Saving Zali
Page 21
Our nurse that day was the incredibly good-looking, tall, thin, blonde and slightly gangly Jo. She looked young and inexperienced because she was energetic, friendly and beautiful, but she had solid experience and was surprisingly unflappable and organised.
Andrew went back into the room and I took a breather, going to the small kitchenette and grabbing a lemonade icy pole. I brought it back into the room, slurping it quickly as it melted. Andrew had told Jo what we’d been told, and she was showing good taste by not asking if I was okay. I sat down next to Za, who started gesturing and telling me loudly through arm waving, psychic pressure and intense stares that she wanted the iceblock. Feeling reckless and anarchic, I asked Jo if I could give her some. Really, at this stage did it matter that much? She looked out the glass door, and without looking directly at me said out of the side of her mouth to let her have a tiny bit and she would suction straight away afterwards in case any went into her lungs.
I held the iceblock up to Za’s lips and she scoffed as much as she could the instant it touched her mouth. She was able to slurp an amazing amount in a few small moments. She loved every bit of it. It was the first ‘food’ she had consumed in months. Jo suctioned out her lungs after that, but not much had gone into them. Over the next two days we built up the number of icy poles, with a few trusted nurses allowing Zali to have up to five full iceblocks a day with immediate suction to stop infection.
On Wednesday 23 September, Dr Barry, the chief doctor in charge of PICU returned from holidays. He was highly respected, serious, sombre and ran an ordered ship. He was tall and thin with a stoop and walked slowly in long measured strides. His brown hair was thin on top, and his glasses always seemed to be about to fall off his long nose on his long face. The overall effect was of sober contemplation and control, which is as it should be in such a unit.
The buzz went through the ward as he got closer to our room at the end of his first day back. I had an icy pole, which I had been sharing with Zali. It was melting quickly but Za and I wouldn’t be able to get through it before he came in and we all got caught. As I went to toss it in the sink, I saw the first of his entourage come towards our room so I sat back down, trapped with my offending article. I sat on a chair on the opposite side of the room to the glass door, with Zali’s bed between the doctor and me as I tried to hide the iceblock by the bed.
Dr Barry entered the room and our friendly nurse Jo immediately became a dazzling, serious professional, talking to him about specific medical details I didn’t understand while he nodded his head in agreement with her summary. He listened carefully then turned his serious gaze to us and introduced himself. We greeted him in return but ventured no further into the conversation, as we were clearly to have a strictly professional relationship with this man.
As he went to leave the room, he stopped at the glass door, his hand on the handle but the door closed and his back to us. The rest of his group was already outside. Without turning around he said, ‘Oh, and Jo?’ with forced casualness that was completely out of place on him. The comment was made to her, the person in charge of the room, but really it was directed at all of us. We all froze. ‘The iceblocks?’ Long pause. ‘They are probably okay so you can stop hiding them now.’
I snorted laughter and said thank you, and Zali had the rest of the icy pole for dinner.
I firmly believe that those icy poles got us over the calorie line those two days, thanks to the gangly Jo. Every moment longer we could hold on meant we could give someone a bit longer to work out how to fix her calcified, frantic heart, and stop her starving because of it.
Chapter 49
Thursday 24 September 2009, 145 days in hospital
98 days in PICU
The predicted last day
Panic and fear were starting to pull at the edges worse than ever for me. On Monday, the dietician had taken our previous countdown of six weeks away from us and in return given us a week at most. By Thursday, though, with my eyes now clear to Zali’s true state, I could see she wouldn’t make it to the following Monday. Each five minute chunk that I counted down and she was still alive for was miraculous at this stage. Her greedy racing heartbeat was causing Za to starve by taking all the calories. The last few days’ survival had been dependant on TPN and icy poles, but Za couldn’t last much longer like that.
The disease was gone, an incredible, unlikely achievement and in anyone else it would have been cause for massive celebration. In that proclamation, though, Professor Kellie had estimated that we still only had six weeks left. Her broken body, ravaged by disease and side effects of disease was just not recovering from the attacks. We hadn’t seen Professor Kellie since that news but he had been wrong about having six weeks left. The time line had been corrected by the dietician to one week, but it looked like Za wouldn’t even make it to that.
I was teary all the time. Since Monday I had spent as much time as possible in Zali’s room, up to sixteen hours a day. I felt desperate. I was jittery. I spoke too much and too little, too loudly, with too much force, or not enough. I couldn’t connect with people and I watched conversations too closely. The days were passing quickly. Andrew and I were the only ones in our immediate family who knew how quickly time was running out before the estimated finish line. We told our relatives about her progress but not that we had an end date. They knew Za was extremely sick.
I was so afraid. I knew what the end would probably look like – we had been there often enough now. I knew that it was physically impossible to make her heart just calm down. Even when sleeping, if assisted by a bolus fentanyl dose—an extra wallop of fentanyl—her heart rate was still 165 beats per minute.
The doctors told us that morning that each day we had Zali now was a blessing. It didn’t feel like much of a blessing. Just like that they took away the last buffer of time we had. They didn’t expect her to last much longer.
