JT needs your prayers this week more than he has in a long time.

Wednesday’s trip to Cincinnati Children’s was far more traumatic than we ever imagined. The meeting with the GI doctor was routine enough – no surprises there. The surprises started when Dr. Filipovich saw his skin during his visit to the Day Hospital.

She thinks that he may have Chronic Graft-vs.-Host-Disease (GVHD) of the skin. As I wrote last week, after his last horrific flare-up he developed scar tissue over much of his body. These huge areas of skin have been hardening, becoming “wooden,” and this is what GVHD looks like in the skin. 

This is very sobering news and we’re still trying to get our hands around it. GVHD can range from mild to life-threatening and can persist for a lifetime. If left untreated, the stiffening of the skin can move into the joints and become irreversible. Needless to say, Wednesday’s visit turned out to be much longer than expected and included two unscheduled biopsies from sites on his upper arm. They gave him a huge dose of IV steroids and sent them home with a prescription for oral steroids too. They took all kinds of blood to look for other GVHD markers. 

His liver numbers continue to be a little off as well. I guess GVHD can go after internal organs too but Dr. Filipovich said there was no need to do a biopsy of the liver “yet”. If they give us the go-ahead for the G-tube they plan to scope him thoroughly from both ends and take a whole host of biopsies while he’s under: Dr. Filipovich wonders if part of his eating troubles isn’t related to GVHD of the gut.

So yeah, we’re kind of reeling from all of this. He’s been doing so well for so long, and we thought that the risk of GVHD was largely behind us. The treatment (steroids) is designed to suppress his immune system which of course makes him more susceptible to infection. Just as we were letting him get out and about a little it looks like we’ll have to circle the wagons and go back to more isolation. 

We’ve been told that treatment for this will last “months and months and months and months,” perhaps years. The doctor said that he “might” still be able to go to preschool in the fall. Jodi especially is struggling with the idea that so many of our plans for widening his world may need significant revising. 

Jodi did have an interesting talk on the phone with Dr. Marsh on Friday – she said that his skin condition may be due to a part of his skin disease called IP instead of due to GVHD. This sounded promising to us but she said it didn’t really matter: what’s happening in his skin is a big deal regardless of what’s causing it and they plan to treat it “very aggressively.”

Regular trips to Cincinnati are back on the agenda, starting this week. Jodi and JT will head south T,W, or Th to the Clinic. By that time, all of the tests from last week should be back and as we understand it, Dr. Filipovich will look at the whole picture and make some decisions. We hope that Dr. Lucky (from dermatology) will also be present and it’s our impression that they will put together a game plan for treatment that will include several other components in addition to the steroids. Jodi said that he may be back to a host of daily oral meds again.

It’s all hard news. But JT is still running around happily and I tend to use his general well-being as a barometer reading for what my anxiety level should be. We feel a little overwhelmed at the timing of things: before this thing with the G-tube came up, we weren’t scheduled to go to Cincinnati until March. Dr. Filipovich said this absolutely could not have waited two more weeks and I think to myself – what might have happened if she hadn’t seen him when she did, what could have happened in the next two months? I placed JT in God’s hands a long time ago and as one of my favorite authors says, God is “notoriously unpredictable.” 

And to be honest, Jodi and I are a little relieved that the doctors are finally taking the skin problems more seriously. We’ve been saying for some time that this can’t go on, his skin misery just can’t go on, and they kept throwing up their hands. If these concerns about GVHD are what forced things to a tipping point maybe that’s exactly what needed to happen.

Anyway, it will be another long week. Jodi and JT head to Pittsburgh tomorrow morning for his weekly therapy at the Children’s Institute. Then they’ll head to Cincinnati for his follow-up appointment. Please pray. Please pray for safe travel. Please pray that this is not GVHD, never GVHD. Please pray that the treatments for his skin restore him. And please pray that the work of healing begun in his little body is carried on to completion. Thank you.