by Brad Haddin
Karina got a puzzled look from Dr Luce when she said one day she wished Mia would just go to sleep and stay that way for the next 24 months, but I understood exactly what she meant. Many things were hard to deal with in our new reality, but the worst thing of all was seeing Mia in terrible pain and discomfort and not being able to help her. At least when she was asleep she mostly looked serene, as though she wasn’t suffering.
I couldn’t believe what my poor little girl had to endure, but the really incredible thing was how tough and stoic she was. She didn’t understand much more than that she was sick and everyone was trying to help her. She wasn’t even 18 months old, so she had no capacity to grasp the big picture, which was that her life was at stake and we hoped that if she endured some very hard months now she would have many, many years of life in the future. She had no concept of time or how long all this was going to go on for. And yet, when she wasn’t tossing in a fever or crying with pain, she was smiling and laughing and looking curiously around, taking it all in with those beautiful blue eyes.
Mia had been a wonderfully cheeky, spirited kid from the moment her personality first started to show. Just ask the priest at her christening. She kept readjusting his glasses for him the whole way through the ceremony. At first everyone tried to stifle their amusement, but by the end, the whole church full of family and friends was laughing, including the priest himself. No-one could have blamed her if everything she was going through in hospital knocked that out of her and turned her into a withdrawn or wary child, but it never did. Even gravely ill, she remained her bubbly bright self, and that was a big part of helping us stay positive.
Don’t get me wrong — both Karina and I had fearful moments when despair beckoned. But they tended to fall on each of us at separate times, so that when one of us was struggling, the other was there to pull them back up. We were both determined to remain optimistic. On the one hand we knew it would be a huge blessing if she made it to her second birthday, but on the other we refused to allow ourselves to be terrorised by thoughts of her death. And we never, ever wanted Mia to pick up on any negative or frightening feelings from us, so we made a point of taking our cues from her uncomplaining sunny nature.
Up until this point she had been getting some feed in liquid form delivered through her nasogastric (NG) tube, but this was only meant to be a supplement. The idea was for her to get 10 per cent of her nutrition this way and the rest from eating her normal food, and drinking bottles of milk. But she had painful chemo-induced mouth ulcers, besides which she was too sick to want to eat much, and when she did she couldn’t keep it down. So she was switched to something called total parenteral nutrition (TPN), whereby her full nutritional needs were delivered in the form of fluid straight into her central line. She still had the NG tube in, however, so that her medicines could be administered and the fluid building up in her stomach could be sucked out.
She had tubes running everywhere and there was frequent discussion about whether they were positioned in the correct places deep within her body. Following the first chemo cycle, there were a couple of days where Mia seemed to be in frequent pain despite the drugs, so on April 5 she was given an x-ray of her torso to check the NG placement. The x-ray showed that indeed the tube did need to be repositioned by several centimetres. But it also just happened to catch the fact that she had a broken bone. Specifically it was a fracture of the right humeral head — if you picture where the arm joins the shoulder as a ball and socket, this is the ball part. It was horrible to think she had been in extra pain with a broken bone and we hadn’t known.
The medical team said that, even though the cancer had metastasised into Mia’s bones and weakened them, this was a very unusual complication to have and they couldn’t say precisely what had caused it. (The vast majority of the many people treating her were fantastic, but I couldn’t help wondering darkly if someone had been not quite careful enough getting her into position for a procedure. I tried not to dwell on it.) The upshot was that she now came under the care of an orthopaedic team, as well as oncology and surgical teams. They told us that the bone was very unlikely to heal properly while the tumour was present, and that they would need to immobilise it in a sling pressed against her body for four to six weeks. That was a big ask for a toddler, and yet another thing she had to put up with.
It so happened that Mia had the x-ray and we found out about the break when I was at the hospital and Karina was at home with Zac and her mum. She was distraught when I rang with the news. She left Zac with Marg and raced in, bursting into tears again when she saw me. I understood how she felt — as tense and distressing as it often was at the hospital, it was always far worse to not be there. Even when I couldn’t do a thing to change the situation, I felt driven to be there as much as humanly possible and Karina felt the same.
