Saving Zali

by Lisa Venables

  The biggest shock for me was that after months and months in hospital with 24-hour medical care only metres away from my sick child, we now had nothing except for brief check-ups. I didn’t trust myself to know how to handle an emergency if it came up. As Zali was still so feeble and fragile it was very possible that one would. She was slowly getting the hang of walking again, her voice was coming back but slowly, I had to toilet-train her, and she still had a central venous line. She was still vulnerable and so were we.

  I found my stride gradually when I began Zali’s round of rehabilitation therapy and visits to the Children’s Ward in Gosford Hospital to get her line flushed. The hospital was a familiar place to me now, and we met other families who were there to get their children’s lines cleared as well. We weren’t the only people with kids fighting through cancer and it felt good to have this solidarity. As ghoulish as it may sound, it was reassuring to have a balance in our life of hospital and home life.

  Gosford Hospital was brilliant. They were caring and reassuring. The doctor who originally thought Zali had something seriously wrong, Dr De Courcy, worked from there and was the paediatric oncology specialist. I could call directly if something was wrong and get immediate advice. My fail-safes were in place and I didn’t feel so much like I was doing all of this on my own.

  Chapter 59

  25 December 2009

  We had given both of the older kids the choice of where they wanted to spend Christmas. Kala was keen to go back to Cooma where her mum and Danni were. Lach wanted to stay because that’s what would have happened if Za hadn’t been sick. I had no idea of how to prepare for Christmas, and it would have been difficult for me to take Zali around the mall getting everything ready. Luckily, our next-door neighbour Karen invited us to have Christmas with her family. It was a huge relief and a very generous offer.

  Christmas morning was very warm and sunny and we headed straight to the beach after opening presents. It was very busy at the beach and it felt like we saw every person we had ever met in our whole life on the coast. We chatted with everyone, surfed and watched daring teenagers jump off the rocks into the water below. We were so relaxed and happy it was a perfect Australian Christmas morning. When it got too hot we headed home. Zali had a sleep, we all showered off and when Za woke we headed over to Karen’s for a latish Christmas lunch.

  Karen is English and does a ‘proper’ Christmas lunch really well. The tables and kitchen benches were heavily laden with every type of Christmas food imaginable, both hot and cold. We brought over a giant ham and prawns. I played Guitar Hero with my kids and hers, bashing out the beat on the drums completely out of time. I defended little Gracie from her brother and Lach when they criticised her singing because it was horribly out of tune, out of time and the wrong words. I told her she was great and we should make a band together.

  At the table Karen’s Irish friend told tall tales that had us laughing and literally falling off our seats with disbelief, then he calmed down and had a little nap at the table. Tony, Karen’s husband, bragged that he had cooked all the hot food, which he hadn’t, and criticised Karen’s bread rolls, which had become hard and deeply caramelised in the oven because it was too hot and she had been yelling at us to hurry up and come to the table and had forgotten them. I defended the rolls and said they were lovely and just needed a bit of soaking in the gravy on my plate, like, maybe for the rest of the day.

  We ate until we were so full we could have burst. In the afternoon the children showed off their new toys, played new games, rode their scooters on the street and eventually we went back home, next door. We had tea and mangoes for dinner. Perfect.

  On Boxing Day my youngest brother, Glenn, came to visit. I call him my little brother as I am the oldest of three kids. He is little in age, not in size. He’s six feet five inches and about 95 kilograms. Lachlan adores both of his uncles and there is little room for anyone else to exist in his world when they are around. Lachlan talked and wrestled Glenn and was over the moon to see him. Glenn was happy to just hang around the house with us and pass the time.

  The bubble did have to pop, though. I had been putting off the inevitable, but by the time Monday came and festivities were over it was time to get the line flushed.

  Chapter 60

  28 December 2009

  Getting the line flushed is a tense time. We all knew that Zali’s line had three types of bacteria in it as well as a colony of the treacherous ESBL hospital superbug that can’t be killed but can kill through sepsis. She was also constantly on antibiotics for the other beasties living in the line. The options to address the problem were to fill the line with some amazing liquid that would possibly clean it, remove it and replace it with another, or remove it altogether.

  We went to Gosford Hospital on 28 December 2009 to get her line flushed. It had to be done weekly but I suspected it was infected and that flushing would result in sepsis, so I had put it off by two days. We went in and sat with three equally grim families waiting for lines to be flushed. All of us hated it because it could result in septic shock that could kill our frail treasures. I bit the bullet, the line was flushed, and we went home.

  Twelve hours later Za was in my bed when she started tossing and turning with a fever. Andrew called the hospital immediately and I took Za to the car. I left Glenn a note on the bench telling him what had happened and to look after Lach until I got home. I held Za in my arms as we raced to the hospital and she started vomiting. We got to Emergency and went straight through. She was limp and listless in my arms, unconscious but breathing. The nurses and doctors immediately began to work on her, putting antibiotics and the like through the line. Within about an hour everything was under control again and we were put in the children’s section of Emergency.

  It was about 2.30 in the morning and we were all exhausted. I lay down on my side next to Za in the bed. My arm was placed awkwardly under her neck, her head resting on the pillow. This was her favourite position, as I couldn’t move away without her knowing. My arm often went to sleep like this, but it was the only thing that slept well.

