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The first seven days

If I were in a super cheesy American movie, like A Walk to Remember, I would start this off by saying something like ‘it felt like just another day’. In a way, it did, but not really.

Wednesday 19 August 2009 was a very different day. I didn’t go to school, as I didn’t have many classes, and I was supposed to be going to the doctor’s at around 2.30 anyway. For about two weeks I had been feeling dizzy whenever I stood up. I would get headaches that lasted for an hour after standing up and I was tired all the time. Mum was worried that I had what my eldest sister has — Benign Intracranial Hypertension. For all those out there wondering, ‘What the hell is that?’ it’s when you overproduce spinal fluid, and you pretty much live with a massive migraine. Not too pleasant.

Anyway, so Mum and I went to see our doctor, Larry Goodfellow, who is more affectionately known as Larry. He sent me to have a blood test straight after my appointment, then I headed to my joyous job at McDonald’s. It wasn’t too bad a shift that night, actually. I almost enjoyed myself. And I got to go home early! Bonus! One of the managers, Matt, gave me a suspicious note, saying, ‘Give this to your mum. And don’t read it!’ Naturally, as soon as I had called home asking for someone to come pick me up and was outside and out of sight, I ripped it open. The note said something about letting Matt know how everything goes. He included his phone number so Mum could do so.

I read the note and thought, ‘Oh man, she’s called to tell him our bloody sob story. Sigh …’ Then my sister Justine (Jud, for short) pulled up in her lovely little Getz. I showed her the note and she made a comment about Matt’s seriously dodgy discretion. I thought, ‘Huh?’

So we drove home and walked through the door saying something like, ‘What’s for tea?’ only to see that everyone had pink faces from crying. I thought, ‘Oh crap, who’s died?’ I walked into the dining room and Mum told me to sit down. ‘Pete, your blood test results have come back. Larry’s coming around to talk to us about them. They think you might have leukaemia.’ At this point Ellie starts crying again and I, ever the eloquent one, say, ‘Shit’. Everyone gives me a look to say that they are in full agreeance.

I had a shower, then Larry came round and told us to go to Emerge (that’s ‘Emergency’, folks) at the Royal Children’s Hospital in Melbourne. My sister Madeline looked like a lost sheep. Jud helped me pack a bag full of all the important things — clean undies, pyjamas, a copy of Dickens’ Bleak House and the all-important Baywatch perfume. (That was a running joke between us. Whenever any of my sisters or I went away, someone would smuggle the Baywatch perfume into our bags. It was foul — but hilarious.)

Mum went to get petrol and to see my school principal, Mr Delaney, who agreed to break the news to my school friends the following morning, and then Mum, Ellie and I headed off to Melbourne, listening to Love [Song] Dedications Hour on the radio. Lovely.

After many, many hours of sitting on a terribly uncomfortable bed in the emergency ward being poked, prodded, pricked and eventually cannulated, I was finally given a slightly more comfortable bed on the third floor. This floor is divided into two areas. One wing is for the little kids and babies, and the other is for the adolescents. I was amused to see that the sign on the door to the adolescents’ wing had ‘3East’ written on it, graffiti-style. It was like the hospital was trying to appear ‘cool’ to the teenage patients. I found this quite funny, in a sad way.

Anyway, so I was given a bed in a ward that already held five patients. Mum and Ellie were allowed to crash on two ridiculously soft, beige, suede couches in a small meeting room on the ward. None of us had much sleep. According to Ellie, Mum’s snoring was worse than usual. Frankly, I was surprised anyone in the wards nearby was able to sleep. Neither door nor earphones could block out the sounds of Mum snoring.

* * *

Peta Rose Margetts made her entrance into the world at 3.37am on 19 October 1992. She arrived courtesy of an emergency caesar after a twenty-one-hour labour had failed to encourage her — she was already ten days late. I was most unimpressed, as I had spent my birthday labouring, but she seemed determined that we would not share our birthdays! Peta and I did not meet until later that day. I knew she was big — five kilos exactly — and she was long, so long that someone had to bring a measuring tape in, as she was longer than the measuring board! She was huge, about the size of a three-month-old baby, with enormous hands and feet. Right from the start she was the most content child. Even before we left the hospital people were enamoured with her. She would smile at the nurses, who fought over her to give her night feeds while they let me (now a mother of five) get some rest. When the paediatrician checked her over before we left the hospital, he was amazed at her strength. At just six days old she was up on all fours with her head sticking up over the edge of the crib.

