My Family's Keeper

by Brad Haddin

  When she had gone I stood by Mia’s cot, stroking her head, and took in the room for the first time. Like the rest of the Camperdown oncology ward it had been painted and decorated with purples and yellows and other bright colours to make it as child-friendly as a hospital could be. This room had a light-hearted police theme with flashing lights the kids could activate and lots of murals. The ward catered for children aged anywhere from tiny babies to 16-yearolds. They often spent long stretches in here and they almost always had an adult with them, so the rooms were set up to accommodate that. At the moment Mia was in a single room but there were also shared wards. Either way, a fold-out bed was provided for each child’s parent or carer. Before she left, Karina had explained the set-up: what looked by day like a comfortable low armchair folded out to become a bed, and linen and pillows were provided. Given that there wasn’t a lot of space to begin with, the staff asked that you had it all folded up by 9 a.m. each day so the nurses and doctors could move around freely.

  The room had an ensuite toilet that normally was for the patient’s use only, but which in our case they kindly allowed Karina to use, given her advanced pregnancy. There was a small fridge in the room where we could keep food, and another shared one in the parents’ lounge. There was a tea room where you could help yourself to a cuppa and a biscuit and even, if needed in the long night hours, find something to eat in the freezer stocked by a wonderful charity called Cure Our Kids.

  Even though I was exhausted, it was hard to sleep, despite the fact that Mia was now resting peacefully. I did eventually nod off, although I woke each time the nurses came in to do their observations by torchlight. In the morning, despite seeming to have slept quite well, Mia woke up tired. Her tummy also looked even larger to me. She was having daily blood tests and the first one I was there for was hard to watch. It took four attempts for them to find a vein that worked and the poor baby got very upset.

  During the morning her heart rate started racing and her blood pressure reading was low, which concerned the doctors. They gave her something for the pain she was obviously in, but said that for the moment they wanted to just keep an eye on the heart rate. Again, I found it hard to understand that some kind of immediate action wasn’t being taken, but Karina, who had come back to the hospital, bringing Zac with her, reassured me that observation is often the best approach to start with.

  I handed over to Karina and took Zac home for a few hours. Zac always felt my absence acutely when I was away on tour and he was extremely excited to have me back home. It was such an innocent excitement — he was simply too young to understand what was going on with Mia — and on the one hand it was beautiful to see him bouncing around in all his lively, three-year-old good health, but on the other it made the contrast with Mia’s current state all the more painful. Emotions were running high. My brother Michael called from his home in the United Arab Emirates (UAE), where he runs a really successful fitness company. When Mum had first called him with the news, while I was still in the West Indies, he’d thought he could get by with just daily phone updates. But he was ringing to say he couldn’t stand to be away from the family at such a time — he, his wife Amy and their daughter Molly, the same age as Mia, were jumping on a plane and would arrive later that night. Knowing how busy he was running his business over there in Abu Dhabi I would never have asked him to come, but I was very glad he had decided to.

  Happy to have been able to spend some time with Zac, I left him in the capable hands of Karina’s mother, Marg, and returned to the hospital. I stayed there for the afternoon and evening before reluctantly saying goodbye to Mia and Karina and heading back home again about 8 p.m. The idea had been that I would get a decent sleep then be back out at Westmead again the following morning in plenty of time for the procedures Mia had scheduled, including the CT scan. But things didn’t quite go to plan. I went to bed all right but I tossed and turned, my mind racing. I finally gave it up as a bad joke in the early hours. The hospital asked that only one adult stay overnight, but I needed to be there with my girl. So I got dressed as quietly as possible, crept out of the house, trying not to wake Zac and Marg, got in my car and drove to the Westmead car park. My intention had been to stay in the car, dozing if I could, until daylight and then go into the ward. But I just couldn’t take not knowing what was happening and at 3.30 a.m. I texted Karina to let her know where I was.

