Brian here, almost afraid to admit it: to the charge of “Failure to Blog,” I plead guilty. Believe me, I’ve packed my bags and taken a long and scenic guilt trip, paid for in full by my tour guide and tough-loving younger sister. I offer only apologies, no excuses. However, I guess now that excuses are on my mind, I will offer this after all…

 

Our life is settling down into a routine and JT’s medical situation is a big part of that routine. Every week it’s a subcutaneous IGg infusion and a steroid bolus through the central line port at home. Every other week, it’s a trip to Cincinnati for more medicine and photopheresis. We’ve tried twice now to switch to an every-three-weeks schedule but his skin quickly changed for the worse both times. We noticed the tightening rings of skin on his arms especially. It’s called “banding” and it’s a sign that the Graft-vs.-Host Disease is still active. So I think we’ll be making the bi-weekly trips south for a long time to come.

 

I guess one reason I haven’t written a blog update is that the medical issues that once seemed so huge have become commonplace. And perhaps another reason is that there doesn’t seem to be an end in sight. 

 

What at one point was a complete disruption of our original life plan has simply become the new life plan. Plus, at one time, we looked forward to closure. We thought that at some point after the transplant, or after the photopheresis treatments, or after whatever was up next, this whole thing would be “over.” And I see now that I used to write the blog entries that way – like I was writing a new chapter towards what I always assumed was an ending. I guess one day I thought that I’d be able to say, with confidence, “The End.” Not so.

 

And now that the hospital trips and the procedures and the medical terminology are nothing new and different, the days and weeks and months tend to run together and what once seemed newsworthy now seems just another part of our family’s ever-present reality. Things are much better for sure, in fact things are downright fantastic, but there are some broken things in this world that won’t ever be “all better.” I’m understanding that some of the healing will have to wait.  

 

Enough philosophizing. Sorry we’ve been incommunicado. Practically speaking, we’ve had an outstanding couple of months. In fact, after August’s massive scare with the flesh-eating bacteria and emergency surgery, September through December have been the four best, most “normal” months we’ve had since JT’s birth. It’s been a marvelously good season in a very settled sort of way.

 

Halloween was terrific – JT was a knight and Justy was a fireman. Twice, while out trick-or-treating, JT actually charged other revelers – one was a college kid clad in a knight costume who felt the smite of our son’s plastic blade; another was a child-ninja who, despite being much bigger and having two swords with his costume, seemed to get the worst of it when JT initiated a duel. Justy extinguished a “fire” at the downtown Subway. Thank goodness this small town is peopled with good sports. 

 

Thanksgiving was a time of thanksgiving. The big day for us was December 6. We celebrated St. Nicholas Day with great good cheer – three years out from transplant! Thank you to our kind friends who remembered. JT has come so far and has been so strong and so brave during the whole journey. The boys opened their stockings and we got into some other generous mischief as becomes St. Nicholas Day. It was a highlight of the year.

 

Christmas was wonderful – no last minute medical emergencies like last year. In fact, as long as folks were well we were finally able to go to a few more family Christmas gatherings without so much fear of exposure. In some cases, it was the first time some of our family had met our boys, so it was pretty sweet. Towards the end of the vacation time, Jodi and I got away for an overnight XC skiing trip, courtesy of my parents. It was great.

 

We hope for more good things in 2010. We are so thankful that JT hasn’t had the same trouble with fevers this year – last winter it seemed as though we spent about every other weekend in the Emergency Room. This winter we’ve been home, usually recovering from a hard day of sled riding if there’s been snow. The boys are both still in school – last year they had to sit out from October through March. Their teachers are great, and at this point, I think having a positive association with school is more than half the battle. Also, the boys started attending Sunday school this Fall. Another long-awaited first.

 

JT still does not eat. I recently learned that Graft-vs.-Host Disease of the skin can actually damage taste buds, and I wonder is this is part of what’s happened. He’s interested in food, but says that nothing tastes good to him. This issue is still on the back burner – once we get the GVHD under control, I think we’ll probably have to start focusing more on this arena.  

 

Well – first I don’t update the blog for two months and then I go on and on… One of my goals for 2010 is more frequent, shorter updates. One thing’s for sure: with my sister to keep me honest, another lapse like this last one is highly unlikely. Seriously, thanks for remembering us, sticking with us, continuing to follow our story even when we fall down in the telling of it. I hope for the best for each of you in 2010.