Peter and I took our last addition home to settle in with her four older sisters. They all adored her and were delighted with this very happy baby. Naomi was ten; Ellie, eight-and-a-half; Madeline, seven; and Justine, five-and-a-half — it was a crazy house full of willing helpers! Peta Rose, as everyone called her, seemed to know her place in the world. She slept through the night from ten days old and it never bothered her if I raised my voice. She was the most wonderful baby.

Peta was very transportable — she needed to be, as she had come into a busy house with school and after-school activities and sport all weekend. When she was six weeks old I visited my obstetrician for a check-up; he was enthralled. Peta stood rigidly on his knee, screaming her lungs out, tears falling down her cheeks. She looked like a mini-warrior. Even after all the babies he had seen, he thought she was extraordinary. He said she was obviously well into her development before she was born.

This pattern continued with Peta. She was always on the ninety-seventh percentile on the growth charts, and she did everything early — solid food, crawling, walking, talking. Our maternal and child welfare nurse would say, ‘I have never seen a baby with such gross motor skill development!’ My mother, a retired schoolteacher, was astounded by Peta’s vocabulary. At fourteen months she would walk around the house saying, ‘It’s disgusting.’

* * *

Thursday 20 August 2009

Somehow, we all managed to wake at an early hour and function somewhat normally. This would be a day of sitting around — literally. Thankfully, one of the educators at the hospital gave me a password for the laptop in the chest of drawers next to my bed. Despite there being blocks on nearly every social networking site you could think of, Facebook was not blocked. Hallelujah! The discovery of an abandoned room fan right next to my bed was our next blessing. The whole floor was stiflingly hot and ridiculously stuffy. The breeze from that fan was heavenly!

Eventually, at the end of the day, I was taken down to the second floor for a bone marrow aspirate and a lumbar puncture. A bone marrow aspirate, for those out of the loop, is a procedure where they insert an obscenely long needle into your hip and take a scraping of the cells in your bone marrow. This is apparently very painful, but thankfully they give you a general anaesthetic so you don’t feel a thing. A lumbar puncture involves another obscenely long needle, this time inserted into the base of your spine to extract some spinal fluid for testing. When I came out of theatre I was a bit out of it, understandably, and pretty much went straight back to sleep the moment I woke up! Thankfully, they wheeled me back to 3East on my recovery bed. It would have been quite funny if I’d had to walk!

Back on the ward, I said goodbye to Ellie and Mum, who went across the road to Ronald McDonald House for a proper night’s sleep while I went back to my dozing. However, I was soon rudely interrupted — by myself. The drugs they had given me to send me to sleep, and the lumbar puncture in general, had upset my system and I was experiencing my very first medically-induced bout of nausea and vomiting. What a joyous time. I signalled to the closest nurse that I thought I might be sick, but she was too late with the sick bag. There was watery vomit all over me, and all over the floor. Luckily, I was wearing a hospital gown, so no real harm was done to my clothes, and I needed a shower anyway. You could say that the nausea was my body’s way of telling me it was time for a shower.

* * *

Friday 21 August 2009

Today was an interesting day. The educators finally convinced me to attend ‘school’. Off one of the other small wards in 3East there was a ramp leading to an external recreation room. It looked like a big rumpus room, with a pool table, a wall of books, art on the walls and four small study alcoves next to a bunch of tables with strange, misshapen, curved sides. Attending this ‘school’ were a few students of varying ages. Some were doing remedial maths, and a few others were just about to begin some creative writing. As soon as I walked in, with my fluid pump connected to the cannula in my hand, I thought, ‘Brilliant! I haven’t done creative writing like this since primary school!’ I was really getting into the writing when a nurse came to tell me I had a ‘special visitor’. I went out, all excited, only to discover my grandmother. Without Mum or Ellie, who had deserted me to go and do something, somewhere, I spent a very uninteresting forty-five minutes or so with Grandma, who had come to see me while she waited for a bus home to Bairnsdale, after trekking to Melbourne for something related to her beloved Catholic Women’s League.

