Terence and Bianca took the train to the city. From there they went to Te Papa - our National Museum here in Wellington. It is a huge and wonderful place and very interactive. Bianca especially likes the exhibits where she can press a button to hear animal sounds or people explaining about the exhibit. There are several areas specially for the kids where the kids can look under a microscope and so on. They also went to one of the special exhibits all about whales. There was a huge fibre glass whale heart that Bianca could climb in, she saw some whale skeletons and she could even touch a whale rib! They also had some ambergris that she could smell. A highlight was listening to the sound of whales in the elevators.
At Te Papa they also have a section called Story Place. This is a room where they have sessions lasting approximately 45 minutes several times a day. This is for children 5 and under. They usually have a theme and then tell some stories based on this theme. Here Bianca is listening to the story.
Then they had an interactive play area also based on the theme. Today's theme was "On the Farm". So Bianca could hunt for play eggs, she could feed a play lamb and so on.
She really enjoyed it. It was a quiet session and it was only Bianca and another little girl named Allie. Bianca had great fun playing with Allie and Terence shared our contact details so that we are able to arrange a play date at some point.
Afterwards on the way back to the train station, they stopped off at a park in the city and Bianca had some fun playing on the structures.
And then when they got back it was pretty much time for supper.
Today felt a bit like weekend and I expect it will feel almost like Monday tomorrow (except it will be Thursday).
Yesterday was exactly 8 months since Bianca was first diagnosed. And today exactly 8 months since our very first treatment and the day Bianca got her port surgically put in. 8 Months! I can hardly believe it.
Looking back it went pretty quick, but of course on the 6th of June 2007 when we sat there with all the documents and information about Bianca's diagnosis, it felt as if it was going to take forever to get to maintenance and all I could think of was how very much this felt like a 2 year prison sentence.
My mind kept racing, trying to find a shortcut, trying to find an easy way out. But there was nothing. No options but to push ahead - almost like being pushed from a diving board and all I could do was to keep going. I sometimes imagined that Bianca and I walked through this long corridor and we opened one of the many "doors" and walked through, I imagined the "door" slammed shut behind us and then we noticed that it was the "leukemia door". I sometimes wondered - what if we chose a different "door"? But of course if we chose a different "door" there was no telling what would have waited for us, maybe the same? Maybe something worse? Who knows?
Way back then I had all these jumbled thoughts running through my mind, trying to make sense of it all, trying to understand, trying to have a simple solution. But then very quickly we sat down and decided that we would take one day at a time, if we can run this race by just "taking one more step" then before we know it we would be able to look back and feel proud of what we achieved. It became important to us to "jump into a positive frame of mind", but also to try and keep things as normal as possible. That meant not treating Bianca any different just because she became sick, we would still expect good behaviour (of course the Dex is sometimes a bit tough), we didn't want her to walk this journey "feeling sorry for herself". We wanted her to still have fun.
Today was Day 20 of 84 of round 1 of our maintenance. Things do feel a bit more settled, of course things aren't as straightforward as it used to be, but it is manageable. And whilst this journey is a pretty tough one and probably the hardest thing we've ever had to do, it is an amazing learning opportunity. This road led us to some wonderful people that we would never have met if Bianca did not get sick.
Next week Friday (on our Day 29) will be a hospital visit as well as monthly Vincristine. And it will be interesting to see what her blood test results will be like whether they will have to adjust the dosage or not.
- Mercaptopurine - 1.5 tablet a night
- Co-trimoxazole - 6.25 ml twice a day