I used to think if we could just get through today, then we'll be okay (and we were) and the next day I would hope to "just get through today and we would be fine" (and we were) and before I knew it we settled into some kind of routine. A new normal. A different world which probably seemed quite chaotic, disorganised and unplanned to the outside world, but a world that we learned to find comfort in because it became familiar. At that point my goal was to get to Maintenance (which was after the first 6 - 7 months of intensive treatment). I didn't think beyond that because the end date still felt so incredibly far away. So when Maintenance arrived at the start of 2008, I could finally say "next year we will be done with treatment". It sounded so much closer than saying "in two years we will be finished with treatment" and then at the start of this year I suddenly realised that we would finish treatment "this year". It didn't feel real, it felt a bit weird I have to say. And look at us now, here we are and finally I am able to say "we will finish treatment next week". Not "in two years", or "next year" or "this year", but "next week".
I keep telling Bianca that by next week Saturday she won't have to be timed after supper to get chemo after 2 hours on an empty tummy, but I don't think she really realises what a big milestone we will have reached. I don't think she is able to imagine her life being any different. Of course initially she'll still get her Acyclovir every single day and her Co-trimoxazole every weekend and she'll still have monthly hospital visits for now and some IVIG transfusions, so in that respect things won't really be any different, but for once she'll be able to eat supper beyond 6pm if she wanted to and if she was still hungry at 7pm she'll be able to have a snack or that glass of warm milk at bedtime if she feels she won't fall asleep easily. We would be able to go out for supper as a family without trying to figure out how to do this around our chemo schedule.
And tonight, with only one more week to go, we've reached a wonderful milestone - our very last day of steroids (Dexamethasone) (hopefully forever). Of all the drugs we hated this one the most. Of all the drugs, this one had the most side-effects for us or I should rather say, the most visible side-effects. It was the drug that caught us completely off-guard and by surprise almost instantly in the beginning.
I'll never forget sitting in the hospital and all she wanted to eat was Salt and Vinegar Pringles. So I'd give her a few and she would gobble it up and beg for more. I'd sigh and say "okay, only 5 more, then no more, you've already had about 20". I felt so guilty because we had to write everything down that she ate and "what would they think if I feed my child so many Pringles?"
Of course the nurses and doctors didn't really think anything funny and we soon learned that it didn't matter what we gave her, as long as she ate. The doctors even suggested we add cream to her cereal and milk or use butter instead of margarine because the calories were so very important. And so since then I didn't feel guilty if the only thing she would eat were Vegemite Sandwiches (and eating nearly a whole bread on steroids mind you), or even chicken nuggets from McDonalds. In fact we were given a different menu in the hospital (different to the standard boring "kids won't ever eat that kind of stuff" menu) and if she wanted bacon and eggs for supper, she was able to order that (which she did, over and over and over).
I'll never forget the first time we were sent home and she was on Dex for around 28 days at the time, she would eat a massive big meal now and literally 5 minutes later beg for food because she felt "so hungry". She would wake Terence up at 3am and he would have to prepare a whole big meal for her because she had this never-ending hunger. So then we figured we would leave a snack pack next to her bed after she fell asleep so that if she woke up in the night she could help herself. One night I made the mistake of putting it out before she was properly asleep and she instantly got up and gobbled it all up, almost as if she hasn't eaten in a week. And then when Sanna came she was totally freaked out because she could hear a mouse somewhere in the house and it sounded as if it was right in her room, later we figured out it was Bianca waking up in the night and eating her rice crackers in her snack pack. And let's not forget about the time when Bianca craved wild boar like they have in Asterix and wanting to send her dad out at 9pm to go and buy her wild boar. In hindsight we should have rather let her watch Garfield, because lasagne is so much easier to organise than wild boar. And apart from the eating and big appetites and weird cravings, there were the emotions and clinginess and tummy aches and grumpiness to deal with. So yes, we are not very fond of steroids.
Tonight Bianca took her very last 3 tablets of Dexemethasone and it couldn't come soon enough. This week she was definitely more emotional / sad than the month before. She was definitely less interested in things like homework or playing and more clingy, with tonight probably the worst where she kept insisting we sit next to her the whole time. She complained of tummy ache tonight and was almost in tears when she needed to eat supper, complaining that she wasn't feeling well.
So yes, when Bianca finished supper and popcorn and hot chocolate around 5:50pm, it was with a wonderful feeling of relief that I gave her her last 3 tablets of Dex.