, and friends who visited from Canberr
a, the coast and from around Sydney.
By Saturday 27 June the waiting room was full of people who had come to support Zali and us. It was a long wait for everybody there. I told Lachlan to keep out of trouble. The best way for him to avoid trouble was to keep out of the way or stay close to Kala. I trusted Kala to give him direction if he was headed for well-meaning but misguided actions. He is just so naturally full of exuberance and is one of those people who attract attention just by turning up. I told him it was probably best to come and visit Zali but not stay for too long. He could go to school if he wanted to avoid the boredom at hospital or he could play in the Starlight Room, but it was important that he kept out of the way.
Andrew loved having all his family around him. He is close to his cousins and they treated Zali like their own child. When I took a break from Zali’s room and sat in the waiting room I just sat and stared silently out of the window. Everyone there watched me cautiously, wondering what to say and how to approach me.
I stared at the Colorbond rooftop and thought about the weeds growing in the rocks on the roof in some sort of filtration system. I felt my heart beat. I listened to my breath. My eyes stung and were empty of tears and I wondered absently how I could blink them but they still felt dry. I took deep breaths. I watched the clouds. I focused steadily on being numb.
I couldn’t look at my family. I couldn’t face the pain our family was feeling because it was a reflection of my own. I didn’t want anyone to feel sorry for me because the little strength I had might just crumble away if they did.
I waited for the minutes and hours and days and weeks to add up and then pass. I played Snake on my phone, I stared out of windows and I kept my hand on Zali’s leg when I sat in the room with her.
Chapter 28
Monday 29 June 2009, 58 days in hospital
Saving Zali Page 13