Day +80

This morning, Joe woke up with a start and realized that we forgot to set the alarm. Joe called the office to tell them we would be a little late for our 9:00am appointment. Actually, we could have been right on time, but Joe needed to get his blood drawn from the outpatient office first. Now that Joe doesn't have his line, he needs to get his blood drawn from the outpatient office if he's not going to short stay.

When we finally arrived at the BMT office around 9:30am, we discovered that the doctor who set up our appointment had given us the wrong time! We weren't supposed to be there until 3:30pm! Fortunately, the office didn't make us wait until 3:30 to be seen.

Joe's counts are still not so high. But we refuse to allow numbers on a piece of paper to determine what kind of day we have. We just have to accept that Joe's counts will be a bit wild for awhile, and that's okay. The good news. There is always some type of good news! On Monday, Joe had a blood draw for a chimerism test. The test showed that Joe's peripheral blood is 98-99% donor. This means that the Vidaza did what it needed to do. Let's just keep praying that those donor cells stay in control.

Joe's rash didn't look much better after the slight increase in steroids from Wednesday. Today, Joe was given a more significant increase. The doctor is hoping to taper the dosage again by Monday. The plan is that the kick up in steroids will cool down the GVHD so it doesn't get out of control. It is another balancing game. The risk with increasing the steroids is that there is a greater chance that the CMV will become positive again. Still the dosage of steroids given to Joe is still considered a relatively low dose. So we'll just keep praying and trusting that all will work as it should.

And finally, Joe's Miss Piggy feet. The edema seems to have gotten worse. Today Joe had a bit of pain in his right calf. Joe was given an ultrasound to rule out the possibility of a blood clot. Surprisingly, even people with very low platelet counts have been found to have blood clots. Then they are given medication to treat the clot, and lots of platelet transfusions. Sounds crazy, doesn't it? Fortunately, just as suspected, Joe's ultrasound showed no sign of clots.

We have another weekend off, and then back to the hospital on Monday. Monday marks our two year wedding anniversary, so I anticipate we'll receive all kinds of wonderful news regarding Joe's condition. I don't think that is asking too much!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
~Romans 15:13

Day +79

Yesterday's visit to the hospital was relatively quick and painless. Our friend Marcus is doing a rotation at the hospital, so he provided some entertainment while we were there. Joe tested negative for CMV again. Yay! This is really wonderful news. With Joe's counts and the drugs he is on, the doctors would have preferred to keep Joe on Foscarnet, at least a few times a week until Day 100. Since Joe developed a side effect, the doctors are keeping him off everything used to treat CMV for now. If Joe were to test positive again (and we know that he will NOT), there is a third drug (after Ganciclovir and Foscarnet) that would be used as treatment.

The not so fun parts of this week are that Joe's GVHD rash seems to be getting worse again. As you might recall, his skin was peeling like crazy, but the rash seemed to be healing. The peeling continued in waves, and the rash continued to look better. As the rash got better, the steroids were tapered more and more. Over the weekend, the rash started to look more pink again. Now, it seems that the rash is back with a vengeance, and Joe is itching like crazy. He calls it alligator skin. Yesterday, the steroids were increased slightly. Hopefully that helps. To make things even more fun Joe is experiencing some edema. It is not too much of a concern right now, but Joe's usually slender and sleek ankles and feet now look like they belong to Miss Piggy. Joe is not really feeling like himself right now. And finally, because the rash and edema are not enough to procur sympathy from others, the Hemorrhagic Cystitis which Joe so eloquently described in a previous post has returned.

Joe isn't exactly enjoying all of this. How could he? But he is being tougher than can be expected under the circumstances. Tomorrow we'll be returning to the hospital. We'll keep our faithful readers updated!

The Lord will sustain him on his sickbed and restore him from his bed of illness.
~Psalm 41:3