Sorry that we haven't updated for the last two weeks.  When everything is going well and JT is improving and we're all at home together, it's easy to let the blog slide. 

As usual, there's some good news and some of the other kind as well.  During these last weeks, JT was in the hospital 2 days / week for photopheresis and his other infusions.  For instance, yesterday he and I left GC around 6:00 a.m,, arrived here at noon, and spent the day in hospital room 93  before heading to the hotel.  This morning we were back here at 7:45 a.m. and we'll be lucky to leave by 7:00 p.m. before starting the long drive home.  The schedule sounds brutal, but it's really been wonderful in the big picture:  our family has been together 5 days / week and we've only had one hotel stay a week to contend with. 

All that changed yesterday.  Here's the story:  two weeks ago, the doctors decided to taper JT's steroid dose at about the same time we switched to 2 days / week of photophersis instead of 3 days / week.  Last week, the doctors agreed with Jodi and I that the Graft-vs.-Host-Disease had worsened noticeably, especially on his arms and hands where the damage is most severe.  They immediately ramped the steroid dose back up and starting next week, he'll return to photopheresis 3 days / week.

Here's the catch...because he's so small, they can't do the therapy on three consecutive days.  So for the rest of the summer, he'll have to be in the hospital each week Monday, Wednesday, and Thursday (Tuesday will be down-time in a Cincinnati hotel room.)  Monday morning and Thursday evening will entail a whole lot of highway miles.

We're bummed, especially for JT who will only be home for three-day weekends now.  But of course we know that we're very blessed as well.  Since I'm on summer vacation from school, I'll be able to make the trip every other week and spend the off-weeks with Justice at home.  Most families wouldn't have that option and I'm so thankful, once again, that I was led by the nose into teaching.

We're also unbelievably lucky to have the therapy available to us.  There are only 3 or 4 places in the country that offer photopheresis and knowing than sure helps put the drive from PA into perspective.  What if the closest option was Idaho?

So we're keeping on keeping on and as we do, we have some definite prayer requests.  First and foremost - that the GVHD stops once and for all and that his body experiences healing from the damage.  Secondly, that his immune system recovers from all of the suppression it's undergone in the last six months.  Thirdy, that he'll be able to get out and about this Fall - we had high hopes for some sort of pre-school experience for him.

And this one is really on our minds these days:  since they increased the steroid dose, JT has exhibited some of the classic side-effects.  These have become much worse in the last two weeks.  It is very difficult to see our son being "not himself," especially because we know that what we're seeing is the medicine, not him.  When I mention this at the hospital, they chuckle and tell us, "We'll give you your son back someday."  But this is hard to hear - if we can't have our son back physically yet, at least let us have his real personality back.  They will consider backing off the steroids slowly starting next Thursday and of course, it's a long, slow taper.  I'm afraid it will be a while before these side effects abate.  For now, they're real and they're trying so please pray for an extra measure of grace and patience for us and for JT as we get through this together.

We plant to return to weekly blog entries and I also hope to be "updating" some of the website's information soon, so please don't wait too long before checking back in... 

Thank you!