Saving Zali

by Lisa Venables

Every day that week I had asked the various doctors if they had the results of the bone marrow biopsy yet and they all said it would be Friday. I was feeling battle weary and war ready. I didn’t know if I could handle any further bad news, but I am not a patient person and didn’t want to wait any longer.

  Finally, at 5 pm Professor Kellie arrived with his two offsiders. Although it was the end of his day, he didn’t seem to be in as much of a rush as he had been the previous day when I first met him. Professor Kellie was a medium-build gent, with spiky grey-black balding hair and half-moon glasses that clung to the end of his nose. Gent is the correct term for him because when he looked over the top of his glasses and spoke in his slightly English accent he looked like a professor from a private English school giving a lesson. He wore a plain shirt, a bow tie, slacks and trendy pointed black shoes. His outfit was an odd mix of old-fashioned manners, tradition and modern flair. He had broad shoulders that were rounded inwards and he spoke quietly leaning in towards us as he talked.

  He told us he had news about Zali. I told my mum to wait outside our room. I didn’t have the strength or emotional resources to comfort her as well as my husband, son and stepdaughter. She is more dramatic than I am. She says I’m cold, I say she’s too emotional. Whatever the difference between us, I needed some space to be with my family. She argued and was not happy at all about it, but the nurses muscled her out. We filed into Za’s room. Andrew and I sat on her bed, Kala in a chair, Lachie stood. Zali read a book. It was upside down, but she was enjoying it anyway.

  ‘It’s definitely not leukaemia,’ Professor Kellie said from his seated position directly in front of me.

  I felt a zing in my stomach I mistook for excitement. I started smiling. Andrew held my hand.

  ‘Oh, thank goodness,’ I said as I breathed out. ‘I was so worried. I don’t know how these other parents do it. What a relief.’

  ‘Well,’ he paused, ‘it’s actually much more serious than that.’ He wasn’t smiling. He was resisting my efforts to defuse the situation. He was looking me straight in the eye. I checked his face, his body language, the way his shoulders dropped down and he leant in gently, bringing us into his confidence. I felt myself leaning forward in response, but in reality I was freefalling. The room was perfectly silent.

  ‘Zali is very unwell. She has a cancer called Langerhan’s cell histiocytosis or LCH. Zali has multisystem LCH in the bone marrow and major organs with haemophagocytosis. Histiocytes are a type of white blood cell. They travel around the body and clean up mess left over from the destruction of viruses and bacteria. In Zali’s case they’re overproducing. They’re consuming all the blood she’s producing [this is the haemophagocytosis] and they’re in her bone marrow, liver, spleen, bowel, ears and skin, and are attacking the healthy cells in those organs. This is causing the fevers she’s having, which produces more histiocytes. We don’t know what causes it. It’s very rare but one other girl in the hospital has it too. It’s extremely hard to treat and resistant to chemotherapy. Long-term survival from this condition is very low in the under-twos, even after treatment. For those with multisystem LCH it’s even less.’

  I could feel my heart pounding. I heard every word he said loud and clear. Each one had been a stab through my chest. Before my fear clutched my throat I asked the only question we really wanted the answer to.

  ‘Is she going to die?’ I whispered.

  Professor Kellie replied that most commonly this disease is seen in the skin and it resolves itself. Sometimes it’s found in one major organ and is treated with chemotherapy. When it was caught early and it responded to chemotherapy, the survival rate was about 20 per cent if it wasn’t in the bone marrow. Zali had shown symptoms since she was about six weeks old. She was now eighteen months old so she’d had LCH for a long time. It was in several organs including the bone marrow, so was considered to be multisystem LCH, which children under two rarely recovered from. He told us to prepare for the possibility that she may die during the next six weeks of chemotherapy. This six-week protocol was the only course of action available. If she didn’t respond to this treatment, there was no further treatment option. Even if the treatment did work temporarily, the long-term survival rate was poor – five years after successful treatment.

