My Family's Keeper

by Brad Haddin

  When he’d gone I phoned my parents to tell them what was happening. They hadn’t even made it back to their place yet, having stopped at the home of my cousin Peter and his wife, Michelle, who live a few minutes away from them in Queanbeyan and with whom we’re all really close. They were having a bite to eat when I rang but their immediate response was, ‘We’re on our way.’ They got straight in the car to drive more than three and a half hours back to Westmead.

  Mia was still sleeping when she was taken down to Radiology for the embolisation. Karina and I walked beside her cot as it was being wheeled along. We turned a corner and I stepped back to let the cot get around. As I did so I saw a couple of players from the Parramatta Eels rugby league team who I knew a little. They were at the hospital on a goodwill visit, just like the kind I’d made many times before. They assumed I was there for the same reason. They said hello and, knowing my connection with the ACT, started chatting to me about the Canberra Raiders. I made a response then indicated Mia and said, ‘I’m here with my daughter.’ Looking shocked and concerned as they took it all in, they wished us well and stepped aside. The gulf between us felt a mile wide.

  At 7.30 p.m., with Mia in having the procedure, Karina and I went back up to the Camperdown ward, where we waited and waited. The minutes crawled by. It was after 11 p.m. when Dr Lord appeared to tell us how it had gone. He had none of Dr Luce’s warm manner but projected aloof self-assurance and ate from a packet of barbecue-flavoured chips as he spoke. He said, ‘It went well, I’m really happy.’ Munch, munch. ‘I couldn’t find the site of the bleeding but I embolised all the vessels leading into the tumour, while hopefully keeping the gates open on the blood vessels that supply the kidney.’ Munch, munch. ‘So I think I may have stopped the bleeding and hopefully she improves from here. Any questions?’ I said, ‘No, you’re the expert. If you’re happy, we’re happy.’ He gave us a farewell nod and walked out, still munching away.

  Mia was in the Paediatric Intensive Care Unit (PICU). Two parents or carers were allowed in at a time (though only to sit with the child, not to sleep there), but it was definitely not a good idea for me to be there when I wasn’t completely healthy, so Karina went in alone. Mia was still out of it, lying flat on her back, and Karina said her tummy looked bigger than ever. She had two tubes in her nose: one carrying oxygen to help her breathe and a nasogastric (NG) tube running down the back of her throat to deliver much-needed nutrients in the form of liquid straight to her stomach.

  Not until the following Monday, five days later, were we able to appreciate what an incredible thing had happened. One of the surgical team saw Karina in a corridor and said, ‘Dr Lord did an amazing job saving Mia’s life the other night.’ Karina started to nod then said, ‘Hang on, sorry, what do you mean?’ The surgeon, Dr Tori Lawrence, said, ‘Oh, if he hadn’t been able to stop the bleeding the way he did, Mia wouldn’t have survived the night. Going into the procedure we feared she was gone. He did an absolutely amazing job.’

  When Karina told me about the conversation I felt my knees almost buckle and I could see it had hit her just as hard. I was relaying what the surgeon had said to Dad when it suddenly came to me: Oh my god, that’s what Dr Luce was saying. He was warning us we were right on the point of losing our little girl. I started to say to Dad, ‘Do you remember that conversation in that room with . . .’ but before I got out any more he said, ‘Yes, he was telling us that . . .’ We finished the sentence at the same time, in the same shocked tone: ‘Mia was going to die.’

  (We finally got the chance to personally give our thanks to Dr Lord almost four months later, when Karina passed the miracle-worker in a corridor. Thinking she recognised him, but not a hundred per cent sure since he was in a suit and looked very different to when we’d last seen him, all kitted out in his theatre scrubs, she said, ‘Dr Lord?’ He stopped and said, ‘Yes?’ She said, ‘My daughter, Mia Haddin, you saved her life.’ He said, ‘Yes.’ Karina said, ‘Thank you.’ He gave her a friendly pat on the shoulder and kept walking. Who knows how many lives he had saved since we had seen him last? That level of skill was literally all in a day’s work for him, taking place in a public hospital where anyone who needed his help gets it. It’s mind-blowing.)

