It’s been a busy week and a half, especially as we look at separating the family again next week, so that’s my excuse for allowing so much time to pass before updating the blog…

Surgery for JT’s new port went well last week – the most brutal part was the 12 hours of no food or drink before the anesthesia. We were thankful that Dr. Garcia was able to do the procedure – some doctors, you just trust.

They left the port accessed for his now more-frequent IV steroid infusions. Last week he was having mobility issues again; he couldn’t straighten out one arm and left it bent at 90 degrees across his chest, sometimes holding it with the other arm. I got a little worked up, actually calling the hospital three times during his appointment to voice my belief that the doctors needed to step up his treatment plan. They agreed (because of his condition, not my blustering) and he’s currently getting oral steroids every day and IV steroids twice weekly – a 100% increase in steroids. Thankfully, his mobility returned relatively quickly. When she first told us that JT had Graft-vs.-Host-Disease, Dr. Filipovich also told us stories of patients who, left untreated, became confined to wheelchairs, completely unable to move their arms or legs due to irreversible damage. It made a deep impression.

But the steroids are also yielding their predictable side-effects. JT is back into a “moon-face” look as his face swells up. Also, he is wired for sound. It’s typical for kids on steroids to get wound up tighter than a drum and he certainly is. Thank God, we’ve had no sleep issues, but when he’s up he has a whole lot of extra energy. And every once in a while, he simply won’t be himself at all and we have to remind ourselves of what the doctors tell us, that someday they’ll give us our child back.

Jodi is doing a great job with JT’s buffet of medicines. She’s even learned how to administer the IV steroids and de-access the port. JT, Justy, and I are all lucky to have a woman like her taking care of us.

When we know that it’s short-lived, we’re even more attentive to the daily blessing of simply being together. We’ve been hiking, fishing, hanging out, and enjoying the heck out of each other. As I wrote in the blog last time, April 30 is the big day when photopheresis treatments begin, and it’s coming right up. We’ve got a place for Jodi and JT to stay for the first weeks in May, and we also have kind folks lined up to take care of Justy while I’m at work. 

These next days will go fast.

Please pray that these upcoming treatments hold the key to the radical healing we keep hoping for.

Thanks.