of the house. That had been followed by a stop for a killer brownie and a milkshake, and when that still hadn’t filled enough time, I took her shopping! What an effort it had been to keep this surprise from her. The bed meant that Peta would be comfortable after her chemo sessions. Given that she would be spending much more time in bed (a prospect she was quite happy with, in that typically teenage way), this was wonderful. Peta was delighted with her new bed — how she appreciated the gesture from everyone. There was enough room for her sisters to crawl in there with her. The new bed would become Peta’s best friend.
October proved to be an up and down month for Peta. She had been unwell pretty much all month, and each day seemed unpredictable. Peta had planned a special garden party for our birthdays (mine is the 18th, and Peta’s the 19th). Peta wanted them to be special, considering the year we’d had. She carefully made the invitations with her theme in mind. It was to be a girls-only event, with a carefully chosen menu, fine china and girly things. Peta wanted a nice, relaxing party where she could wear a particular dress that I had made for her. She was unwell for the whole week leading up to her seventeenth birthday and repeatedly said that she felt about seventy. I had a feeling that the party would not happen.
On 12 October, Madeline and her boyfriend, Kurt, moved to Queensland. They left for a change of lifestyle and a bit of adventure. Madeline had no doubt that her youngest sister would overcome her illness. She knew Peta was strong.
The following day, we went to Melbourne for a lumbar puncture and chemo as per usual. The day went to plan and we left in record time: in and out in an hour and a half! However, Peta was unwell on the way home, and she got progressively worse. All Ellie, Justine and I could do was maintain a clear path to the toilet and have a pile of chuck bags at the ready. The girls sucked up their own aversion to vomiting and bravely supported their sister, standing by with face cloths and removing those chuck bags. Finally, after many hours, the anti-nausea drugs kicked in and Pete got some sleep. Thankfully, the next day was better, but from then on the anti-nausea drugs were just as important as the chemo.
As our birthdays approached Peta was very pale and looked more and more like most of the other sixth-floor kids. She had become accustomed to her usually fresh face being blotchy and red — an unwelcome side effect of the chemo. Peta was less than happy about this, as she had always taken care of her skin. Her hands also peeled. Despite all of this, Peta was in very good spirits. All was going well at this stage, although life was no longer as predictable as it had been in the initial weeks of treatment. But she was in remission.
* * *
Friday 16 October 2009
We headed over to LRH because Peta needed blood and platelets. This was probably the first time Peta had any significant petechiae, which was the common indicator of the need for a blood transfusion. Just like all of the numbers we were so familiar with, those little dots became a part of the weekly routine. We had to stay longer than anticipated as Peta was neutropenic and our team at LRH were always very cautious with her. The blood products arrived late, as was now normal, and when I returned early on the Saturday morning Peta was unwell. She had spiked a fever while the blood was being administered. Whenever this happens, blood cultures need to be taken to see what sort of bug might be cooking. I suspected that we would be celebrating our birthdays in LRH.
I was right; Peta wasn’t going anywhere.
My good friend Gwen drove down from Melbourne to be with us for our birthdays and kept us company at LRH. Peta was very comfortable with Gwen, and her company was a nice diversion for us. At home, Ellie was cooking a special ginger cake for me. I managed to get a slice of it late that night, but I was only home for a nap then it was back to LRH the next morning for Peta’s birthday. I was hoping I could bring her home, but our hopes were dashed. Pete had to stay.
We made the best of a bad situation. Ellie and Justine, along with my parents, who had travelled down to see Peta, were instructed to come to the hospital instead. Naomi was rostered on in Emergency, so she popped in for a while before work. We all looked very silly, wearing masks that resembled duck beaks and trying to eat cake! Peta finally got to go home the next day, but even after all of the blood, platelets and antibiotics, Peta still did not feel well. She had to have a blood test, but despite having been pumped full of blood, our pathology girl could not get a drop out of her. It was off to RCH straight away.
Peta had more blood transfused the next morning, followed by her scheduled chemo. While she was in day oncology I noticed that Peta’s speech had slowed significantly. I asked Carla, one of the nurses, to listen to her. Carla got one of the doctors to check her out, but the doctor said she was fine.
Peta seemed to be alright for the rest of the day. We waited the required four hours after treatment, then headed over to our room at Ronald Mac House to rest up. Just before we left, another doctor performed a neurological check on Peta. He was satisfied with the results, so we left, knowing we would be back the next day for more blood and a long day of chemo.
Half an hour later we sat down to eat in the dining area at Ronald Mac House and Peta broke out in a red, hot, prickly rash all over her body. We ate quickly and returned to the Emergency department to have it checked out. It turned out Peta had reacted to the Asparaginase used in the day’s chemo — apparently this was not uncommon. This meant a different drug needed to be used. Peta was given a large dose of Phenergan, and she was very dopey when we finally crawled into bed around midnight. Ten minutes later, the fire alarm went off. I tried to wake Peta but she was comatose. I was amazed that she couldn’t hear it! I gave up trying to shake Peta into consciousness and ventured out with all of the other residents in various states of undress. We were relieved to find that it was a false alarm: someone had been smoking in the kitchen. I could safely return to my sleeping girl, who was completely unaware that anything was going on. The next morning, she did not believe that she had slept through the fire alarm.
The following day at the hospital, everything went smoothly. There was no funny speech or adverse effects from the chemo. We had to stay one more night, then we could head home.
* * *
The day after, we had a clinic appointment with Dr Peter Downie, who checked out all of the ‘funniness’, then we finally got the leave pass to go home. We stopped for Maccas at Cranbourne and I watched as Pete struggled to put the straw in the hole of the drink cup. I said maybe we should go back to the hospital, but Peta was uncharacteristically agitated and said, ‘NO!’ She wanted to go home. Although oddly grumpy, she said she was okay; she just had a headache. We didn’t talk much on the drive home.
We arrived around 4.30pm and Pete went straight to bed. A couple of hours later, Peta came into the kitchen wearing half of her cardigan. The left sleeve was flapping around — she could not get her arm into it. I got her dressed and brought her a small plate of fried rice. She sat there staring at the food and the plate as though she had no idea what to do with it. A few seconds later she had a hand either side of the plate and was trying to scoop the rice into her mouth with her tongue. I couldn’t believe what I was seeing. After a few seconds, I asked her what she was doing. Peta looked at me and could not answer. I knew something was very wrong. I looked carefully into Peta’ eyes and slowly asked her if she knew what she was doing. She answered with a very confused-sounding, ‘No?’
I called the ward at the Children’s and spoke to the nurse in charge. I explained what was happening and, after a brief minute while she digested the information, her response was clear: ‘Call an ambulance.’ It is not that simple where we live. Our doctors are in Foster but the ambulance won’t take us there — it would be Leongatha instead. We did not want that if we could help it, but we would take it if
