After Caitlyn's morning nap I decided to take advantage of Bianca's relatively high neutrophils and so we went to North City Shopping Centre close to us. They have a Father Christmas there at the moment and every day he sits on his chair by the most beautiful display of a huge Christmas tree, wrapped presents, and so on and you can then get a photo taken. So Bianca and Caitlyn got to sit on his lap and we managed to get a photo taken. Caitlyn was quite amazed, but then became quite overwhelmed and so I had to take her off pretty quickly. Bianca then had the opportunity to ask Father Christmas for something for Christmas. Of course we've known for a while and (lucky) she hasn't changed her mind as yet.
The rest of the afternoon Bianca wasn't much interested in doing lots of stuff.
Had a question about what type of ALL Bianca has and from what I can see on her treatment plan it says "AALL0331 Standard Risk B - Precursor Acute Lymphoblastic Leukemia", Bianca is classified as "Standard Risk - Average ALL". We are part of a clinical study and it is slightly more intense than just the usual standard treatment for ALL - we are on the IS arm. Pretty much from the start we have been getting weekly treatments and during the intensive period (June to December 2007), most of the weekly treatments are given at hospital. In the previous two phases we also had Mercaptopurine which we had to give over a period of time every single night at home. That was also a chemo drug. And then we also have Dexamethasone which is a steroid and currently two types of antibiotics (the one is every night and the other 3 times a week).
So we run our lives pretty much according to Bianca's medicine schedule. It will feel very very strange one day when there are no more medicines to be given.
Tonight Bianca wanted to play "restaurant" at home. So Daddy had to write a menu with some supper options, she insisted on having her table and chair set up in the play room. I had to be the waiter and Bianca underlined the items she wanted. Terence wrote "pasta pockets, mince, cheese, pumpkin, water, milk, chocolate milk" (Guess which one Bianca did not underline...). I then had to go and tell the "chef" what Bianca wanted to order.
We have enrolled Bianca with The Correspondence School. She is with their Early Childhood Programme. Basically they send us some activities, music, puzzles, books and so on based on her interest and a learning plan and then we do these things with her at home. It is important for me to be able to give her activities that are interesting, challenging and will prepare her for school. One of the books is all about Fairies, and the books says that you leave the fairies some milk and a note "help yourself fairies" and then they come in the night and help themselves and that makes them very happy. So today Bianca asked Sanna to write "help yourself fairies" and then Bianca looked at the words and wrote it on her own piece of paper. She insisted on baking some cupcakes for the fairies and left a glass of milk (and the fairies will be so grateful that they will leave some chocolate coins for her).
Bianca wrote the note herself. She still battles with "S" from time to time, but all the other letters seem to be easy enough. She only writes in capital letters at the moment, but at some point in time she will start being interested in the lower case letters.
She also has some other activity books where you have to circle the odd one out or choose one that is different and so on and she is pretty good at getting it right.
Bianca tried to write the "1", "2", "3".
- Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
- Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
- Fluconozole - 10 ml at night