Return of the Steroids

Ryan's doctors put him on steroids yesterday to try to control the GVHD (graft versus host disease) that they confirmed from those biopsies. Ryan was pretty disappointed. He was hoping to be able to kick the GVHD without steroids. But the doctors thought this was the best option- try to hurry and get it under control and not risk having it really take over. We don't want a coup here. Steroids cause a whole host of problems for Ryan. He has severe muscle wasting if he's on them for very long. He doesn't like the way they change his personality/demeanor (roid rage is no joke, people). They throw his blood sugar level through the roof. Since yesterday morning Ryan's blood sugar level went from low 100s (very normal and consistent for him) to 270 last night. So they're pricking his finger every couple hours and giving him insulin shots. No fun.

His stomach is still really hurting, but they're hoping if they can get the GVHD under control then that will get a little better. Still no food for Ryan, although I can tell he'd like to eat. I'm under strict orders to not talk about food. That's tough because food is one of my favorite topics of conversation. They're talking about letting him eat a tiny bit today and see how it goes. There's a detailed eating plan when you have GVHD. You start with one thing (just one!) and it can be half a cup of white rice or mashed potatoes (no butter!) or a slice of white bread. And then depending on how that goes, you can add one new thing the next day. It's slow going.

His counts are looking awesome though. His white count is 1800, platelets are at 79, hematocrit is almost 30. One more day like that and they'll officially say he has engrafted. That is really exciting. Even with the GVHD, the bright side is that maybe he'll experience the GVL effect to a greater degree (graft versus leukemia effect, which is a good thing.) Oh, two more pieces of good news- the polyp biopsy came back and it's not cancerous AND they found a medicine that helps a lot with the burning feet problem. Super nice.

This post is kind of late because I keep waiting for Ryan to do a post and I know he really wants to. He says he picks one of his better times, opens the laptop, gets ready to start typing, and then instantly falls asleep sitting up. (He really does do this, I've watched him.) I think the mental energy it costs him to write is just too much for him.

We had a good time playing Name That Tune last night. This is Ryan's trickiest way of getting me to stay awake longer (and now he knows I know). I got "While My Guitar Gently Weeps" and "Can't Get No Satisfaction" and "These Are Days" super fast. I failed on a bunch of Ani DiFranco songs ("Slide" and "Make Me Stay" and "Dog Coffee". Son, I am disappoint.) Ryan didn't sleep a whole lot during the night, what with all the finger pokes for his blood sugar levels. I slept better than I usually do here. I'm trying to let Ryan get some sleep this morning, but it is a steady stream of hospital people this morning.

Picture for the day: Ryan holding a green tea from our most recent trip to San Francisco (May 2009). This green tea is easily the worst thing I've ever tasted. Kind of makes you never want to eat again. Maybe they could use a mouth rinse of this for Ryan. Help him get over the idea of wanting to eat.