And we are still at home

Bianca is doing pretty well. Earlier in the week Bianca started chemo. This is the beginning bit of our maintenance treatment and it is expected that she will get treatment until 2 years from the first date of this phase which is called "Standard Interim Maintenance". This phase will last 8 weeks, the next is called "Delayed Intensification" and then "Standard Maintenance" and it is the "Standard Maintenance" that will be repeated for 2 years until the first date of the "Standard Interim Maintenance". So providing no delays and no problems or setbacks we are hoping to complete her treatment by September / October 2009. Of course none of the dates are fixed and these phases are often count dependent, which means that her levels need to be at or above a certain level before moving on. Of course afterwards she will still need regular check-ups and blood tests and I presume this will be an ongoing thing going forward.

On Thursday we had to go in for a blood test and they just do a finger prick and then squeeze a little bit out which they then test. Bianca did not even cry and was happily playing with Kate, the play specialist, while Jo did the finger prick. Jo is one of the nurses, but only works with day cases and not admissions. Bianca calls them "Playing Jo" and "Playing Kate". There is also a Nurse Kate.

They realised her levels were actually too low and they shouldn't have started the next phase. They need to allow time for her levels to recover before starting a new phase of chemo. So we had to stop the chemo. We continued with the 5 days of dexamethasone. This is a steroid and not a chemo drug and a side effect is that it boosts her appetite. The first time she went on this we were not at all prepared, but soon realised that Bianca would easily eat as much as an adult and then an hour later would be hungry again and then she would be up at 3 in the morning wanting food to eat. At that stage she was on it for 28 days. This phase, she is on this for 5 days (today was the last day) and then again 5 days later, so we did not feel the effects as bad as the first time. We are due for another blood test on Monday to see if we will continue chemo on Tuesday.

Here is Bianca just after we arrived at the hospital. My mother made her this beautiful beanie, mitten and scarf set making Bianca look like a cat (she loves cats and one day we will have to get a kitten).

We were waiting for Jo in the treatment room and Bianca loves playing with the train. You can see the train at the top (top left).

Jo and Bianca had to choose a finger for the finger prick.

Bianca and Kate played some games while Jo did the finger prick.

Bianca also had to have a blood pressure check, and she loves pressing the button herself.

They usually check her temperature with every visit, but Bianca decided Kate needed hers checked first.

On Thursday night I went to the local shopping mall as it was late night shopping. Now that Bianca is sick, I try to avoid going to shopping malls with her. I had to buy some more clothes for Caitlyn as she is getting too big for a lot of her current clothes. On the way back I felt pretty sick and that night had a bit of a gastro. So the next day I felt really bad as I did not sleep very much the previous night and I felt cold and sore the whole day.

On Friday night Terence was invited to go and play poker at his squash club. It is not serious or anything and more about the socialising. And basically all the players would pay an entry fee (they then all get the same amount of chips) and the winner wins the full amount. The squash club provided some snacks and people could buy drinks. So it is more to attract people to the club and to enable the players to get together and have some fun. Terence was doing pretty well until almost at the end when he started feeling sick. So it turned out he got my bug and in the end had a pretty rough night.

Today I got a nice surprise. I received a parcel that the post office delivered this morning. They actually came yesterday, but at the time I was lying down and had no energy to answer the door, so they just left a card in the post box saying they were there and that they would deliver again on Saturday. So they came again today.

It turned out that it was a Cross Pen that I won. Wow, I don't think I ever won anything before. This was because I recently submitted a letter to a newspaper. At the time there was a news report of a little girl who was subjected to terrible abuse like being spun on a washing line until she fell off, dumped in an ice cold bath and then put in a tumble drier with the drier turned on. I was absolutely horrified, so wrote about my sadness and disgust that she had to die at the hands of these horrible horrible people.

Later in the afternoon, Terence took Bianca to the Johnsonville park and she had great fun playing on the structures. During that time, Caitlyn and I went to Spotlight. This is a big shop with all sorts of craft and needlework stuff. It also has some houseware stuff like curtains, sheets, rugs and so on. I decided to try out knitting. Just for fun. I don't think I will become really good at it and I don't think I will end up knitting stuff for a living, but I'll make a few things just for fun. At the moment I am trying to knit a skirt for Bianca's teddy. I found a pretty good book dealing with all the basics and then more advanced stuff and this pattern is in this book as one of the basic patterns. So I'll see how long this hobby lasts.

On the way to collect me from Spotlight, Terence stopped at Khandallah (close to Johnsonville) and took a photo of the view - isn't it just beautiful?

Caitlyn is quite mobile, although not crawling on all fours as yet. She is still dragging herself along the carpet, but gets from one side to another pretty quick. She loves banging things now to see what would happen and would especially try this out when she is sitting in her high chair. I usually give her her own spoon to play around with. She really loves solids including small pieces of toast and tonight she ate a whole jar of pasta bolognaise. Of course you have to pretty much give her a bath at the end of it, but she really enjoys it. So far we have only had 2 types that she really did not enjoy, but otherwise, she is pretty happy to eat what we offer.