It was amazing. I finally felt like I could pull a protective blanket around everyone in my family and give us privacy, comfort and an adjusted life more closely resembling family life. It was just so exciting.
Once back in the unit Zali became completely clingy, which was totally understandable. She couldn’t remember a lot about life before the hospital because she had been so young. She had never lived in this unit, and our routines were foreign to her. She had been subjected to one scary experience after another and had lived in a small room with a limited view when she had been in PICU. Life must have been a hallucinogenic haze for her when she had been in there due to all the drugs and strange body experiences.
As she wasn’t very heavy anyway, and was no longer constantly hooked up to one drip or another I just kept her on my hip as I went about my chores at home. It was a bit tricky because she was floppy like a newborn, but so long as I supported her neck she was okay. Everything was fine if I just kept her close, and she clung to my shirt with her little hand like a baby koala.
That evening I made a dinner I thought about, which I hadn’t done in a long time. I put effort and care into it and enjoyed the cooking. We had steak and three veg. Kala put tomato sauce in the mashed potato and turned it pink. Both Lach and Kala complained about the beans but ate them, and Lach said every mouthful of steak had gristle in it and half-chewed it then spat it out. Everyone enjoyed the corn. Andrew had the news on in the background on the TV as he ate his steak, happily chatting with everyone about their day. It was wonderful.
Zali sat strapped into a blue foam support chair watching us all. She became overwhelmed by the whole experience and got upset. She was hooked up to some formula, which was running through her nasogastric tube so she was getting dinner too, but she was interested in food more than anything, so I sat her on my lap and helped her eat mango and banana.
All her food was soft because she was still learning how to mash and swallow with her tongue again after it being out of use for so long. For dessert she had Cheezels, which dissolve easily in the mouth, and everyone else had Sara Lee ice-cream. This normal family interaction with all its complaints and compliments was such an incredible luxury. I was deeply grateful to have a centred family life again.
That night I hooked up Zali’s soy-based double-strength milk formula to her nasogastric tube. As she had lost so much weight, it was really important to keep her fed as many hours of the day as possible. Calories in needed to be bigger than calories needed to rebuild. Fresh food has qualities that the TPN and formula just don’t replicate, so by using food and formula equally she was getting big doses of calories and a special something on top. Of course nutrition was important, but more important than that was simply her overall weight. Weight is a significant buffer in sick children because it gives them extra reserves to draw on for particularly difficult battles.
It was very important to get weight and vitality back should there be another battle that might sneak up on us if the LCH returned quickly. Zali was hooked up to a mobile drip with formula for fourteen hours a day, the biggest chunk being at night while she was sleeping.
The formula is sticky, and the nasogastric tube would kink and get twisted while she slept, so during the night it had to be changed and a new bag hooked up. For every problem there was an alarm that sounded. At the start, in the middle of the night, I was terrible at swapping the bags over. Milk would spill all over the floor, and Zali would be upset by all the disturbance and confused about where she was.
It wasn’t ideal for her stomach either, to feed her while she was sleeping. A big meal over a long time when you are lying down is likely to make anyone restless and a bit gurgly in the stomach. She would often throw up during the night, simply from too much food. To me it was a horrible waste of many hours of work, so I quickly cut down the feeds to half of the night and gave her as much as I could during the day.
Food was offered to and accepted by her constantly on top of all of that. Protein foods and fruit were her favourites, as she definitely still had elements of pica, choosing food she particularly needed.
