We met with a couple doctors today and learned about the mass Terry has on his adrenal gland. We picked up our schedule when we checked in and found that we have appointments thru the week as normal, so that was our first clue that we were not going home next week.

The biopsy reports are not complete, but it is looking like they have enough info to know that this mass is something caused by the transplant. It is common for patients who have had other types of transplants, but it is the only case they have had with patients with this type of transplant. They know how to treat it for those other cases, but we are throwing them a curve. The first thing to do is to change the dose of the Cyclosporine meds so that his body can help itself fight this thing. The Cyclosporine helps keep the GVHD away, so we are to be on the look out for any of those symptoms.

The term for this mass is Post-Transplant Lymphoproliferative Disorder (PTLD). It is a form of or related to Epstein Barr Virus (EBV). It is treatable, but has been treated with Rituxan, which Terry is allergic to. They want to wait to get all of the lab results of the biopsy and meet together to make sure they have the right plan of attack. The many doctors involved will meet Wednesday and then let us know what they come up with.

There are a lot of if's given us right now, and we could go on with what might happen, but what we do know is that we will be here thru next week and probably 2 to 3 weeks longer. But even that is ify and we'll just take it as it comes. My biggest concern was to be able to attend the wedding. We told them that we really wanted August 10th free, but would be here before and after as needed. They've got it on their calendar and we feel comfortable with that.

So, for now, we are playing more of the waiting game.

We are keeping ourselves busy though...
Chase, Connor, Marco and the Bishop came to visit us today on their way home from the Priest Quorum Super Activity, which was crabbing on Camano Island. We are so glad they stopped by - it was good to see them.
Thomas, Dana, Auger, Ariel, and Drew came to visit. They ate and let us watch Auger while they went to the game. Our treat! What a joyful time. Auger was great, we enjoyed the evening and he went down to sleep without any problems. We'll continue the good times tomorrow.
We've visited with several of the kids on the phone or by email and it's been a busy day.
It's not yet over - dishes to do :)
Have a great night!

Oh! PS, I guess! We visited briefly with some other transplant patients here at Pete Gross, who had the same transplant as Terry (or similar enough) and they were going home Monday, until he got a bacterial infection. That was disappointing to them, but we agree that we are in the best place for these types of things. Funny though - she mentioned that "it's just like Hotel California; you can check out, but you can never leave!" AHHHH! Funny huh!