  As she slept I just waited, staring at the dark walls. I felt something change in her position and I rolled over a little to look at her face, turning on the light above us. I thought she might have been sleep-talking because her eyes were open and she was grunting through clenched teeth. As I looked into her eyes I could see her looking into my face desperately scared and frantic. She sounded like she was trying to cry out but couldn’t. Her body was as limp as her face was rigid.

  ‘Nurse!’ I shouted.

  As I watched her face for a sign of what was wrong her eyes changed focus. She wasn’t looking at me any more. Her eyes were open, but vacant. I could feel her spirit pulling away from me, whirling up quickly out of her body and out of my world. She was racing away faster than I had ever seen this happen.

  I said to her quickly, ‘Za, it’s okay. Hang on. I’m here.’

  ‘NURSE!’ I screamed.

  Za was having septic shock. The nurse ran in and looked at Zali’s face as I climbed out of her bed and stood next to her. With once glance at Zali the nurse smacked the alarm button hard against the wall and shouted out for help. She started preparing oxygen. Every nurse and doctor available came running in. The emergency toolkit was run into the room and the nurses immediately began to prepare double strength of two types of adrenalin.

  Under the direction of the doctor it was put into her central line while they barked medical orders and information at each other. So many things were being put into her. Numbers were being shouted out. Zali’s eyes closed and the shuddering stopped. The machines beeped slowly, slowly, slowly. The numbers on the monitor next to the bed sank downwards to a level I knew couldn’t support life.

  I sank onto a chair. Andrew dropped into his. The numbers blanked out on the monitor, disappeared completely and alarms screamed hysterically. The nurse slapped the monitor and silenced it for a moment.

  I should have been told to leav
e the room. I should have tried to hold her hand but I couldn’t move from my leaden position in my chair. I felt pinned down. It can’t end like this, I thought desperately. We had finished with hospital. The disease was beaten. How could it end like this?

  I could feel an intense lightness in the room. It seemed very bright and the room seemed to be sparkly and shimmering. There is probably a medical explanation for this feeling, but any person who has experienced it knows what it really is.

  I could feel death enter the room.

  It was heavy and undeniable and it was here for her. It was rolling in through the room and waiting above her bed. It was untouchable, unfightable. I could feel Zali floating. Her body wasn’t of any consequence to her. She was calm and peaceful. A choice was being offered to her. With the slightest agreement she could die immediately and float away from her aching body. I held my breath as I watched her, waiting for her decision.

  It wasn’t peaceful for me. It was a screaming, terrifying horror. I was trying with everything I had to fight this but I felt like I was pinned down by a heavy weight. My legs wouldn’t hold me up, my arms couldn’t move and I couldn’t talk. The room was spinning and bright sparkles shone in my eyes as I tried not to faint. This was a decision that had nothing to do with me. This was a personal conversation between Zali and Death.

  I wanted to interfere. I wanted to scream at her to stay. ‘We can fix this. Don’t go. The answer to the question is no.’

  A nurse was in my face saying, ‘Tell me if you’re going to faint and I’ll get a bed for you.’

  I groaned, ‘No, no, no.’

  Another nurse shouted, ‘It’s not working, the adrenalin’s not working.’

  The alarms began to scream, some of the coloured numbers dropped out completely and all that was left was blood pressure and heart rate. Blood pressure falling, falling, falling – 48 over 25. Heart rate dropping, dropping, dropping. I could hear my own heartbeat in my ears and feel it pound in my chest.

  Then there was silence. Complete silence in the room.

  The original nurse I called for grabbed Zali, ready to run down the hall to the resuscitation room. As she slid her arms under Zali’s bony, limp frame the alarms stopped screaming. Every person in the room looked at the monitor.

  The heart rate number came back on the screen. A normal steady beat like a person who had hit the ground full pelt and is pulling up to stop – 165 beats per minute, 150 beats per minute, 135 beats per minute, 120 beats per minute, sleeping at 115 beats per minute. Still a bit high for someone normal who is sleeping, but for her, because of the calcium still on her heart, it was fine. Respiration normal; sleeping rate, blood pressure perfect, oxygen 100 per cent.

  Zali was back.

  Za didn’t open her eyes but I felt death roll away like fog exposed to sunlight. The heaviness left me and everything quickly returned to normal. Andrew and I went over to her bedside and looked at her.

  Zali’s two-year-old face looked exhausted as she slept. She looked like an old woman. There were large dark circles under her eyes, I could see the veins in her forehead and she looked battle-weary.

  We were moved into the resuscitation room for good measure, where she slept soundly – although nobody around me looked like they ever would again. After a CAT scan the next day and blood and urine tests, we were told the septic shock had come from bacteria in the line. The decision was made with our oncology team for the line to be removed that week and never be flushed again.