Our first appointment as outpatients to the Oncology Clinic was the day after discharge, on Tuesday 13 October. We had a 10.30 am appointment, which meant we had to have bloods taken in the hospital by no later than 9.30 am. After getting bloods taken we went to Oncology to wait for our appointment. We had been warned that Oncology was always late and to be prepared for a wait. As we entered the brightly lit clinic there was chaos. Children played with toys and textas and paper, they played on computers and Xboxes. The TV was switched on at one side and a lot of children had portable DVD players and were watching movies. Children were receiving treatment such as chemotherapy as they sat in large recliner chairs, and there were closed-off rooms for other types of treatment. Popular children were being greeted by nurses and doctors in a friendly and casual way. Children whinged, played and cried. Parents talked and filled in forms and went into appointments. Doctors powerwalked from one appointment to another. It was very, very busy. As I went up to the desk, the brusque and efficient nurse greeted me and got me to fill in forms. She didn’t know me, or us, or our struggle. We were told to wait outside in the waiting room in the corridor because although Zali no longer had any infections herself, she still had ESBL in her central line and that hospital superbug was a threat to the immuno-compromised. She also mentioned that Professor Kellie was running late. We left the busy, bright, entertaining clinic and sat in the quiet corridor with nothing to keep us occupied except ourselves.
Professor Kellie was running very late. I checked at 12.30 pm whether or not we would be seen soon. The clinic resembled more of an emergency ward by then. Concerned doctors were powerwalking quickly everywhere. The tone was that something had gone wrong.
At 2.30 pm a child on a trolley was wheeled out the back door, where we still sat waiting. Another parent told us that during an operation to check his spinal fluid something had gone wrong and now he couldn’t move his legs. At 4.30 pm Professor Kellie finally saw us. We had a fifteen-minute visit – he told us everything was fine and that he would see us again the next day.
Although I was very frustrated there was no point complaining. What would I say? Excuse me, other sick children made our appointment six hours late? As I talked with the nurse at the front desk she told me that the days didn’t usually go that late, and that it had been unusually busy. If I could get to the hospital early, I had more chance of seeing Professor Kellie on time. She also said that if we called the other therapists and specialists while we were there they might be able to come and see Za while we waited for Professor Kellie, saving all of us some time. The rehab people, such as physio, could come and do rehab with her while we waited. At least that would help pass the time.
Now we faced new rules, new expectations and a new level in the pecking order. Thank goodness the nurse gave me the heads up.
Chapter 57
October–November 2009
Za would wake up several times during the night. Things had been happening to her at regular points during the night in PICU and her body clock was set to wake up then. She was still on doses of diazepam that would be cut down over time, but she needed that pain relief during the night. Each time she woke up she would cry but was reassured easily that whatever she feared was about to happen was never going to happen again.
At about five o’clock each morning I would hear her croaky but improving voice say, ‘Wock and woll, Mum and Dad? Wock and woll?’
We were so pleased to just be with her that of course we would agree every morning to rock and roll. Andrew and I would quickly get dressed and get her dressed. We’d put her in her pram and rug her up, though it was coming into summer so was getting warmer, and we’d go for a walk around the suburb. At about 6.30 we’d stop at a nearby McDonald’s and she would have a poached egg, then by 7.30 we’d be back home, where she’d have dry Nutri-Grain while she was hooked up to her formula. Lach would get ready for school and
we could help Kala pack her lunch and get sorted for school too. Although Kala didn’t need any help, it was much less lonely for her to have someone to talk to while she got ready. By 8.30 am we would walk Lach to school as Kala headed off to catch the train.
The first few days after our discharge Kala hung around the unit instead of going to school. Perhaps she felt she would have a chance to get to know her little sister better, or communicate with her dad better now that we were at home and more relaxed. Unfortunately for her, we were just as boring out of hospital as we were in hospital, but it was still nice for her to spend some calm time at home. Lachlan just moved on with his life, assuming it was all or nothing. Za was sick, so he couldn’t have me, Za was getting better, so he had me back. He was pretty easy to keep happy.
After the school run in the morning we would head to the hospital for all our appointments with the many specialists. By lunchtime, after several hours of rehabilitation and specialist visits, we were usually finished and returned to the unit. Za would have some ham or other protein along with her constant sampling of every food around her, then she’d sleep for four hours. During that time I’d go and get Lachlan from school, pick up some groceries on the way and return home. Za was eating so much and making every effort to catch up, it was quite a race to keep food replenished.
