To resolve this issue I was aware of in myself, I would put my body on automatic while my mind worked furiously through these arguments. By the time I pulled myself back together I had finished whatever the challenge was.
I don’t think I’m tough. Toughness has an element of brashness about it that I don’t have. Steely perhaps. Sometimes I am a fighter, there’s no doubt about that. All the time, though, I am strong.
I tell myself that being here in the hospital is a very difficult challenge. I don’t know how far away the finish line is, but if I am freaking out this badly, then maybe it’s close. Maybe I am 75 per cent of the way through. I don’t know if the cure will be found tomorrow or the day after. I don’t know if she will die tomorrow or the day after either. Whatever the finish looks like, I can’t give up. We might be closer than we think. I am stronger than I think.
I realised in that argument with myself that there is no limit to how low you can go. There is no cosmic boundary. Unless you stop yourself you could fall forever. I fell further than I ever thought possible.
I tell myself to stop. Just stop this. It’s sucking Lachlan and Andrew down with me. They are holding onto me and are both terrified they will lose me as well as Za. This is too much for everyone. Every day the same fear for all of us. It’s scaring Andrew and it’s scaring Lach and it’s time to stop. I can’t be that selfish. It’s not right.
I prayed for mercy to the Great Unknown.
Mercy for Zali. Ease her pain. If death should come, don’t let her see it. I don’t want her to be scared.
Mercy for Lachlan. Take away his panic and give him joy and freedom again.
Mercy for Andrew. Remove his guilt that he’s not doing this right.
Mercy for Kala. Allow her to be free of fear.
Mercy for me. Place a hand on my heart and soothe the ache.
Lord have mercy.
I prayed for strength for my family to continue to battle through to the end. I didn’t request it for myself. I am self-made. I know that I am strong. I know that I am brave and I know I have courage. I don’t need to find it but I do need help to use it.
I acknowledged these truths to myself.
I was so tired. I needed help to open my eyes each morning. I decided I would use the support gathered around me to make my ladder out of this despair. I would pull myself through with the help of the nurses who loved Zali. I would use the family who anxiously visited. I would borrow the courage of friends who visited me despite being scared it would be awful to see us in such a state.
I couldn’t fall away from Andrew. It’s hard to find a good man. I couldn’t let Lachlan down. I can’t be the rock he has based his world on then turn to dust and disappear in grief. I couldn’t let go. I couldn’t let go of Zali and I wouldn’t let go of Lach and I was there for Andrew.
Zali was depressed too. It was hard to make her smile. I was going to pull us all through this.
I could do this. I am strong. I would not let go.
Breathe.
Breathe in, breathe out.
Tongue pressed hard to the roof of the mouth to avoid tears. Eyes wide to stop tears, slow blinks to slow their rate of falling.
Breathe. In. Out.
Wake up, leave house. One foot then the other. One foot then the other. One foot then the other.
Get news at hospital. Wait. Deep breath in, long breath out.
Lach went to school, Lach came home. Kala caught the train, Kala came home. Andrew put the washing out, washing came back in. Sun went up, sun went down. Bonjour, bonsoir.
Breathe. One foot then the other.
The shadows got shorter. Winter was moving into spring.
My mind was filled with breathing and the ticking clock.
Chapter 41
Friday 11 September 2009, 132 days in hospital
85 days in PICU
I had a late start on the morning of 11 September 2009. The sun was out when I wandered over slowly to the hospital from our unit, enjoying every bit of the short walk. It was the end of winter but the sunlight was still pretty. It shone off the dew on the ground and on the leaves of the trees. I got a coffee before I came to the ward so arrived at about 7.30 am. Andrew was going to North Sydney for something to do with work, some further hoop he had to jump through to get out of the cops. Lachie would come and join me soon for some breakfast before he went to school.
I allowed myself this later start that day because I was filled with the first glimmer of hope and it had made me cocky. Though she had not had any tests to prove the cancer was gone, the fact that she was still alive was really positive to me. I was just waiting for her blood amounts to come up then I would feel that she had recovered from chemotherapy and could be cancer-free. Za had been out of a coma for a long while, off dialysis for even more and they had moved her from the room immediately next to the nurses’ station to one further down the hall but still in PICU. I took this as a very good sign. Of course there were still problems to work on: her blood counts since chemo were still really low and didn’t appear to be improving at all, her heart rate was high, and had been for a while now, causing all sorts of problems including weight loss. Generally it rested at 165 beats per minute but if she was crying it could get up to 175 beats per minute. To put it in layman’s terms, if a very unfit person was forced to sprint 100 metres non-stop, that’s what their heart rate would be. Za’s was like that all the time.
The liquid food replacement called TPN was being enriched to cover the deficit in calories due to the fact that she couldn’t eat anything, her stomach had stopped working and her high heart rate used a lot of calories. She was still intubated because her lungs still had fluid in them, but these doctors were so clever, I felt confident that with the amount of effort they were putting in they would surely come up with an answer soon.
When I had left the new room the day before I had noticed how much smaller it was. What was most encouraging was that there was less space for further life support machines. A dialysis machine, for example, wouldn’t fit in here. Once the dialysis machine had been taken away, Za only needed the ventilation machine, various drips and the fentanyl line so there was less need of room.