  After the operation, Mia remained in PICU where she had one-on-one nursing. Her stomach was slightly larger than it had been the day before but all the other signs were very positive: her haemoglobin remained steady and her temperature didn’t fluctuate as much. Encouraged by Mia’s nurse, Karina went down to the Camperdown ward to get some sleep, while I remained nearby in the parked car. I was very relieved when she called first thing in the morning from PICU to tell me that Mia was half sitting up in her cot and looking much better.

  The previous day Drs Luce and Santosh had explained the course of the treatment they planned to give Mia to try to cure the neuroblastoma. They outlined the risks and potential side-effects of each element of the treatment, the outcomes they hoped to get at each stage and how they could tell if it was all working. It would begin with intensive chemotherapy. Partway through the chemo, some of Mia’s stem cells would be extracted via her central line and stored. All being well, following chemo she would have major abdominal surgery to remove the tumour.

  When she had recovered sufficiently she would have one more cycle of chemo — an extremely high dose to kill off any remaining cancer cells (and inevitably many of her precious good cells too, making this a particularly dangerous stage of the treatment). Then her own stem cells would be put back into her body in a bone marrow transplant. Following that she would have radiation therapy and finally a very painful treatment called immunotherapy. In all, the process would take 14 months. But she wouldn’t have to stay in Westmead that whole time. Certain treatments required hospital stays (for instance, five-day blocks during each chemo cycle, and six weeks in isolation after the bone marrow transplant) but in between she could come home and be treated as an outpatient.

  The information they gave us was a huge amount to absorb. I felt like I was being pumped so full I had no chance of taking in the details. I’d be relying on Karina to explain it to me as we went along. But Drs Luce and Santosh outlined everything patiently and clearly, and they welcomed our questions. The first question Karina and I had was why had it taken seven days to get a diagnosis? The tumour was growing the whole time and Mia had become much worse over the week since she’d been admitted, so why hadn’t they just got her on the operating table and cut the thing out? The doctors explained that surgery to remove the tumour still wasn’t an option because it was so large and was intertwined with her right kidney and adrenal gland as well as blood vessels. One of the main aims of the chemo was to shrink it enough so that it could be taken out surgically. The other was to kill off the cancer cells that had spread to different parts of the body.

  Karina then asked about something that I knew was causing her a lot of anguish. She said, ‘Looking back, we think Mia was showing symptoms as long ago as January. Would she have been all right if I’d brought her in back then? Would that have prevented this?’ In his kind but straightforward manner Dr Luce said, ‘You can’t let yourself think that way. You couldn’t have been expected to know what was going on. You’ve got to draw a line, accept that you did your best for Mia then and you’re doing your best for her now. You need to focus on what lies ahead and you can’t do that if you’re trying to rewrite the past.’ That was a big thing to do but we could both see that it made sense. Dr Luce then added something that really helped us let go of the dark fear that we had failed Mia by not seeing what was going on sooner. He told us that this particular type of tumour would either respond to chemo or it wouldn’t, regardless of its size. He added that they would know quite quickly which way it was going to go.

  I asked what might have caused the cancer. I was wondering if there was something we could have done to prevent it, but I was also thinking about Zac and the baby growing in Karina’s belly and whether they were at risk. Drs Luce and Santosh e
xplained that so much about neuroblastomas is still unknown. A great deal of research is being done to try and figure out if the tumour is somehow triggered by a faulty gene that the person is born with. There’s also lots of work underway to try to improve treatments. But progress has been incredibly slow compared to some other childhood cancers, including particular forms of leukaemia, for which survival rates are now very high. Dr Luce did, however, say that it was very unlikely that the other two children would develop it.

