It's hard...

Wotsit's back from his short stay in hospital - 5 days in all.  In himself, he was never anything other than a little under the weather.  Which made staying in a 10 by 12 foot room for 5 days reasonably challenging!  He missed his brother passionately (Pickle popped in on Days 3, 4 & 5) and the feeling was mutual.  Tough going on hubby and me as you don't see each other and you're never quite sure how long it's going to go on for.  Missed out on an evening with new friends too.  And whilst our overwhelming priority is to get Wotsit well, it's hard to miss out on the fun times.

Now reasonably back to normal (except for appetite remains suppressed and he is losing weight - currently down to 18kg) although Wotsit's missing the last few days of term as his neutrophils are currently 0.0 so no immunity to speak of.  The low count also meant that today's lumbar puncture was postponed to next Tuesday.  Not the end of the world but hardgoing as it means we are still unsure about what the next treatment phase will entail (as it depends on the results and - if we participate in the clinical trial - which route he goes down).  Planning our summer is proving tricky...

It's hard to know whether we should participate in the trial or not.  The trial would mean that in the next 8 week phase, Wotsit would have more intensive chemo that would require 4-5 days in hospital every fortnight.  There goes the summer holidays and Wotsit's 5th birthday... But, as part of the trial, there is a chance that in the maintenance stage (lasting 2 and a half years) he wouldn't have to have a lumbar puncture every 12 weeks and possibly no Vincristine (our least favourite chemo drug but not all that bad) or steroids - I'd give quite a lot for Wotsit not to be on steroids! My gut feel, driven primarily by my head, is that we opt for the trial.  I think it would give Wotsit the best quality of life during his treatment.  However the trial is randomised so we may not get that option anyway.  So, I guess we need to go with the flow - whatever will be, will be...

Reading this back, I've used the word 'hard/tough/challenging' 5 times in 3 paragraphs.  Think that probably says something about where we are right now.  It is hard.  BUT it is also fine.  We are together, Wotsit is relatively well and our children are gorgeous.