Za’s fevers were ongoing, and were just as tiring and hard to manage. They could make her throw up and have diarrhoea which was hard to clean up at night. If it was a fever it took fifty minutes from administering the medication before it dropped, so the trick was to get a nurse to attend to us and agree that we could have something quickly.
I would climb into bed with Za, putting a stack of pillows behind my lower back. She would rest across my lap, her head in the crook of one knee, her bottom on the bed and her legs raised on my other knee because of her sore tummy. I would pat her chest as I waited for her to doze off, then I would try to slide sideways out of the bed.
If the fever didn’t break I would stay in the bed, patting her until morning. It was exhausting. Treating it like a night shift in the police helped, and counting down the hours also helped.
If Andrew didn’t come in the morning I would be crushed. With no fresh clothes, snacks, cash, or phone charger, which I often left at the unit, I was completely isolated and felt horrible about myself. It wasn’t fair to blame Andrew for not being there. He simply didn’t have the emotional reserves to handle what was happening in hospital because PTSD took the first bite and the medication he took at night made him completely groggy, if indeed he could be woken at all.
He was giving 100 per cent of what he had. Lachie and Kala were giving 100 per cent and needed someone too. The price was that our lives were essentially separate. I understood why people didn’t want to be in the room with Za and me, but I felt abandoned.
Chapter 17
June 2009
During Zali’s chemotherapy
It was during those six weeks of chemotherapy that I first experienced Lita, then Faye, the angels of sleep.
I was no longer comfortable sleeping at the unit, and felt more relaxed when I slept next to Zali in hospital in the parents’ bed. When I wasn’t there, I feared things were going horribly wrong at the hospital, and I was on tenterhooks waiting for a phone call telling me to come back in. I worried that Andrew would be stressed and angry looking after Za in the hospital if I slept back at the unit. I would worry about what the situation would be like when I returned in the morning. It meant a lot to Lach for me to sleep near him, but I was so preoccupied when I was at the unit that I don’t know why he valued it so much.
The most exquisite nights’ sleep I had the whole time we were in hospital were on Tuesday and Wednesday nights. It was a secret I didn’t share with Andrew because I didn’t want him volunteering for those nights and taking away what sleep I was getting. The reasons for my peace on these nights were Faye and Lita.
The first time I had Lita was on Tuesday 11 May, the first week Za started chemotherapy. I think perhaps the nurses felt sorry for us and sent us this little brown-skinned angel. Lita was tiny. She was about 5 feet 4 inches (162 centimetres), small in build with straight black shoulder-length hair similar in style to Dora the Explorer. It never moved out of place no matter what she was doing. It was a very sensible haircut.
She didn’t make much conversation with me at changeover at 7 pm except for, ‘You go to sleep, I’ll take care of everything tonight.’ I was dubious but appreciated the sentiment. I explained Zali’s four-hourly fevers and the vomiting that had started to ease off. I said I would buzz her when the alarms went off but if she didn’t mind I wouldn’t talk much. I told her that sometimes I would just sleep sitting up in the bed with Zali because it was easier if she couldn’t get to us for a while and I understood that they were busy. During the night Za had various IVs of blood products, medication and antibiotics, so alarms would be going off all night. She said she understood because she had seen Zali’s records and knew what would be happening during the night.
I watched her leave in her silent black rubber-soled shoes and marvelled at how quietly she shut the door. Her whole demeanour was humble and hardworking. I was curious about what the night would bring. I settled Za down at about 7 pm and went to sleep myself by about 8 pm in the single parent bed that was beside hers.
At 6.30 am the next morning I woke up to the medically clean smell of the wipe used to hold the end of Zali’s central line as Lita was taking the usual daily bloods. I was immediately astounded and angry at myself for my lack of awareness during the night. Had I missed a fever during the night? Had I missed alarms going off? How could I have slept through such important things? Who had comforted Zali? Oh my God, this was terrible.
Lita saw how disoriented I was and calmed me down. She explained that during the night she came in before the alarms for the drips went off and stopped them from sounding. A fever had started to develop during the night when she had taken Zali’s temperature but she had pushed Panadol through Zali’s line before she had woken up. There had been two dirty nappies during the night but she had also changed those without waking either of us. Za hadn’t woken once for anything. It was, in short, a miracle. Both of us had received the gift of the best night’s sleep in months. This was the most incredible gift anyone had ever given me. Thank God for Lita, a little sleep angel.
I was on a bit of a high that day. Getting sleep had made me feel like I was on invincibility drugs. It was brilliant. Because I felt so good I volunteered to stay the Wednesday night as well. I wouldn’t have Lita again, but felt like I had restored some reserves and could keep going.
That night I had Faye. She was as tall as I am (I’m 173 cm), with dark brown skin, short stylish dark brown hair and glasses. I hadn’t had her before so I went through the same rundown I had given Lita. I pondered her super-quiet rubber-soled shoes as she left and felt a little bit of hope – they were the same shoes as Lita’s. The gods were shining down on me again that night because for the second night running I got sleep. I slept from 8.30 pm to 6 am and so did Zali. It was incredible. I could have cried with happiness when I woke up.