  Karina was awake because Mia was having a rough night with worrying symptoms. Her heart rate had continued to have alarming spikes, hitting 175 beats per minute at some stages. Her temperature was also too high and she was clearly in discomfort. Paracetamol had given her temporary relief and when I texted she was having yet another blood sample taken. I waited until that was all done and went in about 4 a.m. By that point Mia was sitting up in her cot happily watching In the Night Garden on a portable DVD player — you’d never have guessed the night she’d had. Karina got no sleep at all, but Mia nodded off for a couple of hours between 6 a.m. and 8 a.m., when one of Dr Luce’s team came in to say that the blood test had shown her haemoglobin was down, which is why her cheeks were once again pale. The level wasn’t as bad as it had been when she was admitted, but it was low enough to warrant another blood transfusion.

  Dr Luce Dalla-Pozza came to see us himself a little later. I immediately saw what Karina had meant about his caring, compassionate manner and calm professionalism. He explained to me what he had previously told Karina about the types of cancer Mia might have, he spoke reassuringly about the depth of experience the hospital’s staff had in treating children’s cancer and he outlined the procedures she would be having that afternoon. There was a lot to absorb, although he made it all as simple as possible. But one thing he said stood out so clearly that I will never forget it as long as I live. He said, ‘You have a child with cancer. You’re no longer a normal family. There’s no such thing as a “normal day” anymore.’ His words echoed in my head long after he had left.

  The second transfusion, which brought Mia’s rosy cheeks back yet again, was finished well before her 2 p.m. CT scan. For kids who are too young to understand they have to lie perfectly still, scans like this are done under general anaesthetic, and while Mia was under they were going to do several other procedures, to help with diagnosis and to tailor her treatment. The state of bone marrow can tell doctors a lot about whether cancer is spreading through the body and how much damage it is doing. Mia would have two kinds of bone marrow samples taken: an ‘aspiration’ of the cells, which means they suck up some of the marrow into a syringe, and a core biopsy, which means they punch out a 1cm or so section of the marrow in a single piece. In Mia’s case they took the core biopsy from the top of her pelvis. They have to push through the bone to get to the marrow, and it can feel sore for days afterwards, but, under a general anaesthetic, at least Mia wouldn’t feel any pain while it was being done.

  The doctors were also going to do a biopsy of the tumour itself. This would give the answer to what kind of cancer it was — a Wilms tumour or the feared neuroblastoma. They do this by using ultrasound to position a hollow needle, into which they then pull tissue. All of this would be done in Radiology. Then Mia would be taken to the operating theatre where they were going to insert something called a central line — a thin tube that went in under the skin and was fed into one of the veins that goes down near the heart. It’s used to supply drugs, fluids and even nutrients, and to take blood samples without the painful repeated attempts Mia had previously gone through as they tried to find a vein in her hands and arms. One end of the tube is left outside the body, on the chest, and when it’s not having something injected into it or blood extracted from it, it’s kept capped and covered with a dressing.

  It was confronting to think of such a little girl needing to have so many things done to her before the actual treatment even started. Again I heard Dr Luce’s words. Normally, Mia would have spent the day playing with her friends from Karina’s mothers’ group or visiting a local park, but there was no point
thinking about ‘normal’. We were on a fast-moving train, with no option to turn back. Instead of pushing her on the swings or catching her as she came down the slide, Karina and I were walking beside Mia as she was wheeled in a cot down to a radiology suite for the two-hour procedure.

  One of the medicos in Dr Luce’s team, Oncology Fellow Dr Santosh Valvi, came in to see us a few hours after it was all done. Karina had met him soon after Mia’s admission, when he told her she’d need to remember his name because he’d be coming in to check on Mia as many as four times a day in these early stages of treatment. He hadn’t been exaggerating. Dr Santosh explained that he didn’t yet have any results to give us; the samples were being analysed but it would be at least 24 hours before we had any findings. In the meantime they were going to perform another, different scan the following day, an MIBG. Apparently CT scans, like the one Mia had already had, are a kind of sophisticated X-ray, good at showing what’s going on in soft tissues, including organs. An MIBG scan, performed in the nuclear medicine department, uses a radioactive liquid in the search for a couple of really specific cancers, including neuroblastoma. MIBG is actually shorthand for the name of the liquid — iodine-123-meta-iodobenzylguanidine. It’s put into the body on one day, and on the next day it can be picked up on a special kind of camera.

