My apologies for the delayed update: in my defense, we’ve had a couple false starts and I didn’t want to write until things had shaken out. They took a long time to shake out.

 

Anyway – here it is. JT continues to eat a little bit each day. In fact, he’s up to 15 Cheerios six times a day. For him, this is huge and represents enormous progress and good hope for the future. He also kicked the viral infection. No more D and V; for that we are relieved and very grateful.

 

His skin, however, is no better. At times we believe it’s even getting worse as the severity ebbs and flows. Last week we were alarmed because he seemed to be losing mobility in his wrists and hands but he improved after a dose of the IV steroids. Nonetheless, things are not heading in the right direction and his hands are especially bad.

 

They’re bad enough that Dr. Filipovich has ordered that we step up the IV steroid infusions to twice a week. They left his port accessed when he was discharged yesterday from Cincinnati and Jodi plans to push the infusion at home on Sunday.

 

Here’s the current big-picture deal: This coming Tuesday, April 15, Dr. Garcia will perform the surgery to remove JT’s old port and insert a new, bigger one that will accommodate the photopheresis treatments. It will be left accessed for his steroid infusion on Wednesday and if all goes well, he’ll be able to come home. He’ll then return to Cincinnati on April 23 for his regularly-scheduled weekly appointment.

 

April 30 is the day we’ve been waiting for, the big day when he’ll begin photopheresis. The treatments will be 4 hours in length and will be given Monday, Wednesday, and Friday. He’ll be at the hospital either Tuesday or Thursday as well since they can’t do photopheresis and his infusions on the same day. This 4 day/ week hospital schedule will last at least two weeks, at which point the doctors hope to see marked improvement in his skin. The next stage of photopheresis protocol involves treatments given on two consecutive days every other week, and I believe that this routine will last indefinitely.

 

What is definite is that soon Jodi and JT will be living in Cincinnati for at least 2 – 2 ½ weeks. Jodi has been on the phone with some area hotels to negotiate rates for long-term stays and we’ll be leaning heavily (again) on family and friends to help watch Justice while I’m at work. While we hate to separate the family, we have high hopes that this new treatment will be pivotal in stopping this accursed Graft-vs.-Host-Disease and even reversing some of the now-significant damage to his skin.

 

We also have anxieties. The reason we have to wait to start until April 30 is because they aren’t prepared to give the treatment to someone so young – they need extra training since JT is such a little guy. He’s the first one at CCHMC who will go through the procedure. While we’re thankful that he’s first on the list, we ask for earnest prayer that it goes well and that he experiences no problems.

 

Also, please pray about his liver. The lab numbers are off again, and the doctors worry about GVHD of the liver or perhaps a viral infection there. Liver problems are the last thing he needs. There was mention of trying to do a biopsy of the liver while he was under for his port surgery but I don’t know if that will end up working with scheduling.

 

So – there’s a lot to pray for: his skin, his liver, GVHD, eating issues, the upcoming photopheresis treatments, JT and Jodi’s extended stay in Cincinnati, strength and courage for our boy. And as always, that he’d receive complete healing someday soon. 

 

Thank you.