So far we’d been splitting the days and nights between the two of us, with one or other of us always with Mia. Karina’s mother and mine also spent time with her, particularly when she was in PICU, where they would sit with her for a couple of hours to allow Karina to go down to the ward and take a nap. They also spent a huge amount of time looking after Zac. The support we were getting from our families was fantastic, but by early April it was obvious to everyone that we couldn’t keep going as we had been, organising things on the fly just a day or two in advance. Zac needed a predictable routine and we had another baby coming in a matter of weeks. We needed to figure out a new arrangement.
Karina and I didn’t have to spend any energy on it; without having to be asked, our parents got together and came up with a system that they felt they could sustain as long as it took to get Mia through treatment. All four of them worked. Mine ran the family building business, with Dad on site and Mum taking care of all the admin. Phil also had his own business, servicing ATMs, while Marg worked Tuesdays and Thursdays as a secretary for a small firm of financial advisors. The four of them figured out a system whereby the mothers would cover half the week each while the fathers picked up as much of the slack as possible. My mum would drive up from Queanbeyan each Sunday and stay until Wednesday afternoon, when Marg would relieve her. Marg would then be on hand until Sunday, when they switched over again. As well as looking after Zac, they cooked and cleaned and washed and did whatever else was needed to keep the house going.
Marg, who had a very understanding boss, changed her work days and Dad got in some extra help to make things easier for Mum. But even so it required an enormous effort from them and they did it unhesitatingly. Dr Luce remarked on it to several of us over the following months, commenting that in all the years he’d been a doctor he had never seen a family pull together the way ours did, keeping it up for the long haul. Mum expressed surprise when he said this to her, replying that she couldn’t imagine family members not wanting to help. He explained that most did, at the beginning. There would be an intense period following diagnosis when everyone pitched in, but then they would drift away back to their own normal lives as treatment ground on and on.
Mum just shook her head at this. Not helping simply wasn’t an option for her or Dad, just as it wasn’t for Marg and Phil. Dad has a saying: ‘I have family and I have acquaintances.’ It’s a jokey exaggeration. Of course, he has friends, but what he means is family is everything in life. Without family there’s nothing. (And in fact his close friends become like family to him.) All us Haddins feel the same way and so do Karina’s entire family. I realise we were incredibly lucky to have all four parents alive and well and living close enough to step in. I just can’t imagine how people who don’t have that kind of support cope with one child in hospital and one or more at home.
Having the new system helped Karina feel less anxious about Zac. He still found it very unsettling to be at Westmead and he didn’t even like it when people talked too much about Mia’s medical details within his earshot at home. With his two loving grandmas on a regular schedule that enabled him to sleep in his own bed every night and go off to kindy and swimming and his other
activities as usual, we were hopeful he would soon feel more settled again.
Marg and Mum did their Wednesday ‘handover’ at the hospital, so they both always saw Mia then and they also came out to Westmead when they could at other times. Their contributions were absolutely essential in helping us to keep going, but both Karina and I sometimes wondered how we were going to get through the day. It was rare for whichever of us stayed by Mia’s bedside overnight to get more than a couple of hours’ sleep and there were times when we barely had the energy for a simple ‘Hello’ when the other parent arrived in the morning.
The rest of our family and friends continued to go out of their way to support us, finding presents for Zac to let him know he hadn’t been forgotten, or craft or games to help keep Mia occupied when she was feeling well. Mia wasn’t too fussed about particular toys or dolls in hospital, she was happy to swap between them, but her beloved blanket was another matter. It was pink and matched a green version Zac had (and still has); they’d each been given them at birth. Zac’s had acquired the nickname ‘poo blankie’, so that became the name for Mia’s too. She loved her blankie and got very upset when she couldn’t have it. But she was throwing up so much it often had to be taken away to be washed. There were days when I drove home just to wash and dry it, then got it back to her and an hour later was in the car again heading home to do it all again after another vomit. My cousin Michelle took it on herself to find a solution. She spent days driving around Canberra visiting every department store and baby shop until she was able to ring and say excitedly, ‘I’ve found it! And I’ve bought six of them.’ Thoughtful gestures like that made a big difference.
