The last couple of weeks have been good. The Tumour noticeably decreasing in size, John's photosensitivity decreasing to the point where most of the time we are not seeing out son hiding behind his sunglasses (cool dude !) and his eyelid opening again. So some very positive signs.
His blood counts have been good and last weekend we were particularily on temperature watch with his counts being at the point where they were dipping. He got up to 37.5 but dropped back down to a constant 36. This constant alertness is something my wife is finding hardest, with the concern that any moment we could be going back to the hospital to have some infection treated.
This morning the focus is hair. My son came into our room holding a bunch of hair saying 'look what I can do !' He is excited about it at the moment so that is good but for some reason this is getting me more than I expected. It is a sign of the harder parts coming when the last couple of weeks have been highlighted by how quickly this Rhabdo is responding, so trepidation is where I am now.
The fun side of it is that my time is coming... the razor is heading my way soon and my full head of hair is also coming off. At least in these temperatures, I will be a bit cooler.
He has just walked in, to where I am working, with great lumps missing and whilst it is the same cheeky boy as last night, the tears are starting to fill my eyes. Funny how when you think you are getting a bit hardened to all this, something as expected as this can set you back.
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