Hi all: Anna here again while John the gets spa treatment--nurse assitant Robert is giving him a sponge bath.
The clinical team (Dr. Champlin is on rotation for Dr. Andersson, along with PhD pharmacist, etc.) just left and good news is that CMV infection is essentially gone; the counts have dropped enough to discharge John with tablets he can take at home. Graft vs. host disease is considered cured for now.
Only remaining issue is a bit difficult to manage--the weakness due to neuropathy in feet, myopathy in leg muscles, and autonomic neuropathy (creating blood pressure drop when John stands up or sits up)--this is nerve damage from chemo and possibly complicated by the steroids. He'll be getting some rehabilitation here in addition to physical and occupational therapy. Dr. Champlin implied it would be a week or two until he can go home, as they want to make sure he can walk safely without risk of falling. The autonomic neuropathy requires re-teaching nerves and may not be super fast to cure.
As this episode stretches out, it's becoming clear to us that we'd love to have visitors and we can use some help. We acknowledge all that you have already given and we're forever grateful for your amazing thoughtfulness during the transplant last summer and fall, and for your non-stop concern for John.
In the hospital, John can use various kinds of help--such as people walking around the floor with him, sharing meals and providing snacks, washing clothes in Rotary House, reading to him, providing company, etc. Outside the hospital, we may need help with Dillon at times. So far, lovely Cynthia, who is a dog rescue goddess, has him in her home and at her workplace during week days. I plan to pick Dillon up tonight and take him to Austin through Sunday.
I am now commuting between Austin and Houston. Although I prefer being by John's side, I also wish to continue my work, exercise, and dance. So there will be times when he is alone here. So far, we've had coverage--by Mason, Jay Byrd, and Peg (who will come tonight). Starting tomorrow (Saturday) afternoon when Peg leaves, John will be alone for 24 hours or more. He would appreciate phone calls if no one can be here.
To connect with us, please contact me at 512-431-6619, John at 512-784-7533, or email both of us via Anna's email address: firstname.lastname@example.org
Lots of love,