Being Peta. Peta Margetts
since Peta’s diagnosis. ALL is all about numbers. The numbers indicate how your body is: haemoglobin, platelets, neutrophils, these three things were the most important indicators. When you are on chemo, those things can change overnight. I made sure the car always had a full tank of petrol, as we never knew when we would have to grab a bag and go to Melbourne or to Traralgon. Emergency situations happened just like that. Every time we pulled in to the RCH car park, Peta turned her nose up at the smell of the city. She had always had a keen sense of smell and this was heightened by the chemo. Her reaction made me laugh every single time.
By now we were regular visitors to Ronald Mac House, a place we were very grateful for. Prior to Peta’s illness we had never supported McHappy Day, but that had changed for us now. I was so grateful for this facility. It became our home away from home; and while it wasn’t home, it wasn’t hospital either, which was important for Peta. Depending on whom I had spoken to in the office, we often had a downstairs room. That was so much better for Peta, as Vincristine gave her terrible knee and ankle pain. This told us that the drug was hitting the spot, as blood is produced in the marrow in your joints. Climbing stairs was far too difficult for Peta when her body was reacting as though she were in her veteran years.
We now understood the science of chemotherapy a little better, and knew that a large part of treatment was preparing the body for the hit of chemicals it was about to receive. Peta had a course of Prednisolone to help protect her organs from the effects of the chemo and she wore a big, round, rosy face as a result. Diabetes can be a side effect of steroid treatment as it makes you ravenously hungry but, thankfully, Peta was spared that complication. Six weeks into treatment, things were becoming more intense. The transfusions were more frequent, making neutropenia — a decreased number of neutrophils, which help protect the body against infection — more likely. This meant that infections were now more frequent, too.
October began with Peta having an early morning trip to theatre so a port could be attached to a major blood vessel. This would make the frequent delivery of her chemotherapy much easier. The procedure was done under a general anaesthetic and, as a special three-for-one deal, she also had a bone marrow aspirate and a lumbar puncture. This was routinely done to make the delivery of the chemo more comfortable and to alleviate the chance of veins collapsing from such regular access. The ‘comfortable’ part was an interesting notion — having someone drive the equivalent of a four-inch needle into your body on a regular basis was far from comfortable. Peta’s port was located right on the bra line, just on the left breast, which was a plain nuisance much of the time. Every time she rolled over in bed the thing seemed to roll as well, which was a very strange sensation. Pete decided she was going to need some new pretty bras from then on. Who knew who was going to see them, and a girl needed to be presentable as well as comfortable.
Peta’s port was inserted without any problems, and she was safely returned to the third floor to recover. She came out of theatre with the port accessed and ready for her dose of chemo, but late in the day our doctor, Peter Downie, came up to chat with us. He had come in on his day off and explained that there was something extremely unusual between Peta’s twelfth and thirteenth chromosomes. This was the first time we had any inkling of Peta’s genetic uniqueness — she was B cell and only five percent of patients are B cell. The doctor thought we should go home and return the next Tuesday, as some more in-depth discussions needed to take place. The good news was that Peta was now in remission.
We were given the ‘okay’ to leave. The only trouble was that Peta had an insuflon in her stomach for administering chemo. No-one thought to remove the needle, so Peta endured a sharp sting in her stomach over four days. By the time we returned to the hospital, the spot had become very painful. Needless to say, Peta was happy to have it out. I was taught how to inject Peta through the insuflon. For the first two or three injections I didn’t know who was more afraid: me or her. I had never imagined that I would need to do this sort of thing — it was hardly in the mums’ manual. Peta insisted that I wear my glasses for this procedure, and rightly so, as the spot was miniscule. Peta’s new port proved right from the start to be extremely tricky to access and seemed to sit very deeply. Because ports are not firmly attached, they can move around until enough scar tissue builds up to help stabilise them. Even our very experienced day oncology nurses, who could almost access ports in their sleep, cursed the wretched thing for a while, but they mastered it soon enough. On one occasion, the port seemed to have flipped over. It wasn’t until Peta was out of it in theatre that two of our nurses, working in tandem, successfully accessed it.
In the days immediately after the initial diagnosis I had said that the best thing anyone could do for Peta would be to buy her a new bed. Peta’s bed was totally past its use-by date, and well and truly ready for the tip. Her friend Michael took that request to our school principal. The school community rallied around and quickly raised the funds.
Late one Saturday afternoon, Pete and I returned home to find her bed on the front porch. Soon after, Bronte and Claire and her brother, Ross, knocked on our door, ready to install a new queen-size bed, complete with all new linen, pillows, doona and, as an optional extra, waterproof lining (just in case). Ross, Claire and Bronte had encountered a day of disasters getting the bed to our door. There had been numerous problems and delays, capped off by a flat tyre in transit. While all this was happening Justine had taken Peta to the movies in order to get her out 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.
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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