  Chapter 61

  2 January 2010

  New Year’s Eve came and went as Andrew or I stayed with Za in hospital over those next couple of days. The day after the New Year holiday I went with Zali as she was transferred to the surgical theatres to have the line removed. The handsome, keen, young vein specialist who would be removing the line met me before we went in. I could see he was a little nervous. He told me he had put in and removed plenty of central venous lines in adults but this was his first on a child. It was a serious operation as he was working near a major vein and artery but it was certainly an operation he was comfortable with. I think I had more faith in him that he did, and I told him we were comfortable with the idea of this surgery and I would just wait until they were finished.

  Za came out of surgery about an hour later and I sat next to her while she came out of the anaesthetic. I could see a bandage on her chest where the line had been removed. I was so amazed to see her chest without the line. In fact, I thought she looked a little bit bare, but I was very relieved it was gone. The visible connection to cancer had been surgically removed.

  The surgeon came over while I waited and was apologetic. As he had removed the line her skin had torn a bit because it had become attached to it. The skin was ragged where he had removed the line and in order to leave a neat cut to avoid further infections he needed to cut the skin further. He had sewn it back together in a new straight wound on her chest. The result would be a two-inch scar under her right collarbone, which is larger than the usual scar left by this operation.

  I started to cry.

  Zali’s chest and stomach were covered with scars where she had torn her skin apart because of pain and hallucinations. Some of the scars were fifteen centimetres long and one centimetre wide. Some were still healing. She had bedsores on the back of her skull and along her spine from lying in a bed for so long in PICU. She also had a scab on her nose from constant irritation from the intubation.

  This beautiful, careful man, with no idea of what we had been through, was telling me that his small neat scar removing her central line was more than he had wanted to put her through. I was overwhelmed with gratitude to him that in that one explanation he had reduced our problems to such a small scale.

  In January 2010 the line came out, the disease was inactive, and this lovely man was sorry about the small scar.

  Chapter 62

  The afterlife

  Just as Za’s line going in indicated the start of the most difficult time in our lives, the removal meant its end. Zali didn’t need the line any more because she didn’t need any more blood or blood product transfusions, she didn’t need chemotherapy any more, and any medication she was having, she was taking orally.

  We saw Professor Kellie once a week when the line first came out and Zali had physiotherapy and speech therapy as an outpatient in Gosford. She got the strength back in her legs about three weeks later, and three weeks after that she started swimming lessons. I cried after her first lesson as she kicked and paddled, kicked and paddled, as if she was any other toddler learning how to swim. Those legs wiggling through the water were such a huge achievement.

  Over the following year and a half the medications she was having were reduced then stopped. With the reduction in medications the visits to specialists and therapists decreased and then stopped. We saw them every three months and then we stretched to six. We also saw Dr Munns for a while and still see the cardiologist once a year. Za always throws up on the way, but it’s the only time she ever vomits.

  Zali’s had one fever in the last three years. It lasted four hours and the next day she was fine but had a bit of a cold. There have been no rashes, and whenever she’s become ill, it lasts the normal amount of time and then it’s gone. Her hair has grown back, mid-length blonde hair about which she has firm opinions when it comes to hairstyles. In fact, out of all of us, she is the most robust health-wise. She’s four years into the five-year ‘long-term survival’ period and is still cancer-free. Last time I saw Professor Kellie he said, ‘It looks like it’s burnt itself out,’ as if he was casually remarking that I was wearing jeans. Pretty amazing.

  The gentamicin did adversely affect Zali’s hearing. She has mild to profound deafness, but with hearing aids she has complete hearing. She doesn’t talk with a tonal sound and you wouldn’t know to listen to her how little hearing she has.

  I was surprised when I was told she can’t hear soft sounds like the letters ‘F’, ‘S’ or ‘K’. I told the audiologist we were
having difficulty with her swearing. She was saying ‘Fuck’s sake’ clearly and appropriately, such as when she spilt the milk for her breakfast, or Lachlan kicked a ball at her and it bounced off the deck. These words have a lot of soft sounds in them.

  The audiologist said that her commitment to offensive language was a great sign for her speech therapy. She could remember how those sounds were made and she was faking it to get those words out.

  She wears her ‘plugs’ and is catching up really quickly with her language. She swims, goes to dancing and plays at the park with her friends, where her favourite activity is the flying fox. She is an awful sleeper and still wakes at 11 pm and 4.30 am. It’s probably PTSD from her time in PICU but it’s just something we’ll ride out. She’s tough, bossy, sooky, funny, outgoing, shy and active. She loves school, is on the SRC, has made great friends and loves her homework – much to Lachlan’s annoyance. He thinks she’s a total nerd. She’s everything a normal five-year-old should be.

  Andrew Venables Plumbing has never looked back. It’s a rare day that he doesn’t have much on, and he just loves his life and the work he does. Friday afternoons are beers on the corner with the other dads on the street, Saturdays are spent having a cafe breakfast and bumming around at the beach or in the garden, and Sundays he takes Lachie motorbike riding.

  Lach started high school in January 2010. He was a full year behind in skill level and needed tutoring as well as a lot of encouragement at home to get homework done. Motocross magazines helped improve his English skills. Whatever it took to catch up, however he needed to get there, was fine by me. He saw a psychologist to get his anxiety attacks under control and learnt deep-breathing techniques to help, and has not had a panic attack since Za left Westmead Hospital.