By mid-April Mia was partway through her second chemo cycle and her hair was falling out. She was alternating between drowsiness, the unhappy discomfort of vomiting and rashes, and cheery wide-awakeness. Because she’d lost all connection with normal circadian rhythms, the wakefulness would often be at 2 a.m. The worry, stress and lack of sleep were really taking their toll on us, especially Karina, who was now nearly eight months pregnant. She texted me in the middle of one night, very upset after having given in to the urge to go onto Google and look up information on neuroblastoma survival rates.
In the hope that it would help both Mia and us, on 16 April Mia was allowed outside the hospital for the first time since she had arrived at the Emergency Department 31 days earlier. As excursions go, it wouldn’t have even registered before she got sick: being popped in the pram and taken for a walk around the grounds. But after a month of nothing but walls and ceilings and artificial lights, she absolutely loved it, saying, ‘More!’ when it was time to go back in.
The medical team thought she was going well enough, all things considered, that we might be allowed to bring her home for the night soon. But her bedroom was at the end of a long hall from our room. Even apart from the fact that it had become the grandmothers’ room, the location wouldn’t work at all: we needed to be able to hear her. So Dad and my cousin Peter came to our house and spent a day putting up a wall to section off part of the living room and create a new bedroom for Mia. We put a cot in there for her as well as a single bed for an adult to rest in while they kept an eye on her.
Before the diagnosis we had been on the point of starting a major building project, tearing down our existing house and rebuilding on the same spot. (While the house wasn’t the right size or layout for our needs, we really liked the position and the neighbourhood and had bought with this plan in mind.) But that was all on indefinite hold.
I was fortunate in that even though I wasn’t playing, I remained on a Cricket Australia (CA) contract. It followed the usual arrangement of a salary-like base ‘retainer’, supplemented by match payments. Mine was a two-year contract which ran until June 2013. CA were absolutely great from the moment they learned what was happening. James Sutherland, the CEO, and Pat Howard, the General Manager of Team Performance, reached out to me personally with their kind thoughts and best wishes. They didn’t even mention money; the monthly retainer payments just kept coming, even though at that point I didn’t know when, or even if, I would be able to play again. In fact, throughout the whole experience they never put any pressure on me about cricket but were only concerned about my family’s wellbeing.
The continuation of the retainer took some of the load off my shoulders, but my income dropped enormously without match fees. As well, one of my sponsors triggered a clause in my contract with them whereby they didn’t have to honour our agreement because of the length of time since I’d played. We could get by financially for a little while this way, but not indefinitely. Until your life is turned upside down by a life-threatening illness in the family, you just don’t realise how the effects can ripple outwards. Before Mia got sick, I pictured childhood cancer in terms of its physical and emotional impacts, not the financial ones. However, for some people being unable to work leads to the loss of their homes and life savings. We were lucky to have a safety cushion, but even if the rebuild had been logistically feasible now — which it obviously wasn’t — there was no way we could have committed to it financially. Like pretty much everything else not to do with Mia’s fight, it would just have to wait.
A week after our venture into the hospital grounds we were given our first ‘gate pass’ — approval to go home for a little while, in this case two hours on a Saturday. Karina and Zac were looking forward to it, but I felt very anxious. We all knew how quickly Mia could crash — was this really such a good idea? Dr Santosh and the nurses reassured us we’d be fine and said it was a good way to start preparing for when Mia came home as an outpatient. This was likely to be within days if things went well following the stem-cell extraction she was due to have the following week. Although Mia had started eating again and had been weaned off the TPN, she was still vomiting a lot and so was receiving additional nutrition via her NG tube. For such a short visit, we wouldn’t need to know how to do this, but we did have to be trained in administering medication through the tube, and Karina took on this task. It was a delicate and involved procedure, and I was relieved that she seemed so on top of it all.