After Grandma left and Mum and Ellie had miraculously returned, we met with John Heath, who was to be my oncology doctor, in the small meeting room where Ellie and Mum had slept on the Wednesday. Because I had a drip in, one of the nurses, also called Ellie, had to come to the meeting with us. I never did like her much. She was super nice to all the other patients on the ward, but never me. She sat through the meeting with a bored frown on her face and played with her Volley shoe. I watched her and thought, ‘We’re sitting here listening to John, our nurse coordinator Jayne, and an oncology fellow discuss my diagnosis and what will happen to me, and you’re playing with your shoe. Real nice!’

On a lighter note, they told us that: yes, you will have approximately three years of treatment, and you will lose your hair, but they thought that my diagnosis of ALL (Acute Lymphoblastic Leukaemia) would result in my eventually being cured. Bonus!

I truly thought that meeting would never end, but we were eventually released so that I could have my very first blood transfusion. It’s a little off-putting to watch the blood slowly leaving the bag and entering my drip. As the bag empties it leaves plenty of residue behind, which, frankly, looks a little gruesome.

During this time, I was inundated with texts and phone calls from worried friends who had been told about my diagnosis. From what I can gather, there were a few tears from some of the teachers, and plenty more from my friends and classmates. I wished I could have been there to tell everyone I really was okay, and to stop stressing.

* * *

Outwardly, Peta was always a quiet girl, but she was never quiet at home or with her sisters. She was the only one of our girls who loved dolls, and she had her team of toys on many adventures. Peta’s life was a happy one. She loved being at home and always found some way to entertain herself. At four we gave her a puppy, Scrappy. He would be dressed up alongside all of her dolls and teddies and be part of Peta’s imaginary world. Even then, she loved making up stories. Peta had an astonishing awareness for things around her; she was fascinated by the movement of clouds and the insects in the garden. At four, she could tell me why E.T. had to go home. Peta could write sentences before she went to kinder, and she was reading at an early age as well. Her kindergarten teacher had to locate eighty-piece puzzles to accommodate her. Peta never had a tantrum and rarely cried — she was a happy, content, messy little girl.

At the start of year one, Peta’s new school principal came to find me. She told me to get Peta into art class. She had seen one of her drawings and said that you could not teach that sort of perspective. Even then, Peta could draw in 3-D. The next year, we moved to Canberra and put Peta into art class. She was in her element, starting with charcoal and then moving on to chalk and pastel. Peta’s love of books also grew. She read her first Harry Potter with Ellie at the age of eight. She had completed her school’s reading program by year four and then turned to the Canberra Times on a daily basis, picking and choosing the things that interested her (including the cartoons, naturally).

Peta loved life in Canberra. She was still taller than just about everyone, and quiet, but she possessed a wicked sense of humour and was very much valued by all of her classmates. As she was such a good reader, Peta was often chosen to be a presenter at school assemblies. She hated being the centre of attention, though, and couldn’t cope with being in front of everyone.

I distinctly remember watching Peta with her classmates one afternoon as I waited for the bell to ring, and thinking that this girl of mine was going to do something very special one day. I cannot explain how or why I felt that.

We moved back to Victoria for the last term of year six. The move was difficult for Peta, and for the first time she encountered bullying. We had moved to a rural area and some of the local kids took exception to this quiet, new girl. One fellow student in particular made life extremely difficult for Peta. Thankfully, the bully did not go to the secondary school that Peta went to, and life settled down again after a while.

Around the end of year eight Peta began to emerge from her shyness and show her true self and that bold personality that we knew so well. She possessed a wry sense of humour and had very strong opinions on most topics. She was extremely well-read and devoured books, particularly the classics. She loved Blackadder and most English comedies, and her favourite movie was Flying High.

Peta loved spending time with her sisters and was still enjoying her art classes. She had built some firm friendships at school and was no longer afraid to show that she knew stuff. Peta joined the debating team. She preferred to be the researcher than the presenter, but she persevered regardless.

