Update...........

It's been a LONG and emotional week. I had the first "real" transplant consult of several, and it went good. I listened, I asked questions, I kept it together.....then Hilary and I went to 300 east and decompressed as we drank several glasses of wine. Hilary is my sister-in-law, she is married to my step brother. She and I have always gotten along great, but recently (over the past couple of years) we have really connected. She tries so hard to understand what we are going through. She is such a great support.

Speaking of "going through".....I met with Dr. Gilman for about 3hrs last Tuesday. He feels very confident that he can do this very complicated transplant, and be successful. He is not an expert on FA, but his is an expert on GVHD and T-Cell depletion. He is also an expert on Asplastic Anemia unrelated donor transplants. He likes to take more of an European approach and has worked with Dr. Boulard at Sloan Kettering. I didn't feel like it was a sales pitch as I was talking to him, but rather that he was a very caring and confident doctor who wants to save my son.

He has some interesting things to say about haplo-identical matched donors (half match). A lot of things to take in, but all very interesting.

The one thing that really stood out was Will's chance of survival. He has a 70% of survial with a 7/8 donor. That really just doesn't sound all that great to me. Like I said....a lot to take in.

We are going to Cincy next Sunday, and then hopefully NY in about a month. I really need to make a decision as to WHERE, then the WHEN will follow.

I am such a mess right now. I have my support system here, but I really feel so alone. I feel helpless and unsure of the future.

I keep telling myself that God will get me through this, and I know he will......but it's still hard.

Still Scared......

Counts seem to be dropping. I have increased his androgen over the past two weeks, and so far there is no response. It may be to soon to really tell, but my heart tells me it's not going to work. There is the option of tying a different androgen....but would it really matter? I don't know.

I am a mess right now. Scared for my son's life. Scared of making the wrong decision. Scared of not being able to provide for him. Scared of not being a good mom. Scared of everything.......

I wish I could just wake up from this nightmare and find that it was all just a dream.......