childhood cancer

childhood cancer

Monday, September 26, 2011


It's Sunday night.  I have spent most of the day at the hospital with Luke.  It's so difficult.  The first consultant to see him at our local hospital said he could see an unwell baby who was trying so hard to be happy.  We obviously now know how unwell Luke is, and he seems to still be suffering from the infection last weekend (or from something else now!), but he is still trying so hard to be happy and smiley.  Today he has been great for periods, and then has just seemed miserable and fed up for others - and who can blame him!  It didn't help that he decided to pull his naso-gastric tube out this afternoon (again).  This means he has had to have a new one put in about four times in the last four weeks.  While it doesnt seem to hurt at all, he obviously doesn't find it a fun experience!

I had to leave relatively early this evening to come home and catch up on some of the work I have missed lately.  I am just about staying afloat in that respect, thanks primarily to the brilliant efforts of various colleagues, with a fair bit of late night working on top.  It is rotten having to leave Luke and Letitia at the hospital.  I know I have to keep on top of work, as the mortgage needs paying and we have a long road to go down with this, and while colleagues have been amazing at helping me so far, I cant expect them to do that much for a whole year or more.  I can see that finding the right balance with this is going to be one of my bigger challenges.

Anyway, off to bed.  Aim to be at the hospital before work, and in the office by 9.  Not sure quite how much sleep I'll manage to get - pretty anxious about bone scan results tomorrow, and obviously aprehensive about chemo starting in a day or two, even if part of me cant wait to get it underway. 

No comments:

Post a Comment