We moved to Leongatha at the end of 2008, and Peta was happy to be living in the centre of town. She reluctantly sought a casual job and began work at the local McDonald’s, but school remained her focus. Peta loved knowledge. If she was not satisfied with what she knew about something, she would research it until she felt sure she understood it all. She would scan a dictionary for the fun of it.

* * *

Saturday 22 August 2009

Finally, the week was over and I could look forward to a visit from two of my sisters, Jud and Yome (that’s Naomi’s nickname), and my good friend Jane.

Yome and Jud kindly brought me a hot chocolate from McCafé and a goody bag full of all the essentials: Dominoes, Barrel of Monkeys, Uno, a mini-Magna Doodle and various other amusing items. The half a day they spent with me felt like one of those days when we would sit around playing board games all afternoon. When Jud and Yome left, they took Ellie back with them. She had to return to her job as a secondary school teacher, having not had a decent night’s sleep thanks to Mum’s amazing snoring skills.

A short time later Jane arrived, and we spent a pleasant afternoon talking about frivolous things to do with nothing in particular. Jane was amused and intrigued by my eating the super oily spaghetti inside a bread roll. It tastes better that way, honestly!

After Janos left (I call her Janos, or alternatively ‘the Greek Island’; ‘Janos’ does sound kind of Greek, doesn’t it?), I had yet another blood transfusion. Another patient was put into the bed to my right. This charming young girl’s name was Bec and, boy, was she a ripper. She had meningitis and kept complaining that she wasn’t allowed out for a smoke. She had only just turned sixteen. Her family stayed for about half an hour before leaving her to read trashy teen mags and complain about missing the weekend’s parties, and the fact that the doctors had done a lumbar puncture right in the middle of her crucifix tattoo. The poor dear! Eventually, after talking about her ‘terrible’ health problems that couldn’t possibly be outdone by anything, she eventually ran out of things to say and finally asked me why I was in hospital. I just smiled, I suppose as a way of stopping myself from laughing, and Mum, who had been enjoying Bec’s amusing company just as much as I had, simply stated, ‘Peta has leukaemia.’ Bec, unsure how to respond, said, ‘Oh.’ Ha, take that, Bec! Didn’t think anything could be worse than meningitis, did you?

Moving on from my wholesome bed buddy, Sunday was a lovely day. Jud rang Mum to say that she and Ellie were going to clean my incredibly filthy bedroom. I thought this was awesome! I mean, who actually likes cleaning their room? I almost always find creepy bugs or enormous spiders of some kind, and I most definitely do not get along with creepy crawlies. They make me itch. It’s a psychological thing, I suspect. Coz I’m special.

Anyway, so while they were all at home back in Leongatha, Mum and I chilled in the hospital, enjoying Bec’s lovely company and waiting around for Madeline and some of my friends to visit. Eventually Mad and my friends Claire, Bronte, Joel and Emma (with her boyfriend Brendan tagging along) arrived. We went up to the Education/Rumpus area. Some played pool — I didn’t, for the personal safety of the others. I was talking to Emma and Claire when my old friend Caroline arrived. This was a monumental occasion — I hadn’t seen Caroline since we were in grade two, when I moved from Melbourne to Canberra. We had found each other on MySpace and Facebook months beforehand and become friends again. Seeing Caroline for the first time in nine years was very exciting, if a little weird. Imagine catching up with your best friend from when you were eight with an audience of complete strangers (for Caroline). Awkward!

After a pleasant few hours, eventually everyone left, including Mum, who had to go back to Gatha (this is the ‘hip’ — read: lazy — way of saying ‘Leongatha’) for some reason, leaving me to a nice quiet night of television watching. Needless to say, I had no problem with that.