  The MIBG is injected into a vein, but in order to protect the thyroid from being damaged by it the patient has to swallow a special kind of iodine, so we had to get Mia to drink this mixed into milk each day for four days before and three days after the scan. It has a reputation for tasting disgusting and judging by her reaction the reputation is spot on. But as horrible as it must have been, she got it down. One thing that stood out about Mia right from the start of those first few days in hospital all the way through her treatment was how incredibly compliant she was and how she would do just about whatever was asked of her, no matter how hard it was.

  I left in the evening to go home and see Zac. Once again the plan was that I would come back the following morning, but again I just couldn’t sleep and couldn’t bear being away, so I was back in Mia’s room before 5 a.m. on the Tuesday. Despite my restlessness I felt the first real surge of optimism I’d had since Karina’s initial phone call. I said to her as soon as I arrived, ‘Whatever results we get from the scan, she can be cured.’

  That good feeling lasted only a few hours as by early afternoon Mia was once again running a fever and her heart rate had shot up to 180. She’d been sleepy all morning but now she wasn’t moving at all. The nurse checking her vital signs hit the button for the emergency response team, bringing six doctors hurrying to her side. They had various theories about what might be causing her to deteriorate and none of them sounded good. The two that I grasped were that she might have a collapsed lung as a result of the general anaesthetic and that she might have developed an infection from the central line. It was a foreign object inside the body so this was always a possibility. They investigated a bit further and realised that there was a tiny hole in part of the central line. (I hadn’t realised, but it wasn’t just a single hollow tube but was split into separate channels. One of these had somehow — no-one knew how — become damaged.) They had to fix it then and there, not under another general, and it was really, really upsetting to watch as one young doctor tried and failed before handing over to a senior colleague.

  I thought that had been tough, but the day got much worse when Drs Luce and Santosh came to see Karina and me to tell us what they knew so far. All the signs were that Mia had neuroblastoma, not a Wilms tumour. It was so hard to take in anything after that, but these two kind doctors were used to parents reeling in the face of terrible news and they took it slowly and gently, breaking it down into chunks of information we could understand. Even so, I’m not sure I would have retained anything very much, but fortunately Karina took diary notes that we could check later as we started to absorb the information.

  They told us that neuroblastoma was rare: there were only about 40 cases diagnosed a year in Australia. Dr Luce sees about 14 cases a year, which was some kind of comfort. We learned that there were four different categories, depending on the age of the child at diagnosis, how far the cancer had spread around the body, what a microscopic analysis (a ‘histology’) of the tumour showed, and whether or not it had extra copies of a particular MYCN gene — having that put you into the category with the lowest survival rates. I knew about human beings having genes but didn’t really understand how a tumour could have them. It didn’t make sense. I was drowning in all this information, but thankfully Karina looked like she understood most if not all of it. There was just one bit of good news: the bone marrow sample that had been aspirated was clear. But it would still be two more days before the results of the tumour and marrow core biopsies came through. In the meantime, the following day’s MIGB scan would tell us a lot more.

  When the meeting was over, Karina and I couldn’t do much more than look at each other. We reminded ourselves that there was plenty we still had to find out and it was important not to jump to conclusions. We had to stay strong for Mia and deal with whatever came next. But we were both still feeling shaky when Karina went home to spend the night with Zac, and she told me later she cried herself to sleep. I don’t think I got any shut-eye at all.

  The following morning Mia’s heart rate and blood pressure were both up and her distorted stomach had grown 1.5 centimetres larger in just 24 hours. She was sedated for an hour and a half for the MIGB procedure and Karina stayed with her while I went home to collect Zac. He had been to the hospital for two brief visits since Mia had been admitted, but he hadn’t liked it much. From a three-and-a-half-year-old’s perspective, hospitals are challenging places at the best of times — people are always telling you not to run and not to yell and not to open things. And despite all the efforts to make the Camperdown ward child-friendly, seeing Mia hooked up to tubes and monitors and so clearly unwell upset him.

