Saving Zali

by Lisa Venables

  ‘C’est ma marie, André.’ (This is my wife, Andrew, I said.)

  The man gave me a gigantic smile. ‘Francis.’

  ‘S’il-vous-plait, excusez-moi le français. Je parle un petit peu et c’est horrible.’ (Please, excuse me the French. I speak a tiny bit and it’s horrible.)

  Francis nodded in agreement and said ‘Oui’ with a big smile. We both laughed.

  Francis took my terrible French spoken in a broad Australian accent with grace, dignity and humour. Now, to be fair to myself, I should explain. I did French in Year 7 because we could visit New Caledonia for the school camp. We played a lot of games, learnt directions to the library and how to order a ham sandwich. At uni I did it for one year. I passed on 50 per cent because I did extra assignments. I really suck at French.

  Luckily for us, Francis was patient, and his group of Frenchies spoke varying degrees of English, so between us all we made out okay. Francis was there with his granddaughter Solange, who was having a tumour removed from her eye.

  Up until meeting Francis I had barely left Zali’s room. I was so tightly clenched, trying to restrain my fear and panic, trying to deny what was happening, trying to understand this new world with its new language and risks and rewards, and most of all, trying to hold onto Zali. I barely slept, barely ate and didn’t see anyone unless they were visitors to the room.

  After meeting Francis, though, I could see that Andrew and Lach were getting on with hospital life. I was curious. They were making friends in the big RMH house, which they still visited daily, and they were trading gossip or taking part in the Friday-night dinners and finding out about the people and places around us.

  As I released my tight grip on everything around me and starting talking to Francis and his crew of New Caledonians, the world began to open up to me in a way that was completely unexpected.

  I learnt that what was happening to us was not the worst thing that could ever happen to anyone, and that we were not the worst off. In fact, we were very lucky. There were people around us making all sorts of quality-of-life decisions that we didn’t have to make. One family was choosing whether to have radiotherapy on their six-month old baby’s brain tumour and cause brain damage, or leave the tumour until the baby was a bit older and stronger and it could be operated on, hoping they had enough time up their sleeve to do so. Another family chose not to operate on a tumour that was in an extremely difficult position with only a small chance of removing enough of it so that it wouldn’t grow back.

  There were families who had run out of treatment options and couldn’t find a match for bone marrow transplants. There were parents who had unwittingly injured their children; children run over by family cars, with hot water spilt on them, dropped in fires, injured in car accidents and, sometimes, victims of abuse. There were parents whose marriages weren’t surviving the stress and who were fighting in their children’s rooms. There were single mums with not one family member to help them and there were people who had to leave their families and friends in country towns many hours away to get help in the city.

  On the other hand there was us. We had a steady stream of vocal and strong support from family and work colleagues and friends. It was an unusual day for us not to have visitors. My mum and Andrew’s parents and sister came in a regular rotation and stayed with us or booked rooms in hotels nearby. My work friends came, Carissa came, and some mums from the mums’ group came. We spoke English and understood what the nurses were saying to us, which the New Caledonians did not unless there was an interpreter with them.

  There were no quality-of-life decisions for us. Either chemo would work or it wouldn’t. We hadn’t caused this directly or by some horrible mistake. Despite my feeling that I was carrying the biggest part of this load, I knew that Andrew was working as hard as he could out of the hospital to keep our life going. He supported Kala and Lachlan as best he could, he washed the constantly soiled clothes, he collected and collated bills, he hosted family visitors and kept our friends up to date with our goings-on. He was also jumping through various hoops the police were setting for him to prove he had PTSD.

  Our marriage was being tested but wouldn’t break, and even though we were unhappy, we did have each other. It was very humbling to know that I was in a hospital full of individual families fighting through the worst thing that had ever happened to them, and that we weren’t the worst off.