She was very tired. She didn’t talk or move much. That took muscles and energy she didn’t have.
It was a strange day for the end to be predicted. A Thursday. It’s not the end of anything on a Thursday. I felt so strongly that if they could just find a way to help her hold on a tiny bit longer, just give her a tiny bit more time, she could recover. She was just resting. Her body was resting. It was attacked so badly, it just needed a big break. I felt that we should continue to carry her while she rested.
All I could think about was how much longer we had left. My head was filled with manic mutterings, obsessed as I was with time: Give it time. Things will get better with time. Timing’s everything. Do you have the time? What’s the time? I just want five minutes of your time. I’ll give you two seconds to … What time do I have to … How many times … You are on time. Hold on until lunchtime. Hold on another hour. Hold on five minutes. Just hold on till I get back from the loo. Beats per minute. Ticking seconds. I need more time. Not this time. You’re out of time. Time’s up.
I feared she’d pass into unconsciousness. If she did they would start euthanasia talks with me. I had heard other parents’ versions of it and I had heard scraps of sentences about it from the doctors. They would start talking about lowering her ventilation support. She couldn’t breathe without it. Perhaps her heart medication would be reduced. Her heart couldn’t beat its paltry flutter without it. They’d increase her pain relief until the demands of fentanyl outweighed her need to live. She needed to sleep, but she couldn’t because of her racing heart. I feared she would fall asleep and not wake up. I knew I couldn’t sleep.
I had no words when I was at home in the unit that night. I asked Kala about her day. She just said ‘Good’, then in an effort to connect told me about people I don’t know, music I don’t like and dance moves I don’t understand. I didn’t give her any response. It meant nothing to me.
She called her mum, Michelle, and texted her sister about how horrible I was, how lonely this was for her, how much I didn’t care about what everyone else was going through.
Michelle called Andrew.
Lachlan’s dad called and complained I was making him drive too far to see Lachlan. I didn’t care. I put the phone down as he talked and I washed up, then dried up, then hung up on him mid-sentence.
I opened the mail. There was a letter from the bank. It showed the amount of interest and payments we had missed. They expected it back in one payment eventually. We didn’t have that sort of money. I didn’t care. Take the house.
I wanted to let go. The pain was too much. I didn’t let go, though, because Lachie was holding onto me. Andrew was holding onto me. If I had let go, Lachie would have been lost. If I had let go Andrew would have let go, and Kala was holding onto him. Zali was holding onto me, and I gave her strength. I kept going. I just needed more time. How far away was the finish line? I needed a sign.
Something.
Anything.
I lay awake in bed for hours that night, numb. I couldn’t sneak back into the hospital, Lach suspected something was up and I couldn’t desert him and confirm his worst fears. This was my own worst fear and living it was too much for me. I dozed lightly that night and dreamt of the crushing force a heart creates as it pushes blood around the body, and how much my love for Za, contained in my heart, was crushing me, but it wasn’t enough to save her.
Chapter 50
Friday 25 September 2009, 146 days in hospital
99 days in PICU
One day past the predicted last day
Zali slept very well that Thursday night, but was exhausted by 7.30 am. She was barely moving and was very pale.
I got there at 6 am. I had not slept well.
The PICU doctors on their morning rounds asked Andrew and me both to hang around as another doctor, Dr Munns, wanted to talk to us. He was from Endocrinology. I had absolutely no idea what endocrinology was. I assumed it was about glands but that’s as far as I got.
Zali’s parathyroid glands, small glands that surround the thyroid gland in the throat, were suspected of overproducing calcium, as the calcium count in her bloodstream was very high and, as the CAT scan had shown, her organs had calcified. This is called hyper-parathyroidism. I assumed it was an unfortunate overreaction from a stressed body. Nurses told me there wasn’t anything that could be done to stop it. The disease had travelled essentially to every part of Za’s body except her brain, and the parathyroid was doing what it could. Wherever the Langerhan’s cells had attacked the healthy cells they caused inflammation and the body had dumped calcium in places where it shouldn’t be.
Zali’s bones had no calcium in them because of chemo and trauma. She had trauma rings at the ends of her bones near the growth plates, where growth had stopped and started during this time and minerals had been dumped. In X-rays, where there should have been stark white lines of bones on a black background there were only ghostly pale streaks.
I assumed Dr Munns was going to try to fix the parathyroid gland so there was one less part of her body failing. I had no idea what he did and actually didn’t think the gland was such a problem that an expert would come and see us at this late point of the game. I thought it was probably an indulgent time-waster to take my mind off the end and make me feel like things were still happening despite the obvious finish coming soon. I didn’t give it much thought.
He came into the room just before lunch, flanked by an understudy, as most of the senior doctors were. He was the most completely unassuming, humble, quiet man. He was tall and skinny, with short brown hair that had gone bald on top. He had a big smile that he shared easily but he was generally serious and his mood matched our situation. He wore dark blue jeans and dark brown shoes that looked like RM Williams boots. He looked a bit shy and definitely the thoughtful, nerdy type. I like nerds, so I was immediately curious about him.