The room was painted apricot, which was sickly and cheap-looking. Like all the rooms in the hospital, it was rendered concrete so it was sort of cold and a bit clammy. I didn’t care. When you don’t pay for the accommodation you can’t complain about paint schemes. I felt grateful to need only a small room for Za.
That morning, after my late start, as I walked past the small kitchenette I could see the wall-sized glass door to Zali’s room was closed. I pulled the door away and as it slid across I looked up at the monitor screen. The screen showed Zali’s vital signs: heart rate, blood pressure, respiration, oxygen.
My stomach dropped and my mouth fell open.
Heart rate 200 beats per minute, respiration high, blood pressure low, oxygen low. Zali was not asleep, she was unconscious.
‘Oh my god. FUCK!’ I shouted looking to the small nurse who hadn’t yet been relieved from the night before and was sitting calmly on her chair at her computer.
‘Oh, don’t worry,’ she said cheerfully in her happy Chinese accent. ‘This is all right, we already know she have high heart rate. She 200 when sleeping, 220 when upset. The same all night.’
‘FUCK!’ I shouted again, leaning my hands on my knees for support, catching my breath.
‘When I left yesterday it was 175 and that was bad! She’s having a fucking heart attack!’ I yelled at the blinking, confused nurse.
Dr Elle was walking past as I was shouting. ‘Oh my God!’ she shouted and smacked the alarm button hard above Zali’s head. She immediately increased Za’s oxygen and took a blood sample.
‘How long has it been like this?’
‘All night,’ replied the nurse, less confidently this time.
Nurses and doctors came running from everywhere and I sank into the chair. I sobbed hard and fast and then stopped. I couldn’t
lose control here. No time for hysteria now.
Dr Elle started barking orders at the nurse and coordinating the efforts of everyone there. Someone had brought a large box on wheels with drugs and tools, and nurses were gathered around it preparing for the next procedure. Dr Elle finished drawing the blood sample and raced out of the room to the blood analysis machine nearby. As all this happened around me I called Andrew.
‘Babe, you’ve gotta come back. Zali’s having a heart attack or something. Her heart rate is 200 beats per minute. They’ve hit the emergency alarm,’ I told him.
‘Okay,’ he replied. ‘I’m in heavy traffic so it’s a bit hard, but I’m turning around now.’
Dr Elle returned. She told me she had measured something in Zali’s blood that gauges heart stress. The scale should be between one and five, maybe eight in Za’s case. This time it was twelve. You don’t survive twelve. She told me to call Andrew. I told her I already had and he was on his way.
Two types of adrenalin were hooked up to Za at double the usual strength. A blood thinner was hooked up, and various other drugs. Some of the nurses who had come in I had become friends with. None of them made eye contact with me now. I couldn’t see their faces to judge what was really happening. They were avoiding connecting with me. They were being purely professional, which was necessary but upsetting in its seriousness.
Dr Elle finished hooking up the adrenalin and told me to call Andrew again. When he answered the phone I told him Dr Elle had said to call again and find out where he was.
‘I’m fucking coming. I’m stuck in traffic, I’m about twenty minutes away. Just tell her to hold on,’ he shouted and then hung up.
Dr Elle asked what he said and I told her. She put her hand on my arm and looked into my eyes. She said forcefully and quickly. ‘Do you want me to call him. He really needs to be here. Right now.’
‘Dr Elle,’ I returned. ‘I’ve called him twice and he knows what’s happening and he’s trying to get here. I know what’s happening. I know she’s had a heart attack. I know she’s dying. I know. He knows. Please stop telling me. I already know. This is hard enough.’ I stared miserably at Zali in the bed waiting for the adrenalin to take effect, if it could.
A look of shocked embarrassment crossed Dr Elle’s face. I didn’t want to fight with her. She was lovely and sweet and kind and she was working to save Zali’s life. On the whole she was generally composed and calm, but I could see she was feeling desperation. She sat down on the chair next to mine.
‘Okay,’ she said. ‘We’ll just wait together until he gets here.’
Two nurses stayed as everyone else including the nightshift nurse left.
I didn’t know why Andrew arriving would make so much difference to Dr Elle. It wasn’t like either of us had any control over this and it wouldn’t make any difference if he were here or not.
I then realised that Dr Elle was scared that Zali was about to die. This meant she was about to receive the full emotional impact of what I was feeling. She cared about Za and me. There wasn’t much she couldn’t have a go at medically, but she had no control over emotions. She didn’t want to be my only choice of support but there was no other path. It was coming directly at both of us.
For the next five minutes I just stroked Zali’s arm while she lay there with her eyes closed, breathing quickly. I hoped that if she died, it would be without drama. She would just feel my hand on her arm and go to sleep feeling loved. After seven minutes, just when it looked like nothing was going to work, her heart rate began to drop and her blood pressure improved. It settled on 180 beats per minute. It was faster than most adults after a one-minute sprint but it was less than 200 and would have to do.
Almost immediately after the heart rate had dropped down, Lachie came into the room looking for breakfast and a hot chocolate, and Andrew followed not long after that.