  Chapter 15

  Monday 15 June 2009, 44 days in hospital

  Sixth week of chemotherapy

  Lach was acting up in hospital school. The teacher spoke to me when I went to fetch him on Monday lunchtime in Zali’s sixth week of chemo. She said that he was disruptive in class. He was naturally exuberant, but he did not fit in. He was the oldest in a class really meant for inpatients.

  ‘Why, how doesn’t he fit in?’ I asked, embarrassed that he stood out so badly.

  ‘The other children are in wheelchairs and communicate slowly, if at all. Some don’t speak English. Some have mental health issues from child abuse, or braces around their heads from car accidents. All of them are institutionalised to some level,’ she said. ‘Lachlan is a healthy, strong eleven-year-old who needs to play with and talk to other boys his age. For example, we were learning French words today for the New Caledonian patients so we could communicate with them. Lach made a rude joke about what these words sounded like. Luckily I was the only one who heard it or understood the joke. At lunch the boys in the wheelchairs were doing puzzles while Lachlan bounced a fit ball. They’re normally used for physiotherapy done in the class. Lach bounced it too high and when it landed it messed up their puzzles. He just needs to be around children his own age,’ she concluded.

  A heavy silence lay between us as I realised what she was saying. He wasn’t being expelled, but it was being strongly suggested that I put him with other healthy eleven-year-olds.

  I took a deep breath and thanked her for her honesty. As I walked away I wondered what to think about it all. Was I angry Lach couldn’t bring his personality under control in a room full of disabled children? No, not really, it was a big call for a young, active boy. Was I angry that I hadn’t realised the school wasn’t really for him? Well, yes a little bit. Cecelia had said there was a school in the hospital and I had leapt at the chance to have him close. I should have investigated further to see whether it would be appropriate. Did I think it was funny that Lachlan was being kicked out of hospital school? Yes, it was. Andrew came in later and I explained what had happened.

  ‘Jee-sus burgs,’ he said to Lachie. ‘Mate, you’ve been kicked out of the school where kids can’t even write their own names.’

  I spoke with the ladies at RMH that night and they gave me the names of neighbouring schools. Tutoring was not available for children who were missing school because of a sibling’s illness, but the Northmead Public School was very good and I enrolled Lach for the second half of Year 6. He was thrilled.

  It was really nice to walk Lach to school in the winter sun while Andrew watched Za. When I picked him up from school that afternoon he was surrounded by friends who were jumping about in lively conversation. He said he had had an awesome lunchtime. He played this game with his friends where you throw the football to someone and everyone has to try to tackle them.

  I said, ‘Oh, football?’

  He said, ‘No, just “Tackle the Person with the Ball”.’

  I laughed and told a family friend that night about the game.

  He replied, ‘Oh yeah, “Kill the Dill with the Pill”. All boys play that game.’

  I was so pleased that Lach had got some normality back into his life. He could have some fun in his day and not think about the hospital. Kala said by far the worst feeling for her was leaving each day and not knowing if Za would be alive when she got back. For Lach it was the opposite. He needed to get away from the pressure.

  One Wednesday morning towards the end of June 2009 I sat in the sun at a picnic table inside RMH with Francis and Laurent, a New Caledo
nian who spoke excellent English. We were sharing an amicable silence and a cup of tea. Francis was wearing a new knitted beanie made by one of the volunteers. It was dark green and yellow and was pulled down over his fuzzy grey and black hair. He really felt the cold. It was so different from his tropical home.

  Zali had been given a strong dose of opiates and would be asleep for at least another hour. As we enjoyed the winter sun through the glass doors a well-heeled woman took centre stage in the communal lounge room. She had carefully dyed blonde hair expertly shaped into curls. She wore expensive flawless make-up and pressed black linen pants. As she spoke loudly on her mobile phone it was clear she was making a public statement that she didn’t belong here because she was different from the rest of the suffering families. She told the person on the other end of the line that she had spoken to Barry her brother-in-law – you know the expert doctor in whatever field at a posh exclusive hospital? She had told him to find out who was the best and she would fly there immediately and get her son treated by the world’s best, because this tumour her son had on his brain was really rare, not seen very often. Barry told her to stay put, stay exactly where she was, because the world’s best in this field actually worked at Westmead Children’s Hospital. Dr Luciano Dalla Pozza was an internationally respected oncologist and if her son was under his care his unique tumour would be treated correctly. She was also changing her family’s diet to a wholly macro-organic diet because nutrition was essential in this life-or-death battle.