Sometimes Andrew would drive into the city to pick Kala up, or meet her at the train station and walk with her. Za usually went to bed at about 6.30 or 7 pm and would sleep for another eleven or twelve hours. There was a lot of catching up her little body had to do. And we picked a simple routine to follow as we got closer to 3 November, Zali’s second birthday.
News of Zali’s incredible recovery swept through the hospital and it was a very big deal. The public relations area at the hospital had heard about it and approached us during those first few weeks to ask if we would come in and have some photos taken to see if Zali might be the child ambassador for Bandaged Bear 2010, the hospital’s major fundraising effort. We were very flattered and agreed. I told them it was still hard to get her to smile but I’d bring her in and have a go.
On 3 November 2009, Zali’s second birthday arrived, and though it appeared to be a day just like any other, sunny and hot, it was in fact a momentous occasion. Around a child’s second birthday their body physiology begins to change, and the risks they had as a very young child begin to pass. We had moved scientifically from the ‘little chance of recovery’ category into ‘long-term survival rates’. The rates of long-term survival for children who had multisystem LCH are 20 per cent at best. LCH likes to come back, sometimes in the form it was previously or sometimes in new and more difficult versions. Each time it is resistant to chemotherapy treatment, but the patient who has received the chemo is weakened from ongoing heavy battles. Convincing those cells to not overproduce again is extremely difficult.
In our mind this was equivalent to 100 per cent. Zali had reached two years old. She had made it to her birthday, and was cancer-free and out of hospital. I was very proud of every person in my family that day for fighting so hard and pushing through.
I dressed Zali in a peach and white spot surfer dress I’d recently bought her and took her into the hospital for some test photos. As I sat her up on the hospital bed she was tense and suspicious, but I stood next to the photographer and hid under her favourite spotty blanket, popping out and pulling funny faces or making silly noises. She laughed and laughed and had a terrific time.
The photographer got some great shots and we returned home. I made a chocolate cake decorated with icing and strawberries, and Kala decorated a corner of the lounge room with streamers and balloons. That afternoon we had a small family celebration for Zali’s second birthday and it was perfect. Za just ate the strawberries, ignoring the cake, and everyone relaxed a little bit more.
Chapter 58
November–December 2009
We only had seven weeks to the end of primary school for Lachlan and Year 11 for Kala so we decided to stay at the unit until school finished. This would give both of them a chance to finish strong at their schools for the year. When school finished we would transfer Zali’s rehabilitation therapy back to the coast and have her blood tests and line cleaning done at Gosford Hospital. It felt wonderful to choose to put Lachlan’s and Kala’s needs first. I could offer them several weeks’ security and stability.
Lachlan had an end-of-year disco and invited a friend from the hospital to come with him. Kala had her Year 11 end-of-year dance performance at Star City Casino, and Andrew, Lachlan, Kath, Rob and Danni went and watched while I stayed at home with Za.
There were school reports, end-of-year photos and class Christmas celebrations. The weather was hot and dry for an iconic Australian summer, and it was delightful to walk Lach to school in the morning, and a little bit too hot when I picked him up in the afternoon. On the way back home from the school walk in the morning I would usually buy Za an ice-cream and some ham from the corner store and then we would go into the hospital for treatment. Za loved the walk each way, though she was usually asleep in the afternoons and I just went up and back to the shop on my own. It was just so normal and an incredible thing to be doing. Andrew and Lach went back to the coast each weekend to see friends and family and prepare the house for our return. Kala stayed over at her friends’ houses and went to dinner and movies in the city or shopping.
