by Susan Biggar
‘What do you mean?’
‘I don’t know … the TV was right in front of him but he was saying that he couldn’t see it. He just started getting really vague. John said it was hypoxia—lack of oxygen to the brain.’
‘What was the MET call thing like?’ I ask though I’m not sure I want to hear.
‘It was terrifying. John came in and said “Look, just to warn you, the room is going to fill up with people really quickly.” Then, like ten seconds later, there were literally a dozen people in there all rushing around, ripping open packets of drugs, starting an IV, monitoring him.’ He stops speaking, as if to recover.
‘I wish you had called me—I wish I’d known.’
‘I didn’t want to leave him and the phone in his room doesn’t allow you to call out.’
Our conversation is interrupted by the arrival of the Clown Doctors. I don’t know who called them or if it’s just chance, but they are just what we need. There are two clowns. One’s wearing huge plastic shoes, an orange wig and a bright red nose, plus his white doctor coat and fake stethoscope. The other one is playing the ukulele and pretending to pick his nose. They head straight for our corner of ICU. Ellis, at three months old, is asleep in the stroller but Aidan and Oliver have their eyes latched on this kooky couple. The repertoire is fantastic, including plenty of burp and fart jokes just right for the audience.
We’re all enjoying the entertainment but when the clowns pull out bubbles and begin to blow them all around Oliver’s bed I get apprehensive. I’m certain the nurses will be angry about this—it’s ICU, for heaven’s sake. In France, bubbles wouldn’t have been allowed in the parking lot. I look around and notice several nurses smiling in our direction. Amazingly, they seem to be accepting this potential breach of regulations. In fact, one of them comes over a few minutes later and suggests the clowns do a particular trick. Darryl and I look at each other and shake our heads, in astonishment. Are we on another planet?
Oliver improves through the day and late that evening he is moved back up to the ward. That night at home I phone my parents and Raewyn to explain the events of the day. Although I try, it’s impossible to hold back the tears. I can feel a cloak of despair settling over me. It’s more than just Oliver being in the hospital again. All of the hope and optimism associated with a new country, a better climate, excellent healthcare—what’s the point if he’s in the hospital already after just two months? Were we kidding ourselves thinking that Australia would be the place to beat CF? Maybe it’s too fierce an enemy after all.
This is the saddest Christmas I can remember. After Aidan and Ellis are in bed I wrap presents until late—tears dripping on the gold and silver wrapping paper—while snacking on the biscuits and carrots Aidan has laid out on the table for Santa and the reindeer. First thing in the morning we load the presents in the car, I dress Ellis and we drive to the hospital.
We’re all reunited on the ward by eight o’clock and thrilled with what we find. Oliver has colour back in his face, is off the oxygen and swamped by a stack of new toys. Apparently he awoke to an overflowing Santa-sack on his bed: a Thomas the Tank Engine game, Bob the Builder book, a grunting toy chainsaw—from someone, somewhere in this clunky old building. Later that morning we hear sirens and look out the window to see several fire trucks roaring up to the hospital. The firemen make rounds through the wards, posing for photos, handing out gifts. A full Christmas lunch is put on for all of the families downstairs.
At one stage in this long day, a major TV news station comes by our room for a quick interview. ‘How is it spending Christmas at the Children’s Hospital?’ they ask us. ‘What things have made it special for your son?’ Some friends from France who have also recently moved to Australia see us on the six o’clock news that night. They arrive the next day after driving three hours to Melbourne, loaded with food, games and much-needed love and support.
Of all the surprises that occur on Christmas, the most significant relate to the care Oliver receives. Doctors, nurses and physios introduce themselves, talk to us and include us in decisions. This involvement is a direct antidote to the powerlessness of this illness, returning a measure of control to us.
Although he has improved hugely since the day before, we’re still expecting tight restrictions on Oliver’s activity. John, his nurse, comes to speak with us first thing Christmas morning.
‘How does Oliver seem to you today?’