  I knew she felt important. I knew she felt like this couldn’t be happening to her, that diet was going to bring them out of it, that she and her son were different from other families here. Her son was better, special, and she would push for and get the best.

  The fact of the matter was that every family who was here for cancer was under the care of Dr Luce Dalla Pozza and his crack team of experts. Every cancer and tumour that exists in every person is unique. That is why it’s so hard to treat. Barry hadn’t given her any insight that Francis couldn’t have given her. In fact, Dr Dalla Pozza was treating Francis’s granddaughter for a tumour, and Laurent’s son had just finished a bone marrow transplant after going through treatment coordinated by Dr Dalla Pozza.

  No amount of money or North Shore private school connections could change the fact that she was here, in a charity house, fighting cancer the same as the rest of us. We were all shocked that this was happening to us. Despite her inflated sense of importance, I did feel sorry for her. Eventually, she would be initiated and get the hang of the system and stop resisting. It would be a horrible smack in the face when it happened.

  This was the best. Everyone was trying their hardest. Cancer just sucks.

  Chapter 16

  June 2009

  During Zali’s chemotherapy

  During our stay in hospital we thought about Zali’s suffering all the time – how to reduce her pain through pain relief, how to fix the disease, how to get her to eat and stop losing weight, what medication would reduce her nausea, how long since she’d had Panadol to reduce her fevers, changing her sheets covered in bodily fluids. We wrestled with the fear of her death, the struggle of watching her being pinned down while painful things were done to her, knowing the bone-aching pain that would make an adult lose their mind. She had been taken off morphine, because it was not strong enough, and put on a fentanyl drip that was better. Fentanyl is an opioid 100 times stronger than morphine and it’s commonly used for cancer treatment. It only just took the edge off Zali’s pain.

  I started experiencing terrible grief. Sometimes it was sobbing in private in the shower at the unit. Most of the time it was silent tears in the hospital. I would be surprised if it was a sunny day outside and people were out having lunch and laughing with their friends. I watched with curiosity as young gardeners made halfhearted attempts at pruning the plants around the place in cool winter temperatures. How could the world not be more worried?

  This grief made me stay with her all the time that I could. I would stay for four days in a row, day and night in the hospital. Andrew would come during the day but it was never enough for me. Even if he had been with me the whole time it wouldn’t have been enough. I was really lonely without him. Lachlan would come to the hospital and beg me to watch him play video games in the Starlight Room. I would tell him I couldn’t go until Zali was asleep and then I could only spend a short time with him in case Zali woke up. The nurses always said they would stay with her if she woke up, but several times she was screaming when I came back to her room and no one was there, so I hated to go.

  Lach wanted to talk to me about how Andrew was looking after them but was always sad and always thinking about Za. He wanted to talk about how isolated he felt, how he missed home, he missed his friends, his Xbox and riding his bike on the street. I just couldn’t listen to him say those things. I missed all of that too. I didn’t have the room left in my head to sort out how to meet his needs. All my parental ability to make my children happy was taken up by LCH. It was a cruel punishment to Lachlan for something he didn’t do.

  He loved Za. He knew she was dying and he was sad about that too. But he was trapped and lonely and needed me, and I couldn’t be there for him. I was disconnected from him. I felt terrible about what he was going through but I just couldn’t reach out from my parallel world into the normal world to help him. I didn’t have anything left for him. This guilt compounded the grief I was feeling.

  Thank goodness other people were picking up the tab.