* * *

Monday 24 August 2009

The next day everything picked back up to a ridiculously fast pace. Ugh, Monday. Monday meant lots of people having tests and various procedures done, with nurses running around like mad, trying to keep up with what the patients wanted. I felt quite sorry for them as I sat on my bed, reading magazines and contemplating the world all by myself. One of the doctors came by with a heavy stack of information on leukaemia and dates for appointments. Boy, did she have a lot to say. All of it went in one ear and straight out the other. If you’re going to hit with me information, do it slowly, and make sure I’m hydrated enough to keep up! Listening truly is a sport sometimes. Some days it can take about as much effort as running a marathon! Eventually she left me to absorb whatever it was she had just told me. By the time I had done that, Mum had returned. Her good friend Rose had decided to come for a visit, and the three of us were taken on a tour of the sixth floor — the oncology floor. This floor would be a second home for me and Mum for the next three years. I was glad it was colourful and bright.

Once we had returned to the third floor, Jayne, the nurse coordinator who had taken us on the tour, took me into a procedure room and gave me two chemotherapy ‘pushes’ into the drip in my hand. Basically, this involves a relatively small quantity of funny-coloured liquid in humungous syringes being pushed through the drip into my bloodstream. I didn’t have any complaints from the chemo; my only grumble was at the extremely cold temperature of the liquid when it first entered my bloodstream. What, they couldn’t have taken it out of the fridge and let it reach room temperature first? Inconsiderate, I say!

To give this day a melancholic ending, the doctors decided that I would need yet another blood transfusion. Could they not make up their minds or something? I felt sure that if they gave me any more blood it would start spilling out of my nose and ears! Thankfully, nothing gruesome came of this possible overload of blood cells. But they should be more careful — I’m quite sure it’s possible for something like that to happen!

* * *

Tuesday 25 August 2009

The next day was incredibly dull. Mum said I must have been going stir-crazy from spending so long in a confined space. This is probably true — I was very cranky. So cranky that I nearly cried a number of times throughout the day because I really, really wanted to go home. I was just a little homesick. Just a tiny bit. Mum and I sat around all day, waiting for the pharmacist to come and give me all the pills I would need for the next twenty-nine days or so. And, boy, were there a lot of them — so many that I was given a timetable listing each pill’s name, what it was for, when I needed to take it and whether it had to be taken with food. Can you say complicated?! After getting our instructions, it was finally time to make the two-hour trip home. I was so glad when we finally arrived at around 8.30pm. I could sleep in my own crappy double bed, rather than a crappy hospital bed. I could see our dogs, Jethro and Henry, and enjoy real food, not that suspicious-looking hospital stuff. I was in heaven. Home equals bliss.

* * *

Although Peta was in many respects the perfect child, she did cause us some serious concerns. She was admitted to the emergency department at Monash Medical Centre so many times she had her own admission card! Peta was a bit of a devil. She thought she could do exactly the same as her older sisters. On one occasion, I walked into the kitchen to find her wielding my sharpest knife, trying to quarter an orange. She was eighteen months old.

I took Peta with me wherever I went, including the girls’ school, where I volunteered. I had been making a patchwork quilt with Ellie’s class, which was on the top floor of Sacred Heart Primary School in Oakleigh. All of the kids at school loved having Peta there, and attentively made sure the door was closed and kept an eye on her. One day, I looked up to see that the door was open. I made straight for the door — no Peta. Something made me head for the stairs. I looked down, but saw nothing. I kept going. At the bottom of the stairs, right outside Naomi’s classroom, lay Peta, facedown on the stairs. She had fallen from a frightening height and dropped about twenty feet! I scooped her up in my arms; she was black around the eyes and not making a sound. The principal drove us to the Monash Medical Centre. Peta was very lucky — they say babies and drunks fall well, and it appeared she was only slightly concussed and had an enlarged spleen. Phew!

The biggest scare Peta gave us was as a two-year-old. It was school holidays, the day after Madeline’s birthday. Peta was playing with Mad in the bedroom next to where I was sewing. Things had been silent for about two minutes when I got up to investigate. Peta had climbed on top of a beanbag and prised open the cupboard that was built into the wall. She had scaled all of the narrow shelves to the very top and somehow managed to pop the blister packet of Phenergan tablets. I had no idea how many she had eaten. I threw her into the front seat of the family Kombi and poked her to make sure she didn’t fall asleep as I drove the ten minutes to hospital. Peta had her stomach pumped and a nasal gastric tube inserted with charcoal to absorb the toxins. Peta fought everybody — she fought so hard she burst the blood vessels in her face. She survived. She, and we, were so lucky. Peta had swallowed eighteen adult strength tablets. She returned home the next day as if nothing had happened, the little bugger.