From then on I always tried to arrange to sleep at the hospital on those nights. They were the best nights’ sleep I had in my entire experience there. I knew Lita and Faye would take care of every single need Zali had during the night. I wasn’t afraid because I was right there next to Za should something go wrong. By taking care of her, they took care of me, and I had never felt safer or better rested.
The days dragged by. We had six weeks of chemo to get through and it felt like an eternity. I filled the days as much as I could, but there were long periods when Zali simply slept or rested in bed while the chemotherapy and disease fought for dominance.
We went outside onto the small balcony and enjoyed the sunshine, and I read her books, up to 104 a day. I know it was 104 because I was so bored and frustrated with the constant book-reading that one day I counted how many I had read.
She played with bubbles, her absolute favourite activity. It was like meditation for me eventually, because I’d take a deep breath to draw in, a long smooth breath out to make the bubbles, then dip the loop in detergent again and blow again. We’d do this for up to an hour. The bubbles were peaceful to watch. She liked to try and do it herself, but she spat raspberries more than she blew, and the detergent would always end up all over her bedsheets. She drew, covered the nurses’ nametags with stickers, covered the bed with stickers and laughed at everything.
She didn’t eat, though, and she lost the ability to walk. She had been in bed for so long she had muscle wastage. What muscles were left weren’t strong enough to move her legs or support the weight of her wasting body. I was alarmed about it, but the nurses weren’t at all. They said that if I tried to push her to walk now she would have really awful pins and needles that would make it painful to walk, and anyway, she still needed to spend time in bed. When I had a look around the hospital at lunchtime I could see loads of parents pushing their chemo kids in prams or carrying them. It was really common. I guessed that eventually, if she made it through, she would be able walk again.
During this time of chemotherapy I paid attention to the different versions of God that were on offer at the hospital out of bored curiosity. There were rab
bis, Greek Orthodox priests, Anglican priests, imams and Catholic priests. They wandered around the hospital visiting those who had nominated their religion. We are not signed up to a religion. I don’t like the idea of a person telling me the rules of how I talk to God. That being the case, though, I occasionally got visits from people of faith. I didn’t mind on the whole. I was interested to see what their beliefs were and curious as to whether anything they said to me would make me feel better. Nothing did, really, but it was nice to have the visitors. Once Za worked out they hadn’t brought toys or presents, she lost interest quickly.
One day, Andrew’s uncle Robert and two of his adult children, Kellie and Dean, came to visit with Kellie’s new baby. It was a long trip for them, more than two and a half hours. They told us they would stay all day if we needed them to. They brought presents for Zali: a teapot with toy cups and cakes, which she loved. They did a coffee run for us and sat around and chatted with us for a couple of hours. It was perfect company and total support as they doted on all of us.
At about lunchtime a nurse showed our neighbour Mark into our room. I was surprised to see him. He was a bit awkward as he bumbled and clattered into the room with his suitcase on wheels. We weren’t expecting him but were glad of the company. He ran his own church, a Christian-offshoot type that is popular on the coast. He said his church group had been praying for Zali each week hoping for a quick recovery. It was a nice gesture and I said thanks. He asked if he could say a prayer for Zali in person. This was definitely not something I would have sought out myself and I felt a bit uncomfortable, but he had made a big effort to come and it wouldn’t hurt the situation.
He put his hands on Zali and began to pray out loud. It was surprising and deeply moving. The words he said were exactly what we had all been thinking without meaning it to be a prayer. He asked God to show us a sign that Zali was going to get well soon, that her family needed a miracle quickly to end Zali’s suffering and the suffering of the rest of the family. The love our family had for each other was given up as testament to us being good people and, most importantly, he asked for peace for Zali and for us as her parents. There wasn’t a dry eye in the room when he finished. We thanked him for his kind words and he clumsily bumbled out of the room, off to a different location to offer pastoral care.
Everyone left to have a break and get some lunch while I stayed with Za and put her to sleep. As she dozed I lay my head on the bed, eyes closed, letting what had been said wash over me.
People from all ends of the God spectrum had been negotiating on our behalf. We had Buddhist neighbours back home who were praying, Catholic relatives, new-age relatives, Christian Scientists, Christian offshoots. Surely, if there was someone listening, we deserved to be cut a break.
I was so tired. Bone weary. The road was long and appeared never-ending. A small sign, anything to let us know that things would be okay, would have meant so much to me. I watched over the last two weeks of June but there was no sign either way. Zali’s body continued to be a percolating brew of disease, drugs and medication. The only sign we had was that she hadn’t died yet, despite the predictions.
Chapter 18
Tuesday 16 June 2009, 45 days in hospital
Sixth week of chemotherapy
Lachie would often come into the room when we were in the Variety Ward and ask me to go places with him. He wanted me to go for a walk along the nearby river, come to RMH for biscuits, go to Starbucks for a hot choccy. I would tell him to wait so I could get Za in the pram and her IV hooked up to a pole, but he would say, ‘No let’s just go, just us.’ Sometimes I could, but most of the time I couldn’t.