Darryl begins. ‘He looks a lot better, but he was so sick yesterday …’
‘Yeah, of course. But he seems a lot better to me also. He’s clearly itching to try out his toys. I was thinking we could let him out of bed when his IV finishes and see how he goes. How do you both feel about that?’
We have given Oliver a scooter and Aidan a skateboard for Christmas. John keeps an eye out as the two of them drag-race up and down the corridor throughout the day. Initially I am anxious, fearing a telling-off by the nurses. Yet they are good-natured, joking with the boys, side-stepping the wheels. When the doctor comes by for rounds he notes Oliver’s improvement, commenting that it’s looking more like a severe asthma episode and less like infection. And even he seems comfortable with the drag races. It’s as if, at least for this one day, the serious business of medicine is making space for the serious business of Christmas and sacred family time. We are moved by the experience. To the staff, Oliver is more than a CF patient: he’s a child; a wound-up four-year-old boy on Christmas. And we are grateful for that.
***
One thing I’m learning is that no place is perfect; changing countries is about exchanging some improvements for some shortcomings. Before we came to Australia I knew that one of its downsides would be the presence of many of the world’s most dangerous creatures. It’s a good thing the healthcare is so family-friendly in our new country since our chances of ending up in the hospital from some dangerous animal bite seems to be high. Apparently Australia is the only nation with more venomous than non-venomous snakes: of the 155 species of land snakes, I learn, a full 93 are poisonous. It turns out that five of the country’s most dangerous varieties—Tiger, Eastern and Western Brown, Copperheads and Red-bellied Black snakes—can be found in suburban Melbourne backyards. Just like ours. The Tiger snake’s bite can result in paralysis, blood that won’t coagulate and muscle damage, possibly leading to renal failure. In Paris, we plied our kids with rules on street-crossing and stranger dangers but here the enemy may be lurking under our backdoor mat.
Luckily we manage to avoid stepping on snakes, but we have only been in Australia a few months when we meet another common Aussie critter. One evening, about forty-five minutes after putting the kids to bed, Oliver trots down the hall excitedly announcing the presence of a spider in his room. A big spider. Darryl agrees to deal with the offending creature. Moments later he returns, looking shaken.
‘Sue, you had better come and see this—it’s big.’ Clearly it is far beyond the scale of the flimsy daddy-long-legs in our Parisian apartment.
‘No, thanks. You can deal with it.’
‘No, really, you have to come.’ By now he is insisting, almost pleading, clearly not wanting to face it alone. This is one of the few times I’d prefer to have a traditional alpha-male husband telling me not to worry my pretty little head about spiders because he’ll take care of them. Instead, Darryl is skittish and unhelpful. Normally by the time we finish arguing over ‘who killed the last one’, the spider is out the door and on his way. But no sir, not tonight.
This Huntsman spider is about fifteen centimetres across with the trademark furry legs. And surprisingly, given his bulk, he can really move. Up the wall, across the ceiling, down the other wall; we chase him with two brooms, like some comic episode from The Three Stooges. The overhead light is on, Darryl and I each wield a weapon, Oliver shouts unhelpful instructions like, ‘There he is. Hurry up, Mum. Get him, Dad.’ Meanwhile Aidan persists in a heavy sleep on his loft-bed, at times perilously close to swinging brooms and hairy legs.
&n
bsp; Eventually we bring in the heavy artillery: the vacuum cleaner. After three near-misses, the Huntsman disappears under the bed. Several minutes later we are moving Oliver’s bed, one final step before evacuation of the room, when he suddenly screams.
‘There it is, Mum, on your hand!’
Sure enough, it has popped out of the bed on to the headboard and is crawling up my hand, in a vain attempt to befriend me. Now, I know this Huntsman is harmless because my Australian friends have been telling me that for months. But harmless has no meaning when bushy legs are prickling the skin. I shake myself free and vault on top of Aidan’s bed while Darryl sucks him up with the vacuum.
