Holding Our Breath

Can it possibly be that Ray's health may be turning around for the better? We think/hope so! He's now at 'Day 72' & although he's still experiencing some negative things, he's beginning to have better days. We hope that continues but we are definitely holding our breath for a bit yet.

He is experiencing the dreaded GVHD (Graft Versus Host Disease) of the skin. When it first started a little over a week ago, it didn't itch but that changed a couple of days later as the rash began to spread. We were back to going to the hospital every day. His doctor put him on a daily mega dose of steroids, along with the steroid cream he uses & another medicine to combat it. Thankfully it seems to be working. The itching finally subsided & the rash is calming down somewhat now. It still has a way to go.

Interestingly the doctor told us that developing GVHD is sort of a good thing. Say what!? Ok, so it's kind of an oxymoron. She went on to explain that it proves that the donor cells are working.

The chest catheter was removed a few days ago & replaced with a single port that lies underneath his skin. The purpose of the port is to make it easier for the continued blood draws & infusions he must still undergo over the next few months. They just easily poke through the skin to acess the port which is painless. The single port under the skin is so much better than having those three long lines dangling down his chest. When he was undergoing so much previously, the three lines were necessary when they were administering multiple meds via IV, plus one line was dedicated to infusing the anti-rejection med only. Now he can shower without fear of getting that contraption wet. A real shower - just one of the many things he took for granted. For those interested, this picture describes how the port works & how it looks in the chest. Actually, Ray's is less visible than the one in the photo below.

Ray had another endoscopy late last week too. The initial results look good. The ulcers in his esophagus are gone. We are waiting for the biopsy results of the stomach to see if there is any GVHD there that might explain a few issues he has. 

After we left the hospital today Ray wanted to go to Burger King & indulge in a Whopper hamburger. That's the first he's ate anything outside of our house or the hospital in a very long time. He loved it!

Finally today at the hospital, it was decided because his labs looked much improved, as well as his blood pressure & there doesn't seem to be a need for the infusions right now, that we get tomorrow off! We head back on Wednesday at which time his condition will again be re-evaluated. We know there will be several medication adjustments over the next few weeks as they'll need to wean Ray off those mega steroids & other meds after they accomplish what they're meant to do with regard to his GVHD. So yes, we are holding our breath hoping nothing new develops that would cause more problems.