[milliken2]

Linda;
I am so glad things seem to be working for Al. I certainly know the heartbreak and pain in watching our hubbies decline. I, too, am thankful for each day I have with Earl, but am getting VERY concerned that his decline is more than just that.
He lost 17 pounds in 3 weeks. In June of 2011, he weighed 295 - needed to lose weight, but is now down to 189 - that's as of a week ago, and I am sure he is less now. His mouth is ulcerated, and it makes it hard for him to eat. Last week, we got 2 units of PRBC's and one 6 unit bag of platelets on Monday - got the same on Thursday - and then on Friday, got more platelets. When we went in for today's blood draw - his Hgb was only 8.6 - one tenth of a point aove transfusion level, and his platelets were 7,000 - so needless to say - he had another platelet transfusion today. It seems like we are living at the hospital. But - last week was the first time he got all 5 doses of Vidaza - this is the third session, but so far. no positive response that I can see.
I am in the process of gathering all records and sending them to both the NIH and to Dr. Sekkeres at the Cleveland Clinic. I talked to one of the research nurses at NIH - and she said they would have to get all the info there and then review it to see if he was even eligible for treatment there. And Dr. Sekkeres office said to send the records there too, so I am faxing 2 sets of notes, labs, and BMB path reports tomorrow.
Patti - glad Dean is doing well too.
Take care all, and know that my MDS family are always in my thoughts and prayers.

((((HUGS))))
Beth