99%

Three lovely photos have been posted for your entertainment. First, we have Joe smiling because his mind is far away from the Mepron he will soon be taking. The second is a photo of the Mepron. Didn't I tell you that it looks like bright yellow paint? The third photo needs little or no explanation - but it is Joe's reaction to taking Mepron. Apparently though, things could be worse. Poor Baby Livi has to take a medication that smells like skunk.

We went to see the doctor yesterday. Joe's rash is definitely looking better and better each day. He is not shedding as much skin, and his skin is not as red. Joe was given permission to taper his steroids slightly. Today was the first day of the taper; so far so good.

The results from the chimerism test earlier in the week show that Joe is 99% female. Yay! Those donor cells are doing just what they are supposed to be doing. The fact that they are doing what they are supposed to be doing largely contributes to why Joe's rash was so ugly. High price to pay, but in the end it should all prove to have been worth it.


Joe got another Neupogen shot on Friday because his WBC are still stubbornly low. The positive CMV result isn't helping either. Praise God though, because Joe is feeling well overall. Monday we return to the hospital. Mostly just a routine check. Thursday will be round two of the Cidofovir.
~~~
I keep forgetting...thank you Susan H. for the lovely card! It was really fun to read.

Great is the Lord, and most worthy of praise, in city of our God, his holy mountain. ~Psalm 48:1

Day +91

Photos make blogs more fun. Today, I didn't have a good photo to post, so I dug up a silly and random photo from the past especially for your entertainment.

We went to the hospital today, and aren't due to go back until Friday. Joe's rash - the main issue we've been focusing on for quite some time now - seriously seems to be getting better now. Although, it is still pretty severe. Joe is being kept on the same amount of steroids for now. The doctor fears that tapering too soon will cause the GVHD to flare up again. If that were to happen, the doctors would look to other drugs for treatment. In fact, even if Joe's rash continues as is for too long, other treatment options may be implemented - and they don't sound like fun. So please, let's pray that the rash stays in control, and in fact, continues to get better. We are indeed grateful for some GVHD, and we are very thankful that the GVHD has limited itself to the skin, but I think that it has worn out its welcome. I'm sure Joe would be quick to agree.

Other than that, and the fact that Joe constantly looks like he has an atrocious case of dandruff (despite having very few hairs) Joe is doing well. All of that hemorrhagic cystitis business has gone away, Joe's feet and ankles are back to looking svelte, and I'm seeing more of his smile!

Oh yes, Joe's blood draw. His WBC was a whopping 0.8 k/mcL (normal range= [4.4-11.0] k/mcL.) So Joe had another Neupogen (filgrastim) injection today. The lowness of the count may be connected to GVHD. It also could be due to a relapse - although everyone is pretty confident that is not the case. Just two weeks ago, Joe's chimerism test showed 99% donor. He did get another chimerism draw today, so we'll find out later this week how female Joe is now. Think 100%! On the positive side, Joe's hemoglobin continues to be good, and his platelets keep creeping up ve-ry sl-ow-ly.

One more thing. Over the weekend, Joe did a lot of sleeping. The thing is, most of his sleep happened during the day. The steroids seemed to work their magic at night when most people are sleeping peacefully and dreaming of vacationing in Fiji. Yeah, when he should have been sleeping, Joe was unable to. Not having to go to the hospital made it that much easier for Joe to sleep straight through the morning. I kept joking that I needed to ship him to Taiwan where the time difference would make his sleeping pattern normal! Thankfully, Joe fell asleep at a regular hour last night, so I think I might be able to keep him in the States for a bit longer.
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Happy happy belated birthday to Shelley!!!!!!! Hope you had fun celebrating your Easter birthday.

I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord.
~Psalm 40:1-3

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