Testing Times......to +53

Following a hectic week, Saffy is back to feeling well and all the blood tests were negative - the good luck's still with us.

The slump in her Hb level had caused nasty pressure headaches if she bent over (troublesome if you still need your bottom wiped for you) if she jumped (Saffy's favourite way to move around) or if she moved at speed (although it should be said that Saff speed isn't very speedy!). The headaches disappeared a few hours after the transfusion and haven't plagued her since. At least we now have an early warning signal should this happen again.

The local hospital were very thorough in searching for a reason for Saffy's falling iron level, and although it lead to a nervous 24 hours, we've learnt about haemolysing and that it can be treated should Saffy succomb. It occurs in up to 50% of post bone marrow patients and is caused by the compromised immune system. It is treated with steroids. GOSH believe Saffy's level fell simply because her marrow is immature. Her Hb reading only went up to just over 7 after the transfusion - it should be between 11.5 and 14.5 - and although it seems to have temporarily stabilised we're expecting further transfusions.

Saffy's very mild rash seems to have disappeared, the hospital have lowered her cyclosporin levels so perhaps it will make another appearance but we're seeing no other signs of lurking GvHD (said with everything crossed whilst touching wood).

Although still happy to be home, Saffy misses the routine of her old life, she talks constantly of playgroup and the other children at her childminders. The playgroup have been fantastic and are now sending a teacher round for 2 hours every Tuesday and Thursday, to give Saffy a chance to make and colour things with someone who can actually draw. We're continuing to encourage all our friends with children to drop in, but with the good health proviso in the middle of winter our cancellation levels are expectedly high.

Sorting out getting all of the medications, dressings, syringes etc. is a complete pain. It's not that anyone is being obstructive, there are just too many people to talk to in order to get things organised.

I have to say that yet again our daughter's ridiculously sunny outlook is making life much easier for us and herself. Long may she stay the happy little soul that she is.

Thanks to all of you continuing to follow our journey, particularly now it's getting less dramatic (and our reporting has slowed down!)

Take care

Sonja