Well we are still here! We are still talking to our Insurance company, they seem to be holding tightly to their money and we are calling anyone we can think of to make them see the light and honor their contract with me - as we read it. 
So just to say, we should know in the next week or so whether or not we will be able to go to NY and get the transplant at Sloan Kettering. If not we have been talking about a plan B and C, so there are still avenues to go down however B and C do not aim at a cure. I am still trying to get some concrete statistics from Dr Koehne in NY. It seems that one of the big risks with the T-cell depleted Allo is risk of infection which is very high because of not having T cells or fighting cells. And they don't put any in for 5 months! So the high infection risk is for a long time! Also the writing on the wall seems to be saying that 4 months in NY could easily turn into 6 as they don't like to let people 'out into the world' without those T cells.
As you can imagine I've been really enjoying my time with Sophie and James. James really doesn't understand what is happening but he is so funny these days and his personality is blossoming right now - I hate to miss it. I'm hoping he gets to liking Skype a little more than he does now. Sophie understands a lot and asks me not to go away to New York sometimes. It is a crazy life we find ourselves in for sure.
I could go on and explain all the many stressful details we have been dealing with since last Thursday, but instead...I think I'll have a beer!