  Robert is Lachlan’s uncle on his father’s side. Lach adores him and his cousin Dale, and spending time with them really alleviated his stress. He loved to cook with Robert and they just hung out playing football and watching DVDs at his house in a nearby suburb. Getting away for the weekend with his uncle was a refreshing break for him. Andrew’s mum and dad came regularly and that made a big difference to Lach too. Kath and Rob would stay at our place. They cleaned the unit, cooked dinner, walked Lachie to school, washed our clothes and then came into the hospital and stayed with Zali, Andrew and me for a couple of hours, but not too long because they had Kala and Lachlan to take care of.

  One day, as I was returning to our unit in the car after shopping for some groceries, I saw Kath leaving the hospital late to pick up Lach from school. It was about a twenty-minute walk to the school from the hospital. I slowed down and asked if she wanted me to get him or if she wanted a lift. It was long journey for her on her little legs.

  She said resolutely, ‘No, I said I’d get him and I will, I’ll just hurry.’ With that she put her head down and powered ahead, those little legs a blur under her they were going so fast. She picked him up on time. She was not going to let us, or the kids, down.

  When they were at the hospital I could get a coffee without feeling guilty. Sometimes they stayed with Zali while I did something with Lach, or Andrew collected Kala from school in the city. Then we could pretend that the situation was just one of grandparents visiting.

  When my mum and Gavin came to visit they took Lach to Taronga Zoo or my mum would cook with Lach, which he found comforting. They also just hung out with him as he played at RMH, and he’d tell them rude jokes and stories. When they took him out it occupied his mind with something that was not disease-or hospital-related, and that made an enormous difference to him.

  Kala was the one who took up the most slack with Lach. It wasn’t fair. It wasn’t her job, it was too much responsibility, and she was lost and sad too, but she did it naturally. Lach found great comfort in Kala just being there. She could be moody, sulky, spoilt, selfish and distant, just like any teenager, and he loved it because it was just her being her. When she was warm and sharing and open he felt closest to her. She looked out for him, stuck with him when he was bored, told us if there wasn’t any food in the cupboards, or sent him to bed if we were home too late to do it ourselves. She wouldn’t let him watch anything too violent on TV and wouldn’t let him walk home from the hospital or RMH on his own in the da
rk. If she was there when he was going to school she wouldn’t let him go with a bad hairstyle, and she’d make sure he looked and smelt good. Good, bad, grouchy or friendly, she was there with him and for him and she played a major role in his survival.

  Kala felt lonely and abandoned too. This should have been an incredible time of achievement for her. She was at her dream school, preparing for her dream job of being a dancer. Andrew was unable to support her enough emotionally for her challenges at school because he was totally involved in what was happening in the hospital and was recovering from PTSD himself.

  We weren’t organised enough to have food prepared for her lunches or even any food in the kitchen really, and dancers need constant refuelling. She caught the train to school very early in the dark, and returned home in the dark. Usually she walked from the station on her own, cutting through the hospital and then up the road to the unit. Sometimes nobody else would be there when she got home. She wouldn’t usually stop in at the hospital to see Za because she and I weren’t close. It was awkward between us. I wanted to comfort her, and she wanted comfort, but we didn’t have the relationship to do that.

  It was the same combination of fear and love she felt for Zali that Lachie had. She hated going to school, because she was never sure if Zali would still be alive when she got home and didn’t want to leave her. Horrible things would happen while she was gone. Conversely, she didn’t want to stay at the unit. It was boring and scary. School offered the best support to her for her feelings of frustration, anger and loneliness.

  Sometimes, there were several days in a row when I’d stay on my own with very little contact from my family. I was exhausted when we were in the Variety Ward, and this made everything seem harder to deal with. I felt frustrated at the thousand and one complications that came up at the hospital. I was frustrated that Andrew spent more time out of the hospital than I did and wanted him to be with me more. I was disappointed I couldn’t be with Lachlan as much as I wanted to be. I was afraid our only treatment wasn’t working.