Now You Have It....Now You Don't

Another Waiting Game

Well, I'm not sure what to say--Ray would comment, "That's a first!" They have finally decided to do a scope to see if they can get a definitive answer on whether his multiple, evasive symptoms are caused by GVHD (graft-verses-host-disease.) Sometimes just looking at the gut will give them enough information. If not, then they do a biopsy.

We're not exactly sure when the scope will take place because it even though it was decided today it was time to scope, they will have to wait to contact the gastroenterologist sometime tomorrow and see when he can work it into his schedule--that could be morning, noon, or evening.

Meanwhile they have taken Ray off all food and water. This is for a couple of reasons. 1) So he'll have nothing on his stomach when they give him the anesthesia tomorrow and 2) If it is GVHD they don't let him eat or drink anything to completely rest the gut.

So we wait to find out when the scope will be and we wait to find out the results from the scope.

Graft Verses Host Disease

GVHD is where the donor (graft) cells start attacking the receiver (host) cells. It's called acute if it occurs in the first 100 days after transplant. It can be said that it is an unwanted complication. Symptoms include diarrhea, skin rashes and unusual pigmentation, red skin, fever, dry eyes and mouth. Since Ray has had some of these symptoms since he was first admitted, it's hard to determine for sure if it truly is GVHD. They say the scope is the best way to tell what's going on so we're having a scope.

They treat GVHD with high doses of steroids and keep the patient without anything to eat or drink for a week or two to repair the gut. Then they back off on the steroids and slowly introduce water, liquids, and then solids back into the diet.

The Ups and Downs

Last night was the first night since Jan 28th that Ray was alone during the night. It was good to have him well enough to be able to leave alone for a few hours. It's now become hard to leave him alone after spending so much time together.

As you've seen from Ray's recent blog, the new stem cells are producing nicely. His white blood cells are within normal limits. The PA came in last Thurs saying he could probably go home Sunday (today) because his counts were great. I was shocked. After how sick he had been they actually were thinking about sending him home.

We were exhausted from the hospital so our home was no where near ready for Ray to come home to. I panicked a little the next day when they brought the discharge planner in to start setting things up. But when he got another fever Fri, they said said he bought himself a little more time in the hospital.

Now they're talking about possible GVHD and an additional 2-3 weeks in the hospital, I wouldn't mind going back to the Sunday discharge. Oh well. We'll just stay on the ride and hang on.