About 10 days ago it was time to embrace the dreaded steroids and chemo. The experience for Francesca was, this time, far from pleasant (much worse than usual). She really felt the side effects full on and suffered with chronic stomach cramps and everything that goes with that. Stuart and I were sitting up with her in the middle of the night as she tried to get through it. Her mood swings weren't so chronic - we think she simply didn't have the energy. After speaking to the symptom care team at GOS it looks as though they may in fact change the steroid that she is taking which should mean these side effects are at the very least lessened and at the best gone. Along with the bad tummy she continued to have some aches and pains in her legs and hips. We are awaiting an MRI just to check that her bones are all ok - once it is confirmed that everything is as it should be we will be referred to a chronic pain clinic at GOS to try and make the next few months a bit more comfortable for her.
The good news is that despite the above she has only missed 3 days of school so far this academic year - hurrah! We are so pleased. Francesca is loving being at school and goes to one after school club - Dance (surprise surprise!) Although she missed over half of her schooling last year she is doing really well and working hard at her reading and writing. In fact we had a card sent from one of the teachers at school sent home today that told us how well Fran is doing and how hard she is working. It is so great to know that she is happy in her class and loving school.
Charlie started 'Monster School' (Busy as Bees really - but he likes Monster school) and is settling in well despite a rocky start. He goes two mornings a week and it is doing him the world of good. He chats away like a good one although it does mean that he now has the vocabulary to tell me exactly what has been going on with his big sister and what she's been up to!
This Wednesday just gone we were up at Great Ormond Street for Fran's lumbar which went really well. It is incredible to see how much Fran has become used to her treatment (a place that I never expected to find her in). She was really looking forward to the GA as she likes the 'shivery feeling' she gets when going off to sleep. It is also fantastic because rather than waking up distressed from the general the only things she needs is her family and food (not necessarily in that order!)
We are 2/3 rds of the way through treatment - Wow - what a road to travel with just a little bit left. We are so proud of how Fran is handling the whole thing. The other day she asked me when the leukaemia would be gone and it was good to be able to reassure her that it would all be over in Spring next year.
Photo's will be posted over the weekend!
Friday, 3 October 2008
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