Mia got very excited when, waiting in her pram out the front of the hospital with Karina, she saw me pull up in the car and realised she really was going home for a visit. She coped fine with the trip and loved looking around her new room and the gifts and toys waiting for her. She also really enjoyed being home with Zac and it was so nice to see them interacting normally — even their bickering over what DVD to watch was quite heart-warming, for a while.
But I was on edge the whole time in case something went wrong. We decided to give her a relaxing bath to get rid of that ‘hospital feeling’, but it turned out to be a very stressful process. We had to make sure her central line didn’t get wet, for fear of infection, so the tubes had to be looped up into a special pouch around her neck and we had to stop her splashing. Two hours at home was definitely long enough. By the end of it she was exhausted and so were we. The stimulation did her a lot of good though — I stayed with her that night at the hospital and for almost the first time she slept through solidly, and as a consequence so did I. The following day we did it all again, only this time the pass was for three hours.
A very important event was scheduled for the following day, 23 April: the extraction of her stem-cell–rich bone marrow. Stem cells are amazing things. They’re like molten metal in a foundry: they have the potential to turn into whatever is needed most. They can become brain cells, muscle cells, red blood cells and more. They would be put back into Mia’s body during the bone marrow transplant (BMT) stage of her treatment following chemo and surgery. The BMT team had a minimum amount of cells they needed to harvest and if they didn’t get it they wouldn’t be able to go ahead with the transplant. They’d only know once they had extracted the marrow and analysed it. The machine was hooked up to her central line and she could not move from her cot for well over five hours. There were huge smiles all round when the team told us her marrow had been hea
lthy enough to deliver six times the minimum amount.
The next day, after she had been assessed and we’d been briefed by the oncology, orthopaedic and nutrition teams, and after Karina had proved to their satisfaction that she could handle all aspects of the ‘enteral feeds’ through the NG tube, we were sent home for five days. With us went a detailed timetable of all the medications that had to be given throughout the day and night, as well as the schedule for the feeds.
Again, it was lovely for Mia to be out of the hospital environment, but caring for her was exhausting and when we finally did get her and Zac into bed, no-one got a decent sleep. Either her alarm buzzer was going off to indicate one of her lines had become blocked, which often happened as she moved around in bed, or Zac was up asking for water at 1 a.m., or Mia was sitting up at 3 a.m. demanding the iPad. We’d been told to call straight away if her temperature rose to 38°C and we didn’t even make it to the end of the fifth day before that happened. They told us to come straight into Emergency, where she was put on intravenous fluids and antibiotics, just to be safe. They kept her in for the scheduled week-long stay at the beginning of the next round of chemo, her third, but then sent her home for the three-week recovery period.
I anxiously wondered how we would cope, but it got fractionally easier, or at least we got more used to what it entailed. However, the night-time disruptions continued and it wasn’t until mid-May that both Karina and I got three hours’ sleep in a row. The reason I know is because it was noteworthy enough for Karina to mention it in her diary. It was also at this point that we got the results from the first scans since chemotherapy began, the first indication of whether it was working. Dr Luce came and found us and said animatedly, ‘There has been a significant reduction in the size of the tumour. A significant reduction!’ I think he repeated it because he didn’t quite see the reaction he was expecting. Of course we were relieved and happy to hear this news, but even after everything that had occurred, after everything we’d been told, we were still thinking, Well, that’s what’s supposed to happen, right? Chemo is supposed to do that. It was only later on when we met and became close to other parents whose children’s tumours didn’t respond that we fully understood how differently that conversation could have gone.