  He finished by saying that Zali was very unwell and that it would be wise to think about a funeral. We would see during these next six weeks what direction this would take. I commented that those last few words were the same words that Dr De Courcy had used. He said Dr De Courcy had trained under him for several years. Again, for the millionth time, I cursed myself for not paying more attention to Dr De Courcy the first time he had told us this was serious.

  The feeling is called heartbreak for a reason. It was like someone had crudely torn my heart in two and let the pain tear across my chest and make it ache. The groan of despair was so big and deep inside me I couldn’t open my mouth to let it out. I sat on the bed silently with Za and let the tears fall down my face while she read. My mum came in as Professor Kellie left and I told her what he had said. We all just sat and watched Zali for a while, completely devastated. My body ached from sadness and there was nowhere for it to go. It rolled around and around inside me. Nobody could say a word.

  After the doctor left and Za had gone back to sleep we all walked in the dark to RMH, leaving her in the care of the nurses for half an hour. Nobody talked. We didn’t have the words.

  I needed privacy and space. I couldn’t think. I couldn’t breathe. I was so scared.

  Kala helped me get some canned soup ready for dinner. We all sat together in the communal dining area while other residents watched TV or talked. Kala texted on Andrew’s phone and stared fiercely into her soup. She cried quietly but not for long. Lachie, thankfully, was just subdued. He was always okay if I was okay. I could see by looking at Andrew that he was angry, sad and hopeful. He cried quietly on and off.

  Sadness filled me from my leaden feet to my pounding ears. I wanted to throw up. I had no words or strength to comfort the children or Andrew. Lachie was watching me intently, needing some sign I would be fine and would be there for him.

  Mum broke the ice by saying, ‘Well, are we going to talk about it?’ and stared at everyone at the table.

  Opening my mouth, I wasn’t sure what would come out, the groan from my heartache, words or vomit. I whispered, ‘No, Mum. Just give us a break.’

  Mum threw her head into her hands and started sobbing. I took my soup to a table outside and my family followed as volunteers at the house raced over to Mum to comfort her. The rest of us finished our soup and went to bed numb. Andrew went back to the hospital to help Za through her next fever and I slept my first night in RMH.

  On the next day, Saturday, Carissa came to visit and brought her children and husband. It was terrific to see her, and they were the first visitors Za and I had received outside of our family during this week in hospital. Carissa was very emotional, as she and her whole family cared deeply about Za. She couldn’t believe that the general ill health she had been worried about in Zali had been the result of something so enormous as LCH.

  Carissa brought cards the little guys in her care had made for Za, and a card from the mother of one of Zali’s friends. Her own children were confused about why they couldn’t play with Zali or take her for a walk as they loved to do. It was only a short visit but I was reminded again how lucky we had been to have such wonderful care around Zali.

  Chapter 12

  Saturday 9 May 2009, 7 days in hospital

  First day of chemotherapy

  Za began chemotherapy on Saturday. She was still in the Variety Ward as she still had RSV, but that morning she was moved into a new room in the ward with a small balcony because they needed the large room for someone else. We were very lucky to have a room to ourselves and the caged-in balcony to escape to. Mum returned to Queensland mid-morning. On Saturday afternoon, Virginia, a chemo nurse who worked with Professor Kellie, came as I sat alone playing with Za.
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  I was terrified of chemo going into her little body. I scrambled in my head for alternatives – a way to put it off, an alternative treatment, spontaneous remission. That happens sometimes. Although my panic was screaming loud and clear, deep inside I knew chemo was the only path to take.

  To administer the chemo, Virginia wore a purple full-length disposable gown that covered her arms and went to her ankles. She wore gloves that covered her hands and wrists, and safety goggles too. She brought with her a rubbish container. The container was bright yellow, with a black radiation symbol on it and a thick, heavy lid.

  The material about to enter my daughter’s jugular and course through her bones over the next few hours was so toxic that her nappies had to be put into this type of container along with any rubbish from the procedure. She became radioactive when this went into her. It was highly toxic to healthy adults, but here we were, putting it into a sick child.

