Saving Zali

by Lisa Venables

  I finished my dinner and Mum invited me to come and meet some other parents she thought I might relate to. I told her no. She insisted and said she had told them all about our situation and they really wanted to meet me. I snapped at her in front of Adrienne and anyone else within hearing range. I said I didn’t want to meet anyone. I just wanted to eat my dinner and go to bed. I had spent a pretty fucked week worrying if my daughter was going to die and I didn’t want to come and party, dance or worry about Lachlan running around in the dark. I didn’t want to play nice with strangers and make polite small talk. I just wanted to get some sleep for the first time this week. This was not a fun party for me. This was shit.

  I walked to my room and went to bed, and the rest of the family followed not long afterwards. I had killed the mood completely for them.

  This was not a party for me. While they had been at the house seemingly having a good time and living life normally I had been in the hospital with Zali. I didn’t want to be pushed into being friendly and warm, and share intimate details about a horrifying experience with people I didn’t know. I wanted privacy and peace. The life I was leading now was on a completely different track from the rest of the world. I was in hospital world, and I couldn’t simply switch back by leaving the ward and joining a barbecue.

  Even after two weeks in Variety Ward Zali still had RSV. It should have gone by then. Any virus hanging around bothering an already stressed immune system was a problem. RSV itself can cause fevers and could have been exacerbating Za’s condition. A low immune system compromised everything.

  The nurses approached us about using an old technique to combat RSV that had previously gone out of fashion but since been improved. It didn’t sound too bad and I was pretty impressed that there could be a cure for the common cold.

  So we began. There wasn’t much choice, really. The RSV had to go, so Zali had treatment for that while her chemotherapy treatment continued. For eight hours a day, broken into two four-hour chunks, for four weeks, she would have very strong medication. A clear plastic tepee would be constructed over her bed and the medication was pumped in as a mist.

  The most difficult part was that I couldn’t be in the room with her when she was having it. The mist would eventually fill up the room after it went through the tent and it was extremely strong and unhealthy for a well person to absorb.

  I could watch her through a glass pane in the door. If she got upset and couldn’t soothe herself then I could go in. If I went in I had to wear a mask, protective goggles, a shower cap and a full-length gown that covered my arms. Once she was settled I had to leave again quickly. The medication was falling as drops in the air and was absorbed through her skin and breathed into her lungs. It would entirely permeate her failing body, inside and out. She would be a test case for whether this revised technique would be a good practice to adopt in the future. This treatment pattern of high risk and uncertain outcomes would be the ongoing pattern of Zali’s therapy.

  As Za and I had become institutionalised and very dependent on each other, it was extremely difficult for me to leave her. She was still only eighteen months old, so she still needed her mumma, and she was scared and distrusting of everyone else around her. It was decided that one session in the tepee would be at night when she was asleep. The other would have to be during the day when she was having her lunchtime sleep. In general, she slept for about two and a half hours at lunchtime. I thought that I would put her to sleep as it started, and that left only an hour and a half at the end that would be tricky. Books and toys and maybe me for the last bit were the only way I could see it happening. The nurses told me there was a microphone in the ceiling of the room she was in, and that they would monitor her through speakers at the desk if I wanted to go home at lunchtime and have a rest too.

  I only did that once. When I returned at the two and a half hour point she was screaming in her bed and trying to climb out. She was about to pull a catheter out of her arm by leaping over the safety rail to look for help. I ran in and grabbed her and cuddled her until she settled again under the tepee. Once she was happy and settled I put my protective gear on and sat with her until the end.

  I was furious. The nurse appointed to watch her hadn’t turned the speakers up enough so hadn’t heard Za cry. She obviously hadn’t checked on her either. Being busy and distracted by more urgent patients would have been the only excuse that would have washed for me, but it wasn’t that. She just hadn’t checked.

  I blew up and refused to have this nurse ever again. I also never left Zali for that lunchtime session either. There were a couple of times when I had to go in to settle Za, but surprisingly she was often actually quite happy there on her own. I think she may have found the sound of the machine soothing, as she slept longer and only needed to read her books and play with her toys on her own for a small period of time. Being exhausted by chemotherapy made her sleep a bit longer, too.

  The night-time sessions were easy. They meant that I hung out in the family room in the ward from about 7.30 pm, then moved into her room at about 11.30 pm when the session was finished.

  Chapter 13

  Friday 15 May 2009, 13 days in hospital

  Second week of chemotherapy

  Several times in those first few weeks I was asked if I was pregnant. I thought it was because of the potential exposure to chemicals and X-rays during the tests. Then the bone marrow transplant team came and spoke to us about their search for a donor in the second week of Zali’s chemo. They usually began to search for a donor as soon as a child was diagnosed with cancer in case the treatment didn’t work. A bone marrow donation could be transplanted into a sick child’s body as a treatment. The new bone marrow would, in theory, grow and replace the diseased marrow and start to produce healthy blood.

  It wasn’t a sure-fire cure, more like a last chance, and the side effects and problems it could cause were significant. The bone marrow team looked for a match for six markers that are a bit beyond me to explain. The best chance of getting a match for the six markers was with a same-parent sibling. A four out of six could be used under desperate circumstances, but a six out of six was best.

