Chapter 20
Wednesday 17 June 2009, 46 days in hospital
Sixth week of chemotherapy
All through Zali’s chemo I was a little jealous of the stories I heard of extreme hunger in patients on steroids. Za had now been on chemotherapy and steroids for six weeks. We had been warned that she would experience roid rage and hunger but she hadn’t at all.
Finally, in the middle of June, Za started to get hungry. I was hopeful. Maybe this was a sign that we had the disease on the ropes and chemo was winning. As we sat on the bed reading a book about food she pointed to the picture of a strawberry and repeated what it was.
‘Strawberry for Za Za?’ she asked.
Andrew and I looked at each other shocked.
‘Do you want a strawberry, Za?’ I asked, excited.
Za nodded her head and repeated over and over in a football cheer, ‘Strawberry, strawberry, strawberry,’ her little fists pumping into the air.
Andrew took over reading the books to her and I raced out the door to the big RMH. It was winter and strawberries were out of season, but perhaps there were some at the house in the communal fruit and vegie area. My heart pounded as I ran into the kitchen and checked the pantry. All my hopes of a cure lay in Za’s desire for a strawberry. I rummaged through the boxes of food looking desperately for the fruit but there was none. I looked in both of the large fridges. Perhaps there were some there. Nothing. I began to rummage through people’s private storage of food. Perhaps another family had some. I could take them and let them know later and replace them. I checked every storage basket there and looked in every plastic bag. Nothing. After forty minutes of ransacking every container and box in the kitchen I had nothing.
I leant on the kitchen table unable to believe my bad luck. I had to get back. Za would be upset and that would be difficult for Andrew. I couldn’t even think of where I could get strawberries out of season. All this time in the hospital and this was the first time Za had wanted food, the one single time she had asked, and I couldn’t help.
I wanted to scream. I breathed deeply, trying to pull myself together before going back to the hospital. I wasn’t going to cry. I willed myself to hold it together. As I raged inside at the unjustness of strawberries being out of season another mother walked through the glass safety door into the kitchen.
I knew this woman was the mother of a young boy close to Lachlan’s age, also called Lachlan. He had leukaemia and had spent a lot of time in and out of the hospital. Today was his birthday. Each birthday these sick kids have is significant. In her hands she carried a chocolate mud cake with one gleaming strawberry on top. It was soggy from the icing, but it was large, gleaming, and it was a strawberry.
As soon as she saw my face the mother stopped.
‘What’s wrong?’ she asked.
‘Zali’s hungry for the first time in six weeks. She wants strawberries and I’ve checked everywhere and I can’t find any. Maybe it means that LCH is going and the chemo is finally working and I really want to feed her something. She’s so skinny, she’s lost so much weight, and there isn’t any other treatment apart from this one. If she starts eating strawberries maybe she’ll put some weight on and as the strawberries are great antioxidants maybe she can fight this. She wants to eat but I can’t find anything to give her.’ I rambled on in a desperate, confused, blabbing heap, blinking hard to fight off the look that must be on my face. I’m sure I looked like a wolf staring at a lamb.
‘Oh, here,’ she said and she took the strawberry proudly displayed on the top of her son’s birthday cake and put it on a saucer for me.
‘Thanks. It’s not enough,’ I replied bluntly. My desperation was making me rude.
She apologised and agreed that of course it wasn’t enough. She went to the fridge and took out a big punnet of perfectly formed, large, juicy, red strawberries and gave them to me without thinking twice. During my in-depth ransacking they had been sitting on the middle shelf of the fridge the whole time. In my panic I had missed them. They were beautiful fat, red jewels. It was an incredible gesture of generosity.
I thanked her and ran out of the house like a thief, carrying with me my precious gems. As soon as I got back to Za and gave the strawberries to her she gulped them down, with absolutely no regard for how expensive they must have been out of season, or how hard I had looked to get them. As soon as they were finished she wanted more food, ham this time. Luckily it was lunchtime, so we were able to organise some ham for her. She ate two sandwiches loaded up to the hilt with it.