  I was worried about what was coming. I was worried I wouldn’t be able to handle her being sicker than she already was. I was scared of the possible side effects: mucositis (inflammation of the lining of the digestive tract), nausea, a metallic taste, dizziness, continued low blood counts, diarrhoea, headaches, aching bones, see-through skin, hair loss, poor sleep.

  I was scared about what would happen after chemo stopped in six weeks. What would happen if it didn’t work? Surely that couldn’t be the end. I knew Professor Kellie had said it would be, but surely not. That didn’t seem right. There is always something else. There must be another chance or way of fixing it.

  It was sickening to watch the fluid go in, even though there was no difference in appearance from an IV containing ordinary fluids, and there was no immediate effect on Zali. Zali lay in bed and I read her stories while it pumped through her. We played with stickers, had lunch and she had a sleep afterwards.

  In the afternoon, the winter sun shone weakly through the windows of the room. I lay a blanket on the floor of the balcony and took her books and pencils outside so she could play. As I sat on a hard plastic chair next to Andrew who had arrived, I could see two black-and-white butterflies chasing each other across the lantana. Zali was so curious about them and loved watching them. She was delighted as they landed on the thick frame around the cage almost within arm’s reach. I was astounded to see something so beautiful and light and carefree outside our cage when my own heart was so full of dread. Over the next six weeks of chemo those butterflies came to our cage constantly, floating lightly without a care in the world then resting on the metal of the window frames before floating away again. It was surreal. How could the normal world exist immediately outside while we went through this?

  We received another visitor that Saturday. It was a nurse from a different section of the hospital who had some test results she wanted to discuss with us. The central venous line, from which they took a sample after Za’s septic shock episode, had tested positive for an enzyme called extended-spectrum beta-lactamase (ESBL). ESBL indicates the presence of a hospital superbug that is resistant to antibiotics. It comes from hospitals and normally lives on the skin without causing a problem, but when the skin is cut, as Za’s had been for the line, and when a patient is immuno-compromised as Za was, it begins to colonise elsewhere. Za had it in the line, but it was also showing up in her bladder and bowels. They were testing it to see if her version of it would be sensitive to any type of antibiotics, but at this point it was resistant to all of them. She would have to stay isolated from other immuno-compromised children, especially as she still wore nappies. We would always be in a room on our own, and would only have to share a room if another patient also had ESBL. We would be in the Variety Ward from now on for our treatment, as there was too much risk to other patients if we returned to Camperdown Ward. Brilliant, just friggin’ brilliant.

  As suggested by Professor Kellie, I began the preparations for the funeral that first week of chemo. We had no savings and I knew in general that funerals could be expensive, but I was unsure how much they would cost. Mum suggested that I contact our bank and let them know what was happening and ask them if they could help us. It didn’t sound like a very bank-like thing to do but I gave it a go. We had a big mortgage, and surely it was in the bank’s interest to keep us paying it.

  I called our local branch in Terrigal and spoke with the manager. It must have been a deeply unsettling experience for her. I explained calmly and simply that my daughter had cancer and that it was likely that in the next six weeks we would have to organise a funeral for her. I had no leave left so no pay, and Andrew was off work with PTSD. I needed to put our mortgage on hold so I could save for the funeral and would the bank be able to help us? She put me through to a head office type who sent me the form to fill in immediately. Professor Kellie gave me a letter for the bank that outlined the situation, and by the end of the week our mortgage was put on hold until we could afford it again. We still had interest building and the payments would have to be made up again, but for now we could use that money to save for the funeral.

  I couldn’t bear to call around funeral homes to find out what to do, and neither Andrew nor I had much of an idea about what we wanted. We also didn’t know where to put Za to rest. I emailed a crematorium near our house. In the email I explained our situation, and that I didn’t know what expenses to expect, or even what happened at a funeral or what I should organise now before I was too grief-stricken to plan anything else.

  The lady who replied was compassionate and specific, which was exactly what I needed. She wrote a list of what the costs were and what people liked to plan for children’s funerals. She told me that photos and music were usually important to the family. Most importantly, she told me that because of their own experience, they never made a profit on children’s funerals. They gave me a final price they would stick to. I googled around and found that this price was fair so I decided to go with them.

