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