  Previously, Marg and Danielle had brought Zac in, giving him just a little time in Mia’s room before a chance to burn off some steam either in the playground outside or in the Starlight Express Room. This is a place where the kids being treated and their brothers and sisters can go to play video games or do some craft or just unwind. To help them relax as much as possible, it’s officially a ‘doctor-free zone’. But this time we didn’t have to take Zac out of Mia’s room to be entertained because, with Mia recovered from her sedation, the Clown Doctors made a visit.

  You’ve probably seen the Clown Doctors on TV. They’re performers who dress up in white coats and red noses and silly wigs and face-paint and go by names like Dr Silly Billy and Dr Colourfool. Their whole job is to go around cheering up sick kids and they do it brilliantly. Depending on the age of the child, they might tell jokes or play silly tunes on a ukulele or do what they did for Mia, which was to sing songs and blow lots of bubbles. She was entranced by that initial visit and Zac was too, and it was wonderful to see them laughing as if everything was normal. I did, however, see Karina discreetly wipe away a tear at one point and I understood her feelings perfectly — this was not a scene from a TV show or a fundraising brochure; this was real, we were here, and it was our baby girl they were visiting.

  The following hours passed in a jumble of visits. First came my brother Chris and his then girlfriend (now wife), Jenna; then Michael, who came straight from the airport; then Mum and Dad, who took Zac home with them when they went. There was someone from the Cure Our Kids charity (these days visits are from Redkite) bringing a care basket of toiletries, vouchers for the car park and the hospital’s cafes, and little toys. In between there were nurses coming in to check on Mia and take observations. It all made my head spin.

  We’d been told that Karina, being pregnant, shouldn’t pick Mia up after the MIBG because she would still be ‘radioactive’ until the nuclear-medicine solution had passed from her body. But when our little girl got tired or distressed or when she vomited, as she did a lot during the days following t
he scan, and I wasn’t immediately on hand, Karina couldn’t help herself and I don’t blame her one bit. How could you not pick up your child and comfort her? How could Mia possibly understand that in order to find out about her disease we had to pump chemicals into her that were so dangerous they might pass from her body into ours? All we could do was what we’d done all her life — cuddle her and stroke her and reassure her everything would be okay, even though we had no idea whether that was true or not.

  When everyone had left and Mia was resting, Dr Luce came by to tell us the results of the MIGB scan. It was the news we’d been dreading: Mia did have neuroblastoma. Even though he and Dr Santosh had said the signs were pointing that way, we had hoped against hope that it would turn out to be something else. The space that hope had been occupying inside my chest emptied with every sentence Dr Luce spoke. A sick, cold feeling came over me as the news got even worse.

  Not only did Mia have this dreaded form of cancer, the scan showed it had spread to different parts of her body (‘metastasised’ is the technical term). The tumour wasn’t content to surround her kidney, shove her liver out of place and push her aorta, the body’s main artery, sideways; it wanted even more of her and had sent cancer cells to set up colonies. It was in her shoulders, knees, hips and leg bones. That’s why she had stopped wanting to walk and had lifted her arms out to Karina to be carried every time she had to climb stairs. As well as the big mass inside her making it hard for her to breathe and eat and get comfortable, the cancer in her bones had made them tender and sore.

  It was a grade 4 tumour. There is no grade 5. This was the most advanced stage with the lowest survival rate. Dr Luce tried his best to comfort us, telling us it was all too easy to focus on the negative side of the survival rates and overlook the children who were successfully treated. In fact he urged us not to torture ourselves by going online to look up survival rates or other families’ experiences but instead to keep our focus firmly on Mia. He said there were clear protocols for treatment, and a plan to follow that gave her the best possible chance. He also said there was one more piece of the puzzle to come — whether the tumour had the MYCN gene or not. We wouldn’t know that until the following day.