Though he would have already known everything, he asked politely about Zali. He nodded while he waited for our part of the conversation to finish before he pushed on with why he was there. He talked to us about the parathyroid problem. I heard an interesting mix of accents in his speech, maybe English or South African and Australian.
Then he said the most remarkable thing. He was clear and eloquent and his words were the most beautiful words anyone has ever said to me. So full of colour and sunshine, like a rainbow reaching right into my soul.
He said, ‘I think I can fix the problem with Zali’s heart. No, I’m sure I have the answer and I can fix the calcium problem in her heart.’ He nodded in casual agreement with his own statement as if he had just said something as simple as the type of dog he owned.
My mouth dropped open and I gawped at him. The answer he was thinking of was clearly obvious to him and he seemed a bit surprised that nobody had thought to ask him earlier. He said he had seen the emails going around the hospital about Zali. I couldn’t tell if he had replied to the emails and was ignored, or hadn’t had a chance to reply. There seemed to be an uncomfortable silence surrounding the gap between when the emails would have been sent several weeks ago and his arrival at our bedside. He seemed the persistent type, so I suspected that his answer had been ignored. I wondered why any solution would be overlooked.
I didn’t know what to say. I wanted him to like us, to work hard for us and make this work, so I quickly tried to get over my initial apathy and make some small talk. It must have been horribly awkward as I think I looked like I was about to devour him – he was the only interest in my world at that moment. To avoid an overly emotional moment, he quickly disengaged and left with his offsider, telling us he would have a look into what he was thinking and get back to us that afternoon.
I wanted to leap up, race after him, pounce on him and tell him we didn’t have any time left, that he didn’t have time to go and check. I wanted to challenge him, ask him how he could fix a heart by fixing a gland. Did he really know what he was doing? It was pretty cruel to fuck around with us like that. Was he for real? My mind was swirling. I could feel hope starting to beat inside me and the feeling was so unusual it made me feel sick.
I didn’t know what ‘this afternoon’ meant. What time exactly would he return? I went through all the options in my head: he would have his lunchbreak, they deserve that; he would have to call someone about the drug; he would have to write the script, get it made up and brought to us. Would he have to clear it with the doctor currently in charge of PICU? Would he have to clear it with Professor Kellie? What if Professor Kellie said no? I guess he wouldn’t have been able to talk to us about that solution if they had disagreed about it. Maybe he had got that done quickly already. What if we weren’t here when he came back, would they wait until the next day? We most probably didn’t have a ‘next day’. Would they go ahead if we weren’t here? What if it killed her?
Andrew and I took our lunch separately so one of us was always there with Za should he come back. I literally ran to the cafeteria, bought a chicken wrap and ate it on the way back, throwing the rubbish in the bin at the nurses’ station as I re-entered the room.
Things were getting busier around us. More nurses were asking more questions. Charts were being meticulously attended to. Something was happening.
We waited impatiently. Our nurse was starting to get questioned a lot by passing doctors about Zali’s basic health status. I could have answered any of those questions. I had my own. Where was Dr Munns? How quickly could we start? Is this going to work? Andrew and I were cautious. We were excited that he might have a cure but were bracing ourselves for the finish. I didn’t think the solution he might come up with was going to make it in time. My heart had been so heavy for so long, I didn’t think there was anything that was going to lift it. I didn’t think he could come up with something powerful enough to stop this. We had tried powerful. It didn’t work. It was too much.
Two pm came and the doctors requested a meeting with us at about 4 pm. That was so late for a hospital – people l
iked to be finished by 5 pm. I wondered if the solution wasn’t going to be put in motion until the following day. I didn’t really want to go to a meeting because I was worried that a room full of doctors was about to discuss with us the futility of continuing on. Under the pressure of so many doctors saying the end had come, would my protest that they needed to try every possible option be heard? When I told Cecelia what was happening she immediately agreed to come with us. If it went badly I wanted a friend there on our side.
When Cecelia, Andrew and I entered the conference room, it was full of experts for every organ in which Zali had experienced failure, plus various others who had been involved and Professor Kellie. There were representatives from fifteen different groups of specialists, ranging from surgeons, the bone marrow transplant team, renal experts and haematologists, a dietician I hadn’t met and cardiologists. Dr Munns sat alongside the high-ranking PICU doctors and Professor Kellie. Clearly they had been discussing the matter before we entered, and we were sitting in the chair to hear the verdict. To hear Zali’s sentence.
Dr Munns said, ‘I know how to fix the problem with Zali’s heart.’ Again, those incredible words coming out of his mouth. Clear, certain, beautiful little fireworks in my body.
He explained that he thought a regular infusion of pamidronate would fix the problem. It is a drug used for people who suffer from osteoporosis. It takes the calcium from their blood and places it into their bones, strengthening them. He thought this drug would melt the calcium off Za’s heart, lungs and arteries and that this load of calcium would then be put into her ghostly bones. The bones, once again full of calcium, could create the bone marrow needed to produce blood again. The parathyroid gland would no longer be stressed if the overall health of her body improved and might stop producing so much calcium.