  Asking a person to speak at the funeral was another big deal I had to consider. I needed someone who would actually be able to say what needed to be said without breaking down, someone who cared about us and Zali. I asked my mum if Gavin, her husband, could read out a speech I would write for the funeral, as I thought anyone else in our immediate family would probably be too distraught. I also planned on asking Carissa, as she had been such an insightful and loving carer to Zali. I asked Kala if she could collect photos of Za and organise them into a montage. She was keen, and had a plan to make a beautiful montage that would make people smile about the life Zali had led so far. Finally I had to pick the flowers and music. I decided on white gardenias for the flowers, because they grew in our garden.

  The music decision haunted me and still haunts me to this day. I picked Coldplay’s ‘Fix You’ to explain the fight we were going through. As a conversation between Za and me I picked ‘Time After Time’ sung by Eva Cassidy. I still don’t know what song I would have used to honour Zali herself. Cheery nursery rhymes would be out of place, ‘Arms of an Angel’ is used by everyone. Something acoustic and sung by a woman, but that’s as far as I got.

  When I explained all of this to Andrew he said he would leave the details to me, but said he didn’t want her buried. He wanted her cremated so she could always be with us. The funeral home said they would help find an appropriate urn for her.

  At the end of the first full week of chemo I had my first proper night’s stay in RMH. Previously I had arrived there too late at night to meet people and see what went on. I was tired and stressed from managing Zali’s vomit and fever and diarrhoea all week. I’d stopped throwing up myself, finally. The nurses were helping me with all the standard medications that go with chemo to control nausea, such as ondansetron, and the pain relief doctor, Amanda, had started working on some opiate solutions for Zali’s pain management. We were experimenting at the moment with morphine doses, slowly increasing the amounts.

  Zali was grouchy and difficult to manage because her pain wasn’t under control, which magnified everything. The beds were
being changed at least four times a day because of body fluids and this was a difficult manoeuvre. She hadn’t slept well all week and so neither had I.

  Andrew and Kala came to see me after dinner at about 7.30 pm on Friday 22 May. We had marked off on the calendar almost two weeks of Zali’s chemo. They were excited about a party that was on at RMH. The Qantas pilots had brought masses of salads, pasta bakes, desserts and meat and put on a barbecue. There was alcohol, and the pilots had formed a band and were playing some sizzling tunes to go with the food. I was pushed out of the door quickly at the hospital and sent to the house to join the party.

  I really didn’t feel like going to a party, but I was extremely hungry because I hadn’t eaten all day. My whole day had been taken up by illness, nurses, Zali and medication. I was filthy in my grey oversized tracksuit pants and in a filthy mood.

  I felt under pressure to meet Adrienne the manager of the house, who everyone had said was close to a saint. All I really wanted was some dinner, a shower and some sleep, and if all this could be done without interruptions or demands on me that would be ideal. I had spent all my time lately meeting Zali’s needs and talking to medical people. I could really do with some peace.

  As I entered the house I could see the leftover food and hear the band pumping. The mood in the house was excited and relaxed. Mum, who had returned that day, greeted me with a plate of leftovers and led me outside to a picnic table where the party and band were set up. The kids played freely and I could see Lachie had made a friend and they were running around and laughing together. Kala showed me an MP3 player that had been given to her. The Qantas lost-and-found people had donated their lost property to the house, including many of these music devices. Mum introduced me to Adrienne, who was warm and friendly. She told me she used to be a nurse and so understood the medical pressure we were going through.

  I sat at the table and ate my dinner as Mum and Kala talked excitedly about aspects of the house and the band played soft rock as adults and children danced. I couldn’t see Lachie very well as he came and went in the dark of the large garden and this made me uneasy. The game he was involved in with his friends was getting louder and more boisterous. I snapped at him to sit with me at the table for a bit and calm down. His part in the game was over. He was annoyed and sulky as he flopped down next to me.