The next few days progressed this way, and I have never been happier to give a child food. Zali developed a common condition called pica, when someone craves a food they need. Pregnant women get it wrong and crave shoe polish. Zali craved protein most of the time, important for building muscle and immunity. When her magnesium levels were low she craved roasted salty cashews. She craved bananas for potassium. When her albumin levels were low she craved salty things, which helped retain fluids in her. Teriyaki-flavoured soba noodles with barbecue chicken was her favourite meal.
After three days of solid eating she began to lose interest. On the last day of chemotherapy I was sitting on her bed trying to get her to eat some dinner, her favourite noodles. It was 6.30 pm and I hadn’t been able to get her to eat anything all day. She’d had the last of the chemo and the last of the steroids. The rash had gone, and the LCH should be retreating. She should have been hungry, but she wasn’t.
Lach came into the room, noisily as always. He flopped onto her bed and pushed her limp legs to the side so he could fit on. She whinged but allowed him on the bed. He complained that I hadn’t come back to the unit yet and it was dinnertime and he was hungry. He wanted me to hurry up. I explained to him that I was trying to feed Za some dinner first before I came back to the house.
‘Here, give it to me,’ he said and snatched the fork and bowl out of my hand. He put a scoop of noodles on the fork and held it towards Zali’s mouth.
‘Here, Zali, have some noodles. It’s your favourite,’ he said firmly, putting it up to her mouth.
She turned her face away and said, ‘I no like it.’
Lachlan persisted and moved around to the other side of the bed where she was facing.
‘Here, Za, you’ve gotta have the noodles so Mum can come home. Hurry up,’ he pushed the noodles to her mouth. She pushed the fork away and turned her head the opposite way.
‘I no like it,’ she said strongly.
Lachlan would not be deterred and came back to my side of the bed. He put a fresh forkful of noodles on the fork.
‘C’mon Za,’ he said, and pushed the fork forwards. The noodles dangled precariously off the end of the fork, waving wildly in a warning signal not to go any further. He tried to push the noodles into her mouth.
Zali snapped her head around and slapped Lachlan hard on the cheek. She leant forward and put her forehead onto his forehead, her blue eyes drilling into his blue eyes.
‘I. No. Like it,’ she said clearly and straight to him.
Lachlan backed off.
‘Okay, Za, okay,’ he conceded, rubbing his cheek. We all laughed. Lach had got what was coming to him. Even the noodles knew that.
I took Lach home and made him some dinner, then returned to the hospital and relieved Andrew of his post.
Chapter 21
Wednesday 17 June 2009, 46 days in hospital
Last dose of chemotherapy
That night the fevers began again. In the morning I could see the purple rash had returned to Zali’s groin area. I asked the nurse to get the Variety Ward doctor. He came and told me it was nothing to worry about. I told him to get the dermatologist and let Professor Kellie know the rash had returned. He said there was no need to panic as this was common in cancer patients.
I told him this wasn’t a question. Go get the dermatologist.
I called Professor Kellie myself and left a message with his secretary then waited for the dermatologist to return. He came af
ter lunch. He looked at the rash in the groin casually. In one simple sentence he said what I already knew.
‘Yes, those are Langerhan’s cells.’
The disease was not beaten and we had run out of options. Cold fear filled me from my head to my toes. I babbled to myself in my head, arguing with myself to hang on: ‘It’s not over. Professor Kellie hasn’t said it’s over so it’s not over. He makes the decisions on her treatment. He’s the expert. He knows exactly what’s happening to her. I’ll wait until he gives his diagnosis. Nobody else’s opinion matters. I’ll wait until he comes before I fall apart. Everything can be fixed. There’s no such thing as no more cure. She’s sitting here alive and playing and singing, she’s not dying. This isn’t the end. Professor Kellie hasn’t said so. This can’t be the finish. It doesn’t finish like this.’
