Update 28/5

Another week with minimal medication and no steroids since Wednesday; the induction face is finally complete.  As a result Wotsit’s appetite is subsiding, along with his cheeks and tummy, and he continues to be a little more active, which is so lovely to see.

Unfortunately the results of Wotsit’s MRD test today puts him in the ‘risk category’ (they’re not allowed to say ‘high’!) of the leukaemia recurring.  The stats, for those who like them, are a 30% likelihood of the leukaemia coming back.  All this means is that they change his ‘consolidation’ treatment plan with the aim of significantly reducing these odds (back to under 5%).  So, we are switching from Regimen A (the 3 week walk in the park I mentioned last week) to Regimen C, a 10 week much more intensive treatment plan.  Naturally we’re disappointed, as it will mean a much tougher time for Wotsit.

It will also mean that he is likely to be neutropenic again in the not too distant future.  Coupled with a) the number of medical appointments and b) how he is likely to be feeling, I think it is unlikely he will make it back to school (at least in any consistent way) for the remainder of this year.  So, I will need to up the ante on the home schooling!

A few people have asked what the overall treatment schedule will be.  We think the future looks something like this, but don’t hold us to it:

-          Consolidation phase – to end July (camping in France is looking pretty slim!)

-          Interim maintenance phase – to end September (yay, we should get to celebrate Wotsit’s birthday at a time when he’s feeling pretty good and hopefully get him settled in Year 1)

-          Delayed intensification – to end November

-          Maintenance phase – to end November 2016 (I promise not to send weekly updates, every week, until then J)

Hope all is well with you all.

xx