  The treatment protocol they were going to give Mia was being used in other countries including France and Germany. It was very clearly laid out and they would be following it precisely, but it was also still being refined. Data from every child who received this treatment went back into a central database. Researchers could then see what kinds of side-effects were associated with what doses and adjust the protocols, improving things for kids who came after. They were also able to keep track of how many children’s lives were saved and in how many the cancer had returned.

  Dr Luce and his team were always careful not to state anything as an absolute certainty, so as not to make people lose hope: parents are much better able to help their kids through treatment if they can cling to optimism instead of giving way to despair. So when they talked to us about relapse they phrased it very carefully. Even so, what we learned was chilling. Basically, if everything worked just as it should do and Mia was cleared of cancer, she still wouldn’t be out of the woods. That’s true of anyone with the disease — if, after treatment, you are cancer-free, the doctors don’t say you’re cured; they say you’re ‘in remission’. This period begins when all the treatment is complete and it lasts for the following five years. The concern is that during that time you might relapse. If the cancer does come back, they again try to get rid of it. But with Mia’s particular type of neuroblastoma the first two years after treatment were critical. Research showed that if a child relapsed within this period there was very little chance of a cure.

  We needed to get a sense of the big picture at the start of the process, but Dr Luce urged us to always keep our focus on whichever stage of treatment Mia was having rather than trying to predict an outcome we couldn’t control. As he knew very well, the lack of control is one of the hardest things to accept when you find yourself in the position we were in. As a parent, you want to protect your kids and do everything you can to give them the best possible chance in life. But when your child has a life-threatening illness, there is nothing you can do. Karina, me, her parents, my parents — every single one of us would have taken Mia’s illness on ourselves if we’d been able to spare her. But we couldn’t.

  Instead, we had to place our trust in strangers. Admittedly, these were people who were at the top of their field, but still, they were people we had barely met. Looking back on it now, I can see that part of the reason I trusted them was that they were such a cohesive team. Teamwork has been the heart of my whole life in sport and I know good teamwork when I see it. I could sense immediately that Dr Luce and his team were a tight group who worked well together. Whether that would be enough, only time would tell. We had no choice but to let go and put our faith in them.

  That meant following Dr Luce’s advice to take it all step by step, and the first step was chemo. Even though less than 24 hours had passed since Dr Lord had performed the embolisation, Mia had improved so much they were going to start chemo that very day, 23 March 2012, right there in intensive care.

  Karina called me and, wearing a surgical mask, I came up from the car park for the formal briefing and permission process. Dr Santosh and Oncology Clinical Nurse Consultants Erin Sheehan and Virginia Greene explained that Mia would have six rounds of chemo, each one running for almost four weeks. They would do a scan after the first two rounds. That would tell them if the chemo was working — if it was, the tumour would have shrunk. Mia would then have three more chemo cycles and more scans, after which they would operate.

  When they felt she’d recovered enough from surgery, the final cycle would begin. She would only need to stay in hospital until she had recovered from the surgery, probably for a week or so, and then we could take her home. She would be an outpatient for most of the final chemo cycle before being readmitted for the bone marrow transplant stage. That was the plan, anyway.

  The chemo would be delivered in two-day blocks, with each block involving a different combination of drugs (and different likely side-effects for each block). But the overall pattern remained the same: four days of receiving the drugs intravenously (along with lots of fluids to flush them through the system), followed by a three-week break. During this time Mia’s platelets (or clotting cells) and her white blood cells (including neutrophils) would fall to almost nothing, thanks to the chemo, then gradually build back up just in time for the next hit.

  I didn’t get it. White blood cells are the ones that fight infection, right? So why kill them off? Dr Santosh explained it’s an unfortunate side-effect of the fact that chemo is designed to specifically target the cells in your body that divide fast, like cancer cells. Unfortunately, white blood cells are also in that category. They are collateral damage. So people on chemo lose their immunity and become vulnerable to every passing bug. It’s even worse if they’re young children, since the drugs also erase the immunity they’ve gained from normal childhood vaccinations for things like diphtheria and measles. The awful truth, we learned, was that it might not be the cancer that would kill Mia; it might be the treatment.

