This morning I took Caitlyn to a Jumping Beans class. We decided that the time has come for Caitlyn to start doing some social activities. So we booked her in, I checked whether they would be prepared to distribute a note about Bianca and the risk of chickenpox to the class and so on.
When we got there, Caitlyn went crazy. She rushed from one activity to another and generally had the best time ever. Until it was time for us all to sit in a circle and do a structured activity. She wasn't interested in clapping her hands to the music, finding her ears, wiggling her fingers (usually at home we have no problems whatsoever), but today there was no way she wanted to sit still while there were so many other really fun things to do. So we had a few moments. It didn't get much better because at one point she bumped into another baby and then pretty much just got over-excited towards the end of the session.
All I could think about was when we used to take Bianca to Tumbling Tots - a very similar programme, there was a little boy whose dad must have been quite exhausted after each session. He was one little bundle of energy. So throughout the session all you would pretty much hear is (let's call him Jake - no reference to any Jakes attending Tumbling Tots) "No Jake" "Come here Jake" "You cannot go on that right now" "Sit still Jake" and I remember sitting there wondering why Jake wouldn't just listen. So there I was today doing the same thing and I wondered what all the other mums were thinking. But of course the last time Caitlyn went to any structured activities was before she can remember. Of course there is nothing wrong with Caitlyn's confidence, it is just the group activity that didn't really appeal to her. So sorry Jake, I can't say I knew your circumstances and was perhaps a bit too quick to judge.
Of course the session also once again reminded me how very different our lives are in comparison to other people. It isn't just as simple as arriving, having fun, having a chit-chat and leaving until the following week. Going to something like this does take an awful lot of energy, forcing ourselves to give up the safety of our house and swapping it for a situation that could possibly be risky. There is very much still the worry that if Caitlyn had to pick up chickenpox or measles or something like this, that this would put Bianca at risk. And really our only way to try and limit the risk is to distribute a note to other parents to ask them to let us know as soon as they notice any symptoms. So during the session it was discussed, but then instead of handing out the notes, they left it on the table thinking people would take one as they leave. This unfortunately didn't happen and we'll have to discuss this again next week, because it is important that people are able to phone us.
Today I had a question whether Bianca is busy building an immunity against these type of diseases. No she is not. As long as she is getting chemo treatment, her immunity will be suppresed. Now there is a chance that she may have retained some immunity, but we won't know until the end of her treatment when they will do a blood test that will tell us which diseases she still has immunity for and which she doesn't. There is also a chance that she didn't keep any immunity, in which case, she will have to get all her immunisations all over again. So until we reach that point, we have to treat all these diseases with extreme caution. Not only could they be quite serious for Bianca, but if she did become infected, then she will also put other oncology children at risk.
At school today, one of the teachers (I understand not her own teacher) accompanied Bianca's class to one of the physical activities and on the way to the hall, Bianca fell. This teacher expressed concern that Bianca may have done this on purpose to get out of the activity. I would be quite surprised if this was the case. Certainly Bianca has never deliberately done something like this just to get out of an activity and certainly nobody has told me that she wasn't too keen on doing this activity. So this evening I emailed her teacher and asked the circumstances i.e. was the path slippery, was she accidentally bumped, was it possibly on an uphill? I decided to email her a list of the likely side effects because I know that drugs like Vincristine could be the cause why kids could possibly not be as steady on their feet. Fair enough it is possible that Bianca might not be able to keep up with the class when they do physical activities, in which case she may not enjoy the activities and then maybe she might be trying to get out of the activities (but to hurt herself - I don't know). I noticed this afternooon as school was nearly finished, Bianca and her friend was asked to go to the office to collect something. So they both ran to the office and it wasn't long before her friend was way ahead of her. Bianca gave it her all, but she just couldn't keep up.
Sometimes I wish this journey was more straight-forward. This is foreign territory for us and certainly for the teachers as well. And it is quite hard getting your head around this. I have to admit it is not that easy knowing whether you are dealing with behaviour or side-effect and there is a worry that the side-effects could indeed lead to certain behaviour by the time the treatment is finished. After all, we are not just talking a few months, we are talking years.
409 days to go, 409 days to go - I cannot wait to get to September 2009 (although it will most certainly come with its own challenges).