Day +120 Improving & Holding

Dear Family and Friends: This is a blog entry by Charles' father, Don.
It is hard to believe that this is Charles' 16th week at OHSU. Originally it was thought that he'd be here from 3-5 weeks then be released to stay within 15 minutes travel-time for 100 days. We don't know yet how being here so long will affect his 100 days after discharge. One thing that we learned early in Charles' treatment was that the Drs. had no real answers for our "When" questions. As humans we want the boxes to be SQUARE and the circles to be ROUND. But in this situation there are no final answers. The process is: Diagnose and Treat. Over many cases there is a general course that emerges BUT each person takes their own course. So, Diagnose and Treat. Charles has had a severe case of Graft vs Host Disease (GVHD) while others have come, been treated, and gone on. As you can see Charles has a bit of a mustache and beard now. Since he as not had chemo therapy for sometime his hair is returning.
Currently, the gut is still in the process of healing. It has improved but not to the point that Charles can take solid food. He is no longer "Nothing through the mouth" (NPO); he can take some liquids. He fav is Gatorade and water. He still has gut pain and ocassionally his gut cramps. For the pain he takes meds which help.
He had a incident about a week and a half ago with an ulcer on his left eye. As they looked at it they found that the eye was drying out and cracking, like skin. They have treated that and it is "coming along." At night his eye is taped shut to keep it moist.
I saw the physical therapist today and she said that Charles is coming along. He is gaining strength in his legs and is able to stand longer - 10 minutes. He is also gaining strength and more movement in his left arm. Lauren is a wonderful therapist and really gives Charles a workout. Charles is still weak and the physical therapy is to help strengthen his muscle as well as exercise his ligaments and tendons - to keep them limber.
Part of Charles therapy has been foot massage. Here Marilyn give his feet a workout. I asked Charles "Why the foot massage?" He has only had it a few times. He said he really didn't know but it felt GOOD.
Charles has been out from under the "cloud of drugs" now for some time and has been more cognative. He is able to read, watch movies (thanks H?????), work on crossword puzzles and read. He spends much of his day in his chair. Charles reminds me that even though his is out from under the "cloud of drugs" that he is still take a lot of them.
Charles has splints that he wears a portion of each day. He has a left wrist splint and a right leg split. The splints are to keep the wrist and leg in correct position/alignment while they are not being used much.
To be released he has to meet the following: 1.) all meds by mouth, 2.) able to take food via mouth & 3.) able to be up and about on his own. If he gets to 1 & 2 but not 3 it is possible that he might be moved to a facility for the physical therapy.
The Drs. check daily on Charles status. The nurses and CNAs are wonderful. And, Karlin is a jewel. I was sorry to hear that she is sick now. We hope she will get well quickly. Charles appreciates the love and care of his family and friends. We too, feel very blessed with all the wonderful care Charles has received. And specially, the love and support that he receives. Thank you!