Andrew and I waited. We were tense. We were trying not to think about what the rash meant. Zali was happy while she played and slept. Lach was at school and so was Kala. Neither of them knew what had happened. Hour after hour passed and we were almost bipolar in our hope that it wasn’t over and our despair that it might be. We were hanging by a thread by the time Professor Kellie came, late in the afternoon, possibly just before his knock-off time.
As he entered our room he told us he was very sad to hear that Zali’s rash had come back. He said she had indeed gone through the only treatment available and if the rash had returned then the disease was still active in her major organs. He reminded me that he had warned us that this disease was very resistant to treatment. The survival rates were very low, especially in children under the age of two with multiple major organ involvement.
I just had enough time to gasp, before he pushed on. He told us he had been researching alternatives these past six weeks in case this treatment didn’t work. He had been to the United States and spoken with experts there. There was a treatment we could use. It hadn’t been used in Australia before, and certainly not in a child who was so sick, but in America they’d had some success with it on a very small sample group. He had started using it this week on the other child in the hospital who had LCH.
The treatment was very intense. It would involve Zali having two types of chemotherapy each day for five days. One type would be given in the morning, another in the afternoon.
It was very strong treatment for an adult and would make an adult feel sick, so the effect on an already sick child would be big. There was no guarantee that this would work, but it was the only other option he could think of.
We agreed to go ahead and the deal was done. I was both exceptionally grateful and terrified. I couldn’t believe that without this long shot we had nothing. That night, Zali started the first of ten doses.
Chapter 22
Thursday 18 June 2009, 47 days in hospital
Entry into PICU (Paediatric Intensive Care Unit)
The next morning was grim. It was the first time I could see what the end might look like. Nobody had dared tell me what would happen when Zali died, or exactly how it would come. I didn’t want to ask. I didn’t want to say it out loud in case it came true but I did fear all sorts of scenarios before that morning.
When I woke up at 6.30 am Zali was already awake, lying there as Belinda the nurse monitored her. She wasn’t making any noise. She wasn’t vomiting or fighting or talking or moving. She was just lying there watching Belinda, our nurse. She was a pale grey colour and she looked swollen all over. Her face had the moonlike appearance steroids give patients, but her body was swollen all over and looked squishy under that tight skin. It looked very uncomfortable. There was the usual drip of albumin going into her. Waking up to a child who is not fighting, who feels so wretched they can’t even vomit any more is more alarming than any emergency.
Belinda said she was concerned because the fluid that was going in wasn’t coming out. This could be caused by low albumin, poor kidney function or something unknown.
Albumin, a protein in blood plasma, helps keep water in the bloodstream. Without it the water leaks into the soft tissue, making the person both dehydrated and overhydrated. Both are extremely stressful for the kidneys. Albumin was one of the favourite blood products of the histiocytes that currently had free rein in Za’s body. As she regularly had infusions of it, I assumed that the problem was that her histiocytes had consumed a lot of it and the water was leaking into her soft tissue. She did get bloated from time to time as a result, but an infusion of albumin and/or a diuretic usually fixed it fairly quickly and it wasn’t a big problem I worried about.
That said, I had never seen Za this bloated all over her body. Even her limp muscle-less legs were beginning to fill out. How ironic that they should look almost normal now. I asked the nurse to give her a diuretic because that was the other treatment that helped. She pursed her lips and said, ‘I’m not happy about this. It’s not right. I’m going to get a doctor.’
Throughout the day the doctors checked on Zali regularly. Belinda went from having four patients to just having Zali. Za was getting more bloated, her blood pressure was getting lower and her respiration was getting faster. She was panting from a high heart rate and the water in her body was making her lungs soggy.
She got another dose of chemotherapy during the day. I protested as the dreaded nurse came in dressed in purple protective wear. I asked her if she had spoken to the other nurse, if Professor Kellie knew what had happened, if she understood what was happening to Zali, that something unknown was going wrong.
