Being Peta. Peta Margetts
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.
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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 we had to.
We put Peta in the car and headed to Foster, with Justine sitting in the back with Peta so she could keep her eye on her sister. Just in case. If anything changed we would call an ambulance. If we could make it to Meeniyan, the ambulance would take us to Foster.
Peta was mumbling, but Justine succeeded in keeping her calm as we drove. We made it all the way to Foster, even managing to avoid a large wombat on the way. Larry was already there attending to another patient. He went to work, quickly assessing Peta, who by this stage was terribly distressed. She could not speak, she could not move her left side and she was visibly terrified. So were Justine and I. It was incredibly concerning to see Peta like this and we had no idea what had happened.
The attending nurse tried to access Peta’s port for IV antibiotics, but to no avail. We knew all too well how tricky it was. Thankfully, this nurse had a ‘one go’ policy, as she did not wish to cause any more distress than was necessary. Larry cannulated Peta’s arm instead, and all I could do was let her squeeze my hand as hard as she wanted. Her distress was made worse by the fact that she could not tell us anything. She had absolutely no idea what was happening to her and was very afraid.
I did my best to allay her fears while Justine followed Larry out of the room and he quietly confirmed what we had suspected — that Peta had suffered some sort of neurological episode. Larry had called for a chopper to take her to RCH. We had been home less than four hours.
The chopper wasn’t available, so an ambulance was coming from Wonthaggi instead. We waited for what felt like hours. I could see that Larry was worried; he kept scratching the stubble on his chin in the way that men do when things just aren’t right. Thankfully, by the time the ambulance arrived, Peta’s symptoms had begun to subside. I found it difficult to send her off in the ambulance alone, but I knew she would need her bag of stuff. I suspected we would be in Melbourne for at least a few days, so needed to pack. Peta was in very good hands with the ambos. It was now midnight.
Jud and I dashed back home. I threw some clean stuff in a bag and headed for Melbourne, leaving Jud with only two stressed dogs for comfort. I was relieved that it was a clear night and I didn’t have to struggle with fog as well as with my emotions. I arrived a few minutes behind the ambulance as the emergency staff settled Peta in the treatment room. The doctor came to assess what was going on. Peta got some sleep thanks to a combination of drugs and sheer exhaustion. I sat next to her all night. Our nurse kept me supplied with tea to keep me going. This was the most terrifying thing I had ever experienced and I dared not sleep. I knew none of Peta’s sisters would sleep either.
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At 6.30am, I called Peta’s father in Queensland. He was shocked that such a thing could occur. Later that morning, Peta was moved to the neuro ward. Initially, Peta was in a shared ward with a perky girl of about thirteen who had been in hospital for many, many weeks. Peta enjoyed the chat, even if she wasn’t very good at engaging in conversation herself. Our doctor, John, was on call today and as much as he was concerned by what had happened, he was also fascinated. John said this side effect only occurred in about one percent of patients. He had no answers for us and it would be the neuro doctors who investigated