"Just the Facts"-- Mouth is healed, weight is holding, liver is healing, rash is being held at bay, but is ready to rage if we let our guard down. Levels looking good.
Well it has been a week since I have written a post! I have had a very busy week. B had GVH of the mouth and after the meds got going from one day to the next, it was completely healed! He says it was a miracle. Really you could see the gunk on his lower lip pretty easily, then the next day it was like a smooth, clean lip. Amazing. We attribute it to 2 things, 1) he had special mouth wash designed to work with GVH of the mouth, and 2) we came off of the IV meds and began a new med to help fight GVH and the other meds we have always been taking, now is able to work without interference from the IV meds. I do have to say that it has been really great not going to infusion every single day. Now B goes on Monday, Wednesday and Fridays. He gets a blood draw, then has to wait for the lab results, based on what the result say is what determines if he can go home or get some type of infusion. Friday, he had to get both blood and platelets, so it was a very long day. But one thing I have noticed is that for a while he was needing blood every week, but the past few weeks he has been able to go a week and a half before needing blood. So I am expecting this trend to continue and grow to every 2 weeks and so on. This is very exciting to us and makes us think he is well on his way to recover.
Energy seems to be an elusive thing most of the time. B does have moment of energy and it seems to show up at very odd times. Lots of times he get energy in the middle of the night. His head will also clear of the fog during this time too. So he is awake and watching TV or listening to music or reading until he tires again and can go back to bed. This has been going on for at least a month now. It's nice to feel good and be able to think, but he would like for that process to happen during the daytime. This latest medicine he has added to his routine and takes it 3 times a day causes drowsiness. So he is tired and dragging usually during the day this past week which lends to a lot of watching the TV. He has been enjoying watching the cooking channel. That is about the best he can do with his brain is to think about what to eat. The unfortunate part for me is that he has become very specific as to how his food is prepared. I get a very distinct detailed orders for what he wants, and every little part of the process is recited to me to make sure I do it correctly and to order. I think " what do you mean, I can't just slap it together and slide in front of you?" :) But most of the time I am a good soldier and follow orders. He still weighs in at 147 lbs. Maybe this next week we will hit the big 150. I know we are looking forward to tomorrow as we hit the significant 100 days!! Thank you all for coming along with us on this journey and keeping us in your prayers. It has been a hard and trying time, but your support has helped us in so many ways. Thank you!
Until next time,
Hopeful Believer.
