Thank you Sally, I appreciate your reply and that's exactly why I was stunned! We too have been dealing with this since 2004 so obviously we're not new to the whole situation. I have done extensive research (Binders) and am very well aware of how the NIH does things. I have followed and read every paper put out by Dr. Young. I too agree that he is the utmost authority when it comes to these blood disorders and why I was stunned with his simple reply. I knew going into this process that there would be a chance that he wouldn't be seeing my son, but I was expecting to at least be told why and perhaps given a recommendation other than "Continue on CsA". My son is already on and has been taking CsA for years mind you. So, that really went without saying; I don't consider that a recommendation.
It is precisely because of a protocol that Dr. Townsely had mentioned (dealing with Telemerse length) at the San Francisco AAMDS conference that we decided to initially contact NIH. Actually, there are two Clinical Trials that I thought my son "might have qualified for", one in particular caught my attention. But regardless, we're still trying to decide between a couple of treatments and BMT. Like I said before, my son's Hematologist and BMT Dr. are not in agreement and therefore are recommending different approaches. I was hoping Dr. Young could have put in his expert advice and shed some light on this. As for us, we're still stuck in the middle...I think it's going to have to come to "Us" making the final decision as to what our next step will be.
I am happy for you and that your husband is getting the care he needs. I was told recently that a patient on "Clinical Trials" is probably getting the best care possible as every minute detail has to be reported. So, that's a good thing.
We'll just keep trying and hopefully will come out with the best plan of action. I know that it sounds like I took it personally, but I actually did
We've been fighting for so long and I'm not about to give up now.
Thanks again and God bless