* * *

A few days of freedom

Wednesday 26 August 2009

This day was to be a day of rest — only, without the rest, really, as my grandparents had decided to come over from Bairnsdale for a visit. These visits are an opportunity for Grandma to sit at our kitchen table, eating the baked goods she brought for us, and talk and talk and then talk some more. Seriously, does that woman ever stop talking? Meanwhile, Grandpa goes from reading the paper to sitting on our front porch smoking his pipe, then back inside to watch some dull daytime television with me.

It was while I was half falling asleep watching The Ellen DeGeneres Show that I got a blood nose. Mum pretty much instantly started to freak out, as only a mother can. ‘Are you alright?’ ‘Has it stopped yet?’ ‘Do you want some more tissues?’ ‘Here, have a box of tissues.’ She called the hospital repeatedly to ask what we should do. A bored nurse on the other end recommended various things to stop the bleeding, and said that if it didn’t stop we should come in to Melbourne. Grandma just sat there at the table and talked about the time she had haemorrhaged many, many years ago. The bleeding stopped about ten minutes later, which I was grateful for, as I was definitely not keen on going back to hospital so soon after finally being discharged.

* * *

Thursday 27 August 2009

After a lovely quiet night at home, I got up the next morning, preparing myself to go to school. I had no idea how the rest of the school year was going to work. Year eleven — not as important as year twelve, but it’s certainly up there! I was doing History 3 & 4 and Literature 3 & 4 as well as a few other standard year eleven subjects. I had no idea what was going to happen, no clue how many times I would be required to come to the hospital, or how the drugs would affect my body and my concentration. I just knew I had to do whatever I could to maintain as much normality as possible. ‘You can do this,’ I thought. ‘Can’t you?’ I had no idea whether I could or not; all I knew was that I had to try.

School that day was hard. I was smothered by hugs basically everywhere I went, and was so exhausted — both mentally and physically — that I couldn’t last the whole day. I decided it was time to go home at 2.15pm, which was good, as it gave me time to change and get ready for my doctor’s appointment with Larry later that afternoon. Larry is a lovely doctor, but whenever someone says something in our appointments, there is almost always a really long silence. I always want to laugh, but I manage to stop myself, somehow. I’m very proud of that skill, as it’s extremely difficult to master.

* * *

Friday 28 August 2009

On Friday it was time for our follow-up appointment. We were told it would be with John, but I think it was actually his day off, so Mum and I met with Dr Seong Lim Khaw for a brief check-up and discussion about the chemo I was to have that day. Apparently I would have two injections, one jab in each thigh. This was to be followed by a four-hour wait in day oncology. Oh, what a joy. At least I got to watch a few minutes of The Simpsons on the TV in the back procedure room while I was being stabbed by two nurses. I suppose there’s an upside to everything!

* * *

Peter continued to go away for work, as he had done for some years. The girls were used to this way of life and I held the fort. In June 2009, he revealed that he was not coming home. We were devastated — our family had changed forever. Peta, who had always been quiet when her father was absent, coped very well and was incredibly mature about the situation. She rationalised the situation by saying that her father left when she was six, when in fact she was sixteen by then. She always had a unique way of looking at things. We coped as well as we could. But when Peta was diagnosed with leukaemia, our lives were rocked even more.

* * *

Saturday 29 August 2009

And then came the weekend. Bliss. I usually love the weekend because that’s when I get to spend time with my sisters and occasionally see my friends. Usually, a weekend at our house involves watching several movies in a row and sometimes eating copious amounts of unhealthy food. It’s lovely. This particular weekend, Juddles and I went to see Pelham 123. You know, the John Travolta movie where he has a really scary moustache. Anyway, we were a bit disappointed in the movie, but it was nice to spend some time doing ‘normal’ teenager stuff. I had a feeling that I wouldn’t get much time to do that kind of stuff, particularly with my friends.