Oliver is content to climb back into his trodden-on bed; Aidan continues his peaceful sleep, while Darryl and I check every window and screen in the house before performing a thorough search of our bed.
Just six months after arriving in Australia—this massive, gentle-giant of a country—we’re beginning to feel at home. We have traded our Renault for a Holden, rigid etiquette for warm and welcoming barbeques, a strict medical culture for one more child and family-friendly, a busy urban environment for Huntsmen in the house and Tiger snakes in the garden (thankfully not yet). We have lost views of the Seine and the Eiffel Tower from our window, gaining empty, untouched coastline and wild, open spaces for our children to explore. Any longings for buttery, garlic-infused escargot or delicate mousse au chocolat are balanced by Kung Pao chicken in a Chinatown alleyway, fresh ravioli on Lygon Street or even a steaming sausage with onions on a cold, wintry day at the local Australian Rules football ground.
The trade-offs we have made aren’t necessarily even, one-for-one, like exchanging a size twelve cardigan for a size fourteen. No, it’s more like returning the sling-back sandals for knee-high boots: both useful, but for different seasons. Although early days, our Australian season looks to be an excellent fit.
14
CARE MATTERS
It’s 7:30am on a Monday morning, a school day. In the midst of making lunches and pulling out the Cheerios, I’m chasing after a now six-year-old pyjama-clad Oliver while holding a little plastic jar in front of him.
‘Okay, honey, can you give me a really big cough?’
He does a pathetic little whimper of a cough, like he’s clearing the tiniest speck of dust from his throat. ‘There,’ looking up with a satisfied grin. He’s playing me with all the skill of a concert pianist.
‘Come on, I need something bigger than that, you know, the kind of coughing you’ve been doing all weekend.’ He does a slightly bigger one just to appease me. ‘Great, now spit! In here, Oliver, into the jar!’
Asking him to cough something up and then spit it with enough accuracy to hit the shot-glass size jar is optimistic. But we have to try. Over the weekend he has developed a cough, setting off our worry monitors. Darryl drops the sample at the hospital later that morning. We’ll talk to his doctor in three days to find out if any bacteria are growing in his lungs.
That night after putting the kids to bed Darryl and I sit down in front of the fire with our books, cups of tea and the day’s mail.
‘Here’s a letter from your dad, Sue,’ he says, passing a thick envelope to me. ‘Looks like there’s something else in there too.’
My dad has been writing me between one and two letters a week since I left for college more than twenty-five years ago. He keeps me updated on the family’s comings and goings and includes local news—brides, births and burials—and other items of interest. Opening the envelope, I can see that this week’s offerings include an article from The New Yorker magazine. ‘It looks like it’s about CF. It’s an article called The Bell Curve.’
Written by American surgeon and medical writer Atul Gawande, the piece is fascinating. Addressing the broader question of differences in quality of healthcare, Gawande takes an in-depth look at cystic fibrosis clinics across the U.S. Over the years Darryl and I have read many health-related articles—research, personal stories, inspirational or cautionary tales—but this one is different.
‘Listen to this, Darryl’ as I begin reading to him:
‘It used to be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant. If you plotted a graph showing the results of all the centers treating cystic fibrosis—or any other disease, for that matter—people expected that the curve would look something like a shark fin, with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle.’
It turns out that Gawande chose a perfect illness for a case study on quality of care. For over forty years the US CF Foundation has been collecting detailed data on lung function, nutrition and life expectancy from specialised centres. They know which centres have good success at these things and which don’t.
‘Oh, wow. Darryl, listen to this:
‘By 1966, mortality from CF nationally had dropped so much that the average life expectancy of CF patients had already reached ten years. By 1972, it was eighteen years—a rapid and remarkable transformation. At the same time, though, Matthews’ center had got even better. The—’
‘Hang on, who’s Matthews?’
‘He’s a CF doc from Cleveland. He was treating kids aggressively back in the 1950s and 60s. In 1957 his patients were living to twenty-one while across the rest of the country they were still dying at age three! Anyway, let me finish reading you this.