Za started getting stronger, and was able to sit up, move her arms easily, and support her neck. Those muscles came back quickly and her face filled in again with the massive amounts of food she was eating. She loved any type of protein food, fruit, and especially Cheezels and chocolate. The scratches healed slowly and her skin was a beautiful colour, perfect baby pink. She was really light but was very tall. I did ask if something was wrong with her height at one of our many clinic visits: had the growth plates been affected, was the disease in her thyroid gland? The doctor pointed out that I was tall, my brothers were tall, Lachlan was tall and she was born tall. I was waiting for the sucker punch, but his answer was, ‘It’s genetic, she was born tall. She’s perfectly normal.’ What an outrageous thing to say.
Her legs were taking a bit longer but she was getting extensive therapy, and she behaved as if she just assumed they would eventually work again. She put on weight quickly and her interest in people around her and the possibility for fun returned, along with her family-oriented personality. Physiotherapy, which she got every day, was her favourite thing to do. She played with boxes and boxes of toys and felt like she was being indulged, but actually she was learning how to coordinate her arms and body again and build up their strength.
Lach’s mind hadn’t been on school all year, but he was still happy to go and hang out with friends even up to the last day, which he usually tried to get off. The last week of school was busy for us. We spent it cleaning the unit, packing our things, and transferring rehabilitation back to the coast. I couldn’t believe we could pick an end point. That we could say, ‘I’ve had enough of here, I’m going home,’ but that’s exactly what we did. After school on 18 December 2009, the last day of Year 6 for Lachlan, we handed our keys in and went home to the Central Coast.
Finding out your child has multisystem LCH is like being thrown onto the highway at 220 kilometres per hour, hurtling along with no brakes and no idea where you are going. When the battle is over and you return home it’s like someone pulls on the handbrake and you yank into an unfamiliar garage that people tell you used to be yours. We were left panting, confused and still ready to crash. Although we didn’t have the huge swings between emergency and boredom, or screaming alarms and peaceful rest, life was still full of contradictions.
We were elated to be at home but terrified something might go wrong. I had experienced more fear and doubt and uncertainty than I ever thought I would, and I was still shaking from it. Work was the last thing on my mind and I had decided before we returned home that I would leave the NSW Police because I no longer had the heart or strength to risk my
self for strangers. I had taken enough risks. It was time to stop and rest.
Andrew had finally been discharged from the NSW Police medically unfit. As soon as we received the letter saying he was finished, it was like an enormous load was taken off his shoulders. He was excited about starting his plumbing business. After his time away from the industry we were nervous about how this would go, but we had to make it work because he was the only income-earner.
Lachlan couldn’t stretch out into the world because he was terrified of having panic attacks again. He really wanted to be better. Intellectually he knew that everything was okay now Za was out of hospital, so he was confused by his anxiety. I could see that the randomness of Zali’s illness had taken away all his certainty, so I worked on doing things with him that would reassure him he was safe.
We were all still very raw and shocked. Sitting still and quietly was the only option. The stillness of everyday life, and the speed of everyday life, were completely disorienting. The noises were both quiet and deafening. The noise of the garbage truck and the postman scared the daylights out of Za. The freedom around us was as vast as the desert in the outback and just as uncontrolled. People were all around the places I went to, but they didn’t have anything to do with LCH or the hospital, which totally confused me, as that had been my entire world for six months.
There were people laughing, dogs going for walks on their own, old people complaining about young people on the radio and lawns to mow. There were demands on me that required me to think beyond the next few hours or days, and I found myself really struggling to plan that far ahead.
Everybody in the house was so keen to get back to normal life, but nobody was really sure what that meant any more. I stuck to the very basics as we all literally learnt to walk again. I would take Zali to the beach and have a coffee and walk her around on the soft sand, holding her under her armpits like a bubby who’s learning to walk. As Za tired easily and the world was a bit overwhelming, I’d take her home after that. She’d have medication and a sleep – during the day she’d have six hours’ worth of naps. Andrew would come home from plumbing for lunch. Lach would play on his bike, watch TV, do some schoolwork for his missing time at school and just be a boy. It was a very simple routine, but I was sticking to the basics of what I knew.
Saving Zali Page 24