  The most perfect match comes from the umbilical cord blood of a same-parent sibling as the umbilical cord contains stem cells. Zali was Andrew and my only child together. A doctor explained that if we were planning on having another child, now would be the time to go for it because the stem cells in the umbilical cord blood would be the best match to save Zali.

  Yes, a spare-parts child.

  Make of it what you will, but I was faced with the painful, long suffering and eventual death of a toddler I loved that could be stopped by cord blood. Cord blood that didn’t hurt to donate and would end the suffering. If we’d had enough time I would have had another child to save Zali. Created life to save life. I would have done anything. Andrew didn’t agree that this was an option. Luckily I didn’t have to pick between my husband and my child or I would have picked my child and done what was necessary to save her. I would have gambled everything for love.

  As it was, this was only explained to us at the start of chemotherapy, and we didn’t have enough time to go through with that option. By that stage we had four weeks left of chemo, and maybe one week after that.

  The last week of May 2009 came and with it Za’s third week of chemo. My leave was starting to run out, not that I cared. Luckily my boss at Gosford Police Station did care and he intervened, contacting me by phone to talk me through the situation. Usually, on days off, most officers expect that a call from work is bad news. It could mean you were rostered for a random shift you are now late for, or a random training day you are late for. It may be that briefs are overdue or you haven’t booked the evidence in properly. In other words, if work’s calling on your day off, it’s because there’s a shit fight.

  In contrast, my boss called to offer help. He helped me access my long service leave and the last of my sick leave. He told me they would need a report from me to take furthe
r time off work without pay, and then told me exactly what to put in it so that it would go through the process smoothly. He also told me to call Sarah at the Police Association because when the last of my leave ran out in a few weeks they could ask the commissioner for a special favour to pay some limited further leave. Finally, he said he wouldn’t interrupt me during this difficult time but would contact me by email to keep in touch and see how I was going and if I needed any further help. This was an unexpected and genuine gesture and I was immensely grateful for his assistance.

  During this time, my friends from State Crime visited. Mel, Ana and Chris began to come regularly, at least twice a week, and Mel vigorously began to organise a fundraiser for our family. She worked very hard at it, and anyone she spoke to she pulled in to help as well. She sent emails out through the internal system statewide, pushing all the force to help us. She was amazing.

  What made a bigger difference than the fundraising, however, was the visits. Za was quite bored and lonely without her day care buddies, or mums’ group friends. We couldn’t really interact with other chemo kids because of ESBL, and in general other kids were so sick she couldn’t play with them anyway. We had a limited number of toys she played with. She was very fond of the ‘little people’ collections of dolls, cars and animals, but after so long playing with the same toys and the same person, she was bored.

  Mel and Ana both had children of a similar age to Za so it was upsetting for them to see us in this situation and Za in such a poor state, but they were a change we were grateful for. Chris had been a great friend and was upset to see me so upset but it was terrific to see him too. These regular visits, even though they were only for an hour or so, because that’s all Zali or I could manage, made an enormous difference to my boredom and loneliness. They brought books and colouring-in activities and toys when they came, and were simply good friends and broke up the monotony for both Za and me.

  One of Kala’s friends came to visit and brought a jewellery box with costume jewellery and puffy stickers in it. Za loved it all, and felt so special when Kala’s friend carefully placed eight or so necklaces around her neck, a crown on her head and covered both her legs in star stickers. She felt so beautiful, and everybody told her so.

  Lachlan’s football friends visited and brought a teddy and colouring crayons. They didn’t stay for long – they found it intimidating – but Za had always loved hanging out with her older brother’s mates, and she was generous in sharing further stickers. The boys sat still while she carefully placed stickers on their faces in sombre acknowledgement of their effort. The boys didn’t remove them until they were out of the room.

  Each day Lachie had breakfast at RMH with Kala and Andrew then walked over to the hospital to see me. Andrew would stay at the house for a while tidying up, getting the clothes washed, sorting out Kala’s needs, paying bills and replying to family and friend messages.

  Lach would start school in the hospital at 9 am but it wasn’t strict. At lunchtime he came back to Zali’s room and I organised lunch for him, then he went back to class. After school he would play games in the Starlight Room or hang around at RMH. It wasn’t an ideal set-up. A lot of the time he wasn’t supervised, but it was the best I could do.

  One lunchtime he came up to Za’s room. I hadn’t organised anything for lunch, so Andrew gave him ten dollars and told him to get some food, eat it in the family room at the end of the wing and come back when he was finished. Lach was comfortable getting his own lunch – the whole hospital was so child-friendly. He left with his usual lopey uneven run and returned not long afterwards having eaten lunch. He told me he had a hot chicken roll for lunch, which sounded pretty tasty.

  That afternoon after school I walked him back to RMH and stayed there that evening. The hospital had told RMH that Zali had RSV so the family had been moved into a very small unit within RMH so we didn’t pose a contagion risk to other families of immuno-compromised children. Because it was so small, the room got messy very quickly. I couldn’t be bothered tidying up that night, but in the morning I asked Kala and Lach to help me tidy up before I went back to the hospital. Neither of them was very happy about doing this. Kala grumbled and sulked and Lach just lay on the bed doing nothing.

