Hi everyone-it's been awhile since you've heard from me.  I'm taking over the blog entries while JT and I are in Cincinnati.  The funny thing is, we're not actually in Cincinnati as was the plan. 

Here's the skinny...

On Tuesday, three hours before JT and I were set to leave for Cincinnati for the two weeks of light therapy, I got a phone call from one of the Bone Marrow Attending doctors telling me that they were not ready for us for the therapy.  I couldn't believe my ears.  JT and I were all packed, our lodging for Cincinnati was all set and kind, willing babysitters for Justice were all in place.  The doctor said they were unsure as to when they would be ready, but to hang tight and wait for the Nurse Practitioner to call.  After the initial shock wore off I had to get busy making several phone calls, changing all those nicely made plans.

We still left that day at 3:00pm for Cincy, but just to go for the night and day for his regular infusions.  I was really hoping and expecting to find our more information about how such a debacle of a situation could occur, only to find that our main doctor was out of the country.  The answers I was expecting did not come.  Dr. Filipovich will be back at the hospital Monday morning and we have a conference call scheduled to find out just what all is going on and when the therapy will start.

This indeed has been a frustrating experience from many perspectives, but what's most troubling to Brian and me is that Jacob needs this therapy.  The hope is that once he starts the light therapy that we'll be able to ween him off the high doses onfsteriods that he's on.  There is a lot of literature that supports that this light therapy is the best treatment for chronic GVHD.  We're so ready to give it a try. 

So...I just wanted to let you all know that we haven't started with the therapy yet.  I'll blog on Monday after the conference call with the doctors and hopefully we'll have a lot more information.  Thank you so much for keeping us in your thoughts and prayers.  We're grateful.