It made the world of difference to me when Andrew brought Lach over in the mornings. I could go with him to Starbucks, then he would wander downstairs to the cafeteria and get a ham and cheese croissant and I would walk him the twenty-minute trip to school. On these days he was content and blissful, I was calm because Andrew was with Za, and Lachie and I could pretend we were having brekkie at a cafe in Newtown before school like we sometimes did when he was little.
On Tuesday 16 June he bounced in with Andrew but I couldn’t walk him to school. Za was having a full-body X-ray to search for further lesions on her bones related to the ones on her scalp. It meant she was going to have to be wrapped up completely in a blanket with only her head showing and slid on her back into a narrow tubelike machine that took the X-rays. The process was scary for her and physically difficult for us because we had to pin her down and restrain her while it happened and she screamed and twisted around. The potential results were what were most scary to us.
I told Lach that I needed to drive him to school and I would pick him up at the end of the day. Lach refused to go. He said he would just wait with us. I told him I needed him to be at school that day because I couldn’t look after him, there was too much going on. He flatly refused again.
Eventually I got him into the car and to the schoolyard. I forced him out of the car, now an hour late for school and an hour away from the scans. I started to edge him towards the playground and he became hysterical. He was crying, begging me to let him stay with us. He crouched down to make it difficult to move him. I stopped pushing him. I needed a moment to understand what was happening and come up with an answer that would serve all of us. Andrew was waiting in the car and was angry and frustrated that Lachlan was putting on a stink. I needed to sort this quickly and get back to the hospital.
I crouched down to look into Lach’s face. He was pale white, his eyes were very wide and he was disoriented. I started talking to him slowly, but he couldn’t reply, then he began throwing up. He was experiencing an anxiety attack. All of this happened in front of the office of the principal, who came out as Lachlan threw up and told me he couldn’t let Lach come to school in the condition he was in.
I took Lach back to the hospital with us. I couldn’t leave him alone at the unit or the big house, and I couldn’t take him with us to the scan. It would be horrifying for him to watch and he would probably try to stop us from pinning down Za. It would take two people to hold Zali down for this scan so we both had to be there. I decided to let him play computer games in the Starlight Room for as many hours as it took. It was a far from ideal choice, but at least he was under some sort of general supervision. He was simply desperate to avoid seeing, hearing or thinking about illness, and that morning he had been filled with dread when I said I couldn’t do the thing with him he had been expecting. He couldn’t face anything more happening to Za. At least in the Starlight Room he could lose himself in the racing car games.
Later he described the attack. He said he couldn’t hear my words, but my voice sounded like I was screaming at him. All the colours around him blended into giant bright swirls and he couldn’t see. It felt to him like he was about to die and this made him so scared he threw up. He was terrified of death and dying. If Zali, the adored baby, could die, it meant that something could happen to him too and he might die.
Nobody ever considers the possibility of a child dying. It is sacrosanct, a child’s life. It should be untouchable. Taking away that security made Lachlan’s whole world feel unstable. He understood exactly what was happening.
He had two more days like that, but when the attacks started happening, I backed off completely and he avoided vomiting. Cecelia talked with him about what he was feeling, but she only had general counselling training and his panic attacks related to some specific fears that really needed psychological intervention that I didn’t have time to organise for him then. He dealt with the anxiety by playing the Super Mario Brothers video game, and doing origami and ice sculpting in the Starlight Room. The only way he could function at all was to completely avoid his fear of death.
Chapter 19
Tuesday 16 June 2009, 45 days in hospital
Sixth week of chemotherapy
One night in Variety Ward in the last week of Za’s chemo, I woke up to the lights being turned on in the hallway. They were bright, immediate and st
ark. I could hear the sound of a mother and father talking with nurses as a bed was wheeled in next door. Over the next few hours there was a lot of activity. People were having urgent, hushed conversations in the hallways. The nurses were very busy with this patient.
At about 2 am the vomiting started. It was so forceful and strong I could hear it through the pale blue concrete walls. It went for hours and was so violent it sounded like an adult male was doing it. When Zali woke with a fever and needed Panadol at 4 am I buzzed for the nurse who came already prepared. I wondered why they hadn’t given the patient next door anything to stop the vomiting. It was a pretty easy thing to do for oncology patients and I had never heard one vomit that badly before. Zali went back to sleep and I did too.
In the morning at about 7 am I was in the corridor having a look at the observation chart of Zali’s night when an elderly Mediterranean woman came out of the room next door. Behind her the room was completely empty. She was dressed in black – black scarf over soft white curls, black cardigan, black skirt past the knee, black stockings and sensible leather shoes.
I smiled and said, ‘Okay?’ as I couldn’t hear any more vomiting, and didn’t know how good her English was.
She told me in broken English that no, things were not okay. Her granddaughter had died the previous night. Cancer. Her son, the girl’s father, couldn’t stop vomiting from shock. She shook her head sadly and walked slowly down the hall and out of the ward.
That poor family.
A week later a funeral was held for the little girl, and five nurses from the Variety Ward went and cried with the family. That’s the type of people the nurses were. They were 100 per cent compassionate, even when it cut into their personal lives and this must cost them emotionally. That was my first experience of death in the hospital.
Saving Zali Page 10