‘Matthews’s center published its results. By the early nineteen-seventies, ninety-five per cent of patients who had gone there before severe lung disease set in were living past their eighteenth birthday. There was a bell curve, and the spread had narrowed a little. Yet every time the average moved up Matthews and a few others somehow managed to stay ahead of the pack. In 2003, life expectancy with CF had risen to thirty-three years nationally, but at the best center it was more than forty-seven.”’
‘Sue, that’s fourteen years difference!’
‘I know. I know. What’s really amazing is that he’s not talking about fourteen years between the best and the worst places: that difference is between an average hospital and the top. The difference between the top and bottom would be even more. He says that while lung function for children at an average centre is about seventy-five per cent, at the top centres it’s … quote indistinguishable from that of children who do not have CF.’
We’re both quiet for a few minutes before Darryl speaks. ‘We have got to make sure that the care we’re getting allows our kids to have lungs like that …’
Three days later we get the news from the hospital that Oliver’s lab results have come back clean so his cough is probably just a run-of-the-mill virus. The release in tension is palpable. Thank you. False alarms are always worth celebrating. In fact, we have begun celebrating good news any chance we can. Partly it’s true gratitude. Partly it’s a way for us to maintain our optimism. Living well with CF means we need to build up our family’s strength and positivity. Our celebration that night consists of two extra-large, super cheesy pizzas for dinner and ice cream sundaes for dessert.
***
‘Aidan, please come and do your physio,’ I call from the kitchen.
Our physiotherapy has changed with time. It no longer requires clapping Aidan and Oliver’s back and chest like smacking shoes together to release caked mud. Nor is there a Jean-Pierre to do his CPR version of physio. Instead the kids do a series of long blows into a small positive pressure mask, helping to briefly splint open the airways, followed by huffs and coughs. It takes about fifteen minutes to do properly, an hour in total if you include the forty-five minutes of badgering and moaning.
Five minutes later I yell out again, ‘Aidan, let’s go. It’s nearly dinner. Come and do it right now.’
This is one of those things I vowed I’d never do as a mother: stand behind
the kitchen benchtop with an apron, peeling potatoes and hollering orders around the house to rally the troops. At least I have managed to avoid the apron.
Finally, Aidan appears from down the hall, book in one hand. Slowly—so slowly, in fact, it’s not at first clear that he’s moving—he climbs on the kitchen stool. Then he begins to speak, deliberate and grouchy.
‘Nobody else I know has to do physio.’
‘What about Oliver?’ I can’t resist.
‘Very funny. Apart from Oliver. You know what I mean, Mum.’
‘Yeah, I know. And you’re probably right. But they may have something else going on.’
‘Like what?’ he asks.
‘Most people have something they don’t like. Think of the kids at your school with nut allergies. Or the boy with diabetes.’
‘Yeah, but I bet they don’t have to do as much as I do.’
‘Probably not.’
‘See what I mean?’ he adds, point proven.
‘I know.’
He’s right. I can’t think of another kid who does anything near what he does just to stay healthy. I hesitate for a few minutes then continue. ‘Look, I agree having CF is rotten, really rotten. But at least we can fight it by doing things that help keep you well.’
I know the futility of my words. This argument makes perfect sense to an adult but means nothing to him, an eight-year-old who looks and feels fine. It’s like trying to convince a young Lleyton Hewitt not to hammer his knees and shoulders on the tennis court or they may let him down when he’s twenty-eight.
‘What’s the point of trying when I’m going to die at thirty anyway?’
This isn’t the first time he has said this. The first time nearly flattened me on the spot, like an electric prod to the heart, kicking off an emotional spiral that lasted several days. Hearing this from his mouth is still almost physical pain, like an acceptance of what I’ve fought so hard not to accept. But I now know that it’s more a comment intended to get a reaction from me rather than an admission of defeat from him. Breathe. Help. Breathe. Pray.