  The hard news kept coming. The type of chemo Mia was getting and her young age meant that if she did make it through she was likely to be left with a bunch of very serious side-effects. Permanent hearing loss, damage to the heart, slower cognitive processing and problems with puberty and reproduction were the ones I took in. Those things all sounded bad, but we’d just have to face them if and when they happened. As it was, we would consider ourselves blessed to get Mia to her second birthday, never mind to puberty and beyond.

  Again, the amount of information was overwhelming, but Dr Santosh and Erin broke it all down in a way we could understand and when it was time for us to sign the consent forms we were as well informed as we could possibly be. They gave us a handbook that covered everything they’d told us, a treatment diary and a textbook on childhood cancers that answered any other question we might think up. Any question except the unanswerable one: will this save our little girl’s life?

  Even at this point we didn’t fully appreciate what we were up against — we hadn’t seen the tumour. It had never occurred to me to look at a scan because I wouldn’t have been able to make head or tail of it anyway, but Karina leapt at the chance. Through her work she had seen many, many tumours and she’d been expecting Mia’s to be maybe the size of an apricot. The reality shocked her so much she struggled for the words to describe it to me. The tumour was enormous, taking up the majority of the right side of Mia’s abdominal cavity. Karina had never seen anything like it.

  Over the next few days I felt even more helpless than I already had. I was still crook with the throat infection, which meant that I couldn’t do the one thing I wanted to — go into PICU and take my turn sitting with Mia as she started chemo. Instead, Karina, Marg and my mum took it in shifts.

  Chemo drugs are toxic — that’s how they kill cancer cells — and that means there are tons of precautions around them, as we’d learned in the briefing. Any item that has anything to do with the drugs is identified in purple: the nurses who administer it wear purple gowns and gloves, the bags and bins for contaminated chemo waste are purple, the warning signs are purple. This is so no-one forgets the danger and becomes careless at any time, because even after the drugs have been administered, they stay in the patient’s bodily fluids for up to a week following the treatment. We’d been warned that we had to be careful not to let any of Mia’s fluids touch our skin; however, in one of her phone calls to me, Karina told me that was just impossible. When I was well enough to return to the hospital room, a few days after Mi
a’s first treatment, I could see what she meant.

  The drugs made Mia vomit and gave her diarrhoea, so there were lots of clean-ups and the nurses couldn’t do all of them. We were supposed to put on a gown and gloves to wipe her down when she got sweaty with fevers or even to dry her tears. But the number one thing we all wanted to do was to make her a bit more comfortable. How could you expect such a tiny child to understand she would just have to wait while you put on a whole load of gear? You couldn’t. So often the best we could do was to quickly grab a pair of gloves. I did worry about this at first, especially for Karina with the unborn baby, but she was totally pragmatic about things. Her view was that we should be careful and follow procedure as much as possible, but that Mia’s needs came first.

  What was happening to Mia had hit Karina just as hard as it did me, but she adapted exceptionally quickly. Even the staff commented on it. After we’d been there a while, one of the senior nurses looked back on those early days and said that while I was like a deer in headlights for ages, as most parents are in this situation, Karina somehow managed to absorb it all and get completely into the rhythm of our new reality. In fact, by the time Mia started chemo Karina was not just maintaining her diary, she was also keeping track of events by taking photos with her phone-camera all through the day.

  It’s not something that would have occurred to me to do in a million years. But Karina has always loved taking pictures; she does it all the time. She organises the photos and makes up albums to mark special occasions. I was used to her doing it, but why on earth would we want photographs of Mia looking desperately sick? Karina, however, took this amazing long view. She said, ‘This whole 14 months is going to go by really quickly. If we don’t record it now, we’ll look back and it will all be a blur and if Mia later asks us what happened in detail we won’t be able to tell her.’