She answered yes to every question.
I explained to her what I knew in case she hadn’t heard everybody else properly. She simply nodded quietly. She hooked the chemo up anyway and it went into Zali’s body. Radioactive, bone-killing, dangerous-to-everybody-else chemotherapy went into my little girl’s jugular. It was about 8 pm, some two hours after Belinda’s finish time. She had a son and a partner to get home to but she was staying with us instead. She was anxious about Zali and something about the situation really bothered her. She entered the room completely distracted, and I could see on her face she was very worried.
Quietly, she told us she wanted to contact the Paediatric Intensive Care Unit (PICU) to come over and have a look at Za to make an assessment. She explained that something was really wrong, and she wasn’t sure what it was but it was getting worse. She asked us what we thought about that.
Andrew and I told her we trusted her opinion. I told her I was really worried. More than normal. I started crying. I told her something was really wrong, but I didn’t want PICU to come and check. I felt like she was telling on us. I was afraid they would put a light on this big problem and tell us this was the end. I could see what the end might look like now. I didn’t want anyone to say it out loud, because it would be too hard to fight then.
By now Za had three litres too much fluid in her. One litre of it was from this one day. It caused her eyes to bulge and her arms and legs to inflate outwards from her body. She was unable to move. Never if I live to be 100 years old will I forget the look of panic in her eyes and my horror-stricken desperation.
Brad, a nurse from PICU, came at about 10 pm and observed Zali. He left and returned forty-five minutes later. Nothing had improved in this time and he told us he thought Zali needed more support than Variety Ward could provide. He thought her kidneys were under stress and weren’t performing well, and he could see she was suffering from respiratory distress. PICU could assist her with ventilation, which was the most important issue at the moment. He was transferring her to his unit.
We packed up some basics for her, and the nurses agreed we could come back for her extensive collection of books and toys the next day. Even though she didn’t need anything in PICU, I felt so unprepared. I packed my clothes and her clothes although she was naked apart from a nappy because of the fevers. In reality, I was probably trying to put off our departure, but as much as I stalled, Brad pushed for quick action. I knew Za needed urgent help, but I was dreading what that would be, and what that meant for the di
sease progression. I didn’t want to know.
As we left Variety Ward and walked down the corridor to the PICU I felt like we were walking the green mile. I felt like a prisoner going to her death.
Nothing we had done, nothing the doctors had done, had worked. All this suffering was for nothing. The amount of pain we had all felt made no difference at all to the outcome. We had done what was asked of us. We had waited. We had suffered. We had felt her pain. We had cried. It hadn’t made one bit of difference. The disease was going to do whatever the hell it wanted. The treatment had failed. Zali’s body was failing. I had failed.
There weren’t many people around the hospital at that time of night, but the ones who were wandering the halls smiled sympathetically at us as we walked passed them. There were no further stops after PICU. It’s the last port of call for critical emergencies.
Brad kindly explained to us that this wasn’t the end for Zali, and that you just didn’t know what could happen next. It was quite common for chemotherapy patients to do the rounds of Camperdown (oncology), Variety (contagious diseases), PICU (for respiration support) and then back to Camperdown. Chemotherapy is very hard on the body, and kids who already had colds often ended up with respiratory problems and needed assistance. The normal stay in PICU was twenty-four hours to a few days.
I felt a bit better when he explained this. It was another one of those commonly followed paths that people here had gone down but didn’t talk about. If others had managed it and returned quickly to the Camperdown Ward then we could too.
By the time we finally entered our PICU room it was about midnight and we were into the new day, Friday 19 June. The room was large and spacious, and was positioned next to the nurses’ station. On the furthest side there was an enormous window that went nearly from the floor to the ceiling. On one side there was a rendered blue concrete wall, and on the opposite side a glass wall that revealed the room next to us. The fourth wall was a giant glass sliding door, which slid away as we entered the room. The room was like a fishbowl on three sides.
Saving Zali Page 11