Thank goodness JT is feeling better: today we sat in a closet-sized room in the Clinic from 12:00 until 5:00. If you added up all of the time we were with people, I’m sure it would have been less than 45 minutes. That’s a long time to wait. I was proud that he was such a good sport, playing and joking around with me the whole time even though he completely missed his nap.
It’s always good to see Dr. Filipovich. She continues to assure me that the big picture looks promising. But she’s also concerned that this D and V routine has been going on for so long. We talked at length about the reasons that TPN or a G-tube are out for JT, and frankly, I’m thankful they’re out. However, she wants to get the GI docs involved again. Guess what that means? Another 9:00 appointment at the Clinic tomorrow. She said they may want to consider another scope though it doesn’t seem very long since the last one to me. I’ll take some convincing.
Evidently, JT’s T-cells are more lively than they’d be in a healthy person. This could be a great thing, evidence that his own immune system is ramping up in response to his skin inflammation, etc. But it can also be associated with Graft-vs.-Host-Disease. She said she didn’t think this would prove to be the case, but it might warrant a trial-run of treatment with steroids. She put a positive spin on it: steroids would stimulate his appetite. But they’d also make him swell up again and they’re an immune suppressant: seems like another step backwards to me.
She’s not going to continue tapering the Cyclosporine until we get the GI thing sorted out. Rats.
So – please pray earnestly that he continues to be completely spared from any GVHD whatsoever. Also, please pray that he begins to show some real improvement. Dr. Filipovich thinks he is improving, “at a snail’s pace.” I’d like to see something a little speedier. Finally, remember Jodi’s yearly check-up in your prayers – it’s Friday afternoon. Thank you for continuing to check in on us – you’re faithful folks.