I wiped my eyes and Dr Elle gave me a quick hug and left discreetly. I sent Lach from the room, forcing a smile. I told him I would catch up in two seconds and asked him to go down and order some brekkie for both of us from the cafeteria. He could have an egg and bacon roll if he wanted, his favourite.
He left and I gave Andrew a hug, telling him briefly what had happened and assuring him she was okay now. He stayed with Zali and I went to get some brekkie with Lach and walk him to school. He goofed around with his friends and laughed as we walked.
That afternoon after school I told Lachie what had happened. He was upset that something bad always happened when he wasn’t there and that things were always different when he returned. He was upset that nobody told him what was really happening. I know he felt like he could handle it, but he was a child, and these were events I didn’t want him to have to deal with. I wasn’t being much of a mother to him at the moment, but I could spare him heartache, especially if the danger came and went.
Andrew told Kala when she got home from school. She didn’t say much, but she spent the next few days at home. Her fear was that she would leave for school and Zali wouldn’t be alive when she returned, and so she stayed to watch for the next catastrophe.
That afternoon Za was moved back into the first room next to the nurses’ station. Back to the start.
I did feel defeated, but held onto the fact that Za was still alive and we still didn’t need as many machines as before. I held on tight to my tiniest sliver of hope, though I kept it to myself. It wasn’t over yet and that was the only thing that mattered.
Chapter 42
Monday 14 September 2009, 135 days in hospital
88 days in PICU
On Monday 14 September Professor Kellie came and saw us in PICU. It had been a while since we’d seen the professor and his bow ties. There hadn’t been much cause for him to visit and he’s not the type to drop in and say hi.
He stood just inside the door, ready for a quick exit at the end of the day. He asked us about Za’s blood counts, which he would have already known full well. I told him there hadn’t been much difference over the last week from the low measurements they always were. Seizing on the opportunity of a blood discussion he told us that the continued low counts indicated the treatment Zali had been given had not been effective. He said her blood counts continued to be low long after chemotherapy had finished. He had waited longer than what was usually expected in the hope that she was just making a slow recovery. The failure of her body to respond after chemotherapy and with the complications she was facing it was unlikely that she would recover from LCH or make it to Christmas or even her second birthday on 3 November. He estimated we probably had about six to eight weeks left with her. He hadn’t taken a bone marrow biopsy yet, but due to her lack of recovery from the chemotherapy he could only surmise that it had not worked and Za still had multi-organ LCH with some very serious complications. He would organise a biopsy the following day to confirm his suspicions.
We were gutted, of course, but we had been told so often that Zali was dying I took to not thinking about it too much. This was new information, though, because I hadn’t had a time frame before now. Za would spend the rest of her days in PICU because she simply couldn’t be moved anywhere else. I knew they would continue to do everything they could right up to the end.
In truth, it was hard to plan beyond the next hour most days. I often counted down time in five- , ten-and twenty-minute lots, just hoping she would get to the next chunk of time. Christmas seemed unimaginably far away.
It must have been very disappointing to Professor Kellie too. He was an expert in this field and had taken a cutting-edge angle to fix this rare problem but it had failed. Also, despite his intellectual ways, he cared about us, and didn’t want to see Zali die. Andrew ribbed him constantly about his bow ties, serious demeanour and trips overseas. Professor Kellie defended himself, saying that when dealing in this field it was important to have a respectable look and a respectful manner, and the trips overseas had been by and large for research into Zali’s illness. Andrew told him he reckoned he was just heading over
to Banff for a quick ski trip and billing it to the hospital but not to worry, he’d do the same thing in his position. I don’t think Professor Kellie had ever been ribbed so much by the parents of his patients. He liked Andrew and had placed a lot of hope in Zali’s treatment.
I felt Zali needed longer to recover. It was a really big ask of the body to start rebuilding while it was still recovering. I felt it wasn’t that the disease was still active, it was that she was too weak. Given time, the other problems might go away and her bones might start to produce blood again. I blanked out what Professor Kellie said. It was too hard to hear and I didn’t agree with it. Andrew followed my lead.
Even so, a countdown started in the back of my head.
I called Mum that night and told her Zali might not make it to Christmas. I asked her not to come down during these last few weeks with her. If Zali lost this fight and could no longer hold onto life, I wanted our time with her to be calm and quiet and special. I knew Mum would be very upset and I didn’t want more crying in front of Zali. I also didn’t want to support anyone else in their grief. I just wanted to keep plodding along this path until we reached a conclusion. More than anything, I wanted some privacy and peace.
Andrew and I didn’t tell his parents, Kath and Rob, immediately, and we didn’t tell our children. Kath and Rob wouldn’t be back to Sydney for a few weeks, and we would tell them before they came to hold them off. Lach was already having panic attacks often and was so afraid that if he lost Zali, I would be lost in grief and lost to him too. It would have been cruel to confirm that this was indeed headed our way.
Kala didn’t need the added responsibility of this heavy knowledge either. Why put a time limit on their relative peace and make their experience that much worse? Andrew and I battled on, trying not to count down the time, but unable to stop thinking about it.
Saving Zali Page 18