Ok. Lets get into the nitty gritty. The MRI sowed a reduction in the size of the tumour by approximately half. It was 40mm by 35.7mm. Now ot is 27mm by 24.4mm. So we should be happy right?
Sorry to say i am not. Dont get me wrong, the radiation has shot this tumour in the guts. But radiation is the only known treatment to work against the tumour. The 6 weeks was of daily radiation ended in november...
Now we remain on the trial chemo drug called vorinostat. I asked the doc what the drug was expected to do. He said he didnt know - thats why it is a trial. All he could say was that the dose should be safe. I didnt get much comfortfrom that!
Further, charlotte couldnt poke her tongue out straight during observations today. Rachel also reported that charlotte complained of feeling sick in the mornings before brekky and wasnt eating very well at all. These are both new symptoms We have been told to watch closely as this could be a change for the worse. The worst thing is that the tumour may affect her ability to swallow. This is absolutely devastating to think about right now.
So, we hope that the new symptoms are temporary - maybe a bit of swelling that will simply go away by itself. Or swelling that is controlled throught that most evil drug - the steroid.
I cant bear the thought..
Anyway, I pick her up tomorrow morning and look forward to chrissy. I have laid a little sand pad and started the preparation for a shaded area... Santa told me charlotte wanted a pool! I think a pool should be a great relief for her, particularly as this progresses so i bought a 5.5x3 a Bove ground pool which should be perfect. Obviously the donations i have received have assisted me to get the pool,shade cloth and a pool blankett to keep it warm. Now i am just under pressure to get it up on monday before thw big day! I am sure it will be like putting together an ikea table...easy!
