Day +35

It has been a few weeks since a post.  We are still in Boston and Doug is still at BWH fighting the Germans.  When I last posted Doug just found out he had mild GVHD of the liver.  Quite a bit has and has not happened since then.

The GVHD of the liver is all but resolved.  Doug's liver markers are back to normal and responded nicely to the steroid treatments.  It was not a fast process, but as of today they are officially all in normal range.  Great!  He started IV nutrition again last week as the liver started to show signs of recovery.  He has been attached to his bag of white wonder 23 hours a day since.

While the GVHD of the liver seems controlled, he had a procedure done on the 5th of July to determine why he has been having vicious diarrhea and continued nausea and vomiting.  The results showed more GVHD, but this time of his Gut and this time severe.  The doctors immediately started him on a host of new immunosupressants to once again try and beat down those German cells.  So far, it seems the cells are fighting harder than the drugs.  The doctors said that it could take up to a week to work.  Tomorrow marks a week, so we are hopeful that he starts to get some reprieve.

Another wonderful trait he has had to deal with is cankles.  His weight as of today is 175 lbs. You might remember from the last post it was 163lbs.  While it would be wonderful to think it is due to the white wonder (iv nutrition), in reality his albumin level went AWOL over the last few weeks for a host of reasons I am not going to pretend I understand.  What I do understand is that the low levels are causing fluid retention which is particularly affecting him below the knee.  His legs are once again giving him a workout.

Right now we are in a bit of a wait and watch pattern.   They literally track everything that comes out of him and wait and watch for a pattern of a decrease.  He is getting pretty sick of being sick and all of his energy is being sapped by trying to keep up with his gut.  Over this past week things have not gotten worse, but at the same time he has showed no sign of improvement yet.  We will continue to wait and watch intently.

The kids were in again this weekend for their 3rd or 4th visit.  Doug moved rooms so this was their first time in his new room.  Ethan walked in and immediately went to the bulletin board and said, "where's my lightnin' mcqueen card for daddy?"  Brogan walked in and said , "why are your lips so dry daddy?"  He then turned to me and whispered, "mom, you should really bring daddy some chapstick."  Their concerns about Doug remain the same - "kachow!"