  It’s not like Lach to straight-out refuse to do what I ask him. In general, he is a well-behaved boy. It’s more like him to argue while he did what I asked, but he wasn’t even doing that. I shouted at him but it didn’t make any difference. Time ran out and I had to be back at the hospital. I left a frustrated Kala cleaning up the mess. No sooner had I stepped in the hospital room than Kala sent me a text. The message said I should come back because Lachlan was waterfalling. I replied that I didn’t know what that meant. She said he was vomiting and it was coming out like a waterfall.

  I went back to RMH quickly and collected Lach and returned to the hospital Emergency area. Dr Rainbow saw us very quickly. Honestly, that was her name. I didn’t know why Lach was sick. Nobody else apart from Zali was vomiting.

  As the doctor started questioning Lachlan about his symptoms she concluded that it sounded like he had food poisoning. I was surprised, as he hadn’t eaten anything different from us. Except for lunch.

  Lach piped up. ‘I think I know what I ate that was different to everyone else.’

  ‘Yes, baby, tell me what you had,’ I answered, giving him a cautious cuddle.

  ‘Yesterday I wanted to eat lunch really quickly and get back to you so I got some food from the machine,’ he said.

  ‘What machine, Lach?’ I wondered.

  ‘The machine near the steps,’ he replied.

  The vending machine. Lach had got his chicken roll from a vending machine in the hospital, and had reheated it in the family dining room. The microwave in the family room didn’t work very well and he hadn’t heated it for long enough anyway. It had been lukewarm when he had scoffed it down and, as we discovered from the wrapper, it was out of date. He started crying as he realised his mistake. He just felt so miserable. He vomited a bit more just to complete the misery.

  ‘Oh, baby,’ I said soothingly, laughing a little. ‘Lukewarm anything from a vending machine is a terrible idea. I’ll have lunch with you from now on.’

  ‘Thanks, Mum,’ he replied, wiping the tears from his eyes and the vomit from his mouth.

  It took three days for Lach to get over the food poisoning. Dr Rainbow was horrified that food sold in the hospital would make someone sick, and hospital staff removed the offending food from the vending machines immediately.

  Chapter 14

  Friday 5 June 2009, 34 days in hospital

  Fourth week of chemotherapy

  The days wore on, full of tests and horrible procedures, and I relied on adrenalin to get me through. I treated my own sad feelings like I would a victim’s feelings at work, by disassociating myself from the pain so I could do what needed to be done.

  I wouldn’t think or feel, just act. Through the scariest or saddest parts I just went through the motions, did what needed to be done, hoped that adrenalin would give me the edge I needed to cut through. When the hard bits were over, when there was a break, I would let what had happened wash over me, but each time I felt as if I would break in two from the pain.

  In the first week of June, during Za’s fourth week of chemo, I met Francis and the Frenchies and my sadness eased.

  Andrew is much more sociable than me. He is always meeting new people, and you can usually guarantee that through conversation he will find out that those people are either related to him and his enormous family, or grew up in Cooma and know the same people as he, or grew up in Crookwell. It made sense, then, that he would be curious about, and want to meet, the people who also lived in RMH. In particular, he was curious about a cool old New Caledonian dude called Francis to whom he had been waving a casual good morning each day.

  The Children’s Hospital at Westmead has a program whereby it treats New Caledonian children. A lot of the native Kanaks live very traditional lives o
n the little islands around the main island of New Caledonia and they use a naked fire inside their home for everything. The burns the children sometimes sustain from these fires can be really awful, and the hospital treats these injuries. The New Caledonians also brought over children with cancers and tumours.

  Andrew spotted the older man when we first moved into RMH. He appeared to be the leader of the group of Kanaks. About a week later we had to move out of RMH and into a new unit owned by RMH two minutes’ walk further up the road.

  As Andrew walked to the hospital each morning he passed the old man walking slowly in what we called ‘island time’. Nothing ever made the New Caledonians hurry. The old man was always in tracksuit pants, long-sleeved shirt and a yellow home-knitted beanie donated to RMH. He had wild, frizzy grey and black hair that stood up on top of his head. He had brilliant white teeth that shone when he laughed and cheeky, mischievous eyes. I’d say he was in his sixties but it was impossible to tell. Each morning Andrew and Francis would give each other a brief index-finger wave or a nod.

  One day as we were getting a coffee while Zali slept, we saw Francis in the corridor and Andrew seized on the opportunity to meet him. He had heard Francis speak French and thought that as I spoke French I could converse with him.

  ‘Excusez-moi, monsieur,’ I started shyly. The man stopped and put out his hand to Andrew. Andrew shook it and was delighted, breaking out in a giant grin.

  The man held his hand out to me. As I shook it I was shocked. His hand was soft and warm and dry. The grip was gentle and loving and I felt like I had been given a warm reassuring embrace from my grandad, not a formal handshake. I immediately felt calm and happy.