Just spoke with Jodi: they’re still in the hospital. JT’s scope went well. The doctors don’t celebrate until the biopsies come back negative but everything was visually clear and healthy in his esophagus and stomach and that’s celebratory news to us. The surgeon was able to place the G-tube so JT has gone from having a “nose friend” to having a new “belly friend.” They just started running feeds through it today and Jodi is going to try a bolus feed tonight before he goes to sleep. He was on morphine yesterday and complained of pain this morning but as the day wore on he seemed to get more and more comfortable.

New news: Dr. Filipovich ordered a full-body CAT scan for tomorrow; that’s why they’re still in Cincinnati. JT’s IGM levels are hyper-elevated and the doctors don’t ha ...

Thanks for your prayers. Our weekend together was awesome. We ate pizza, went sled riding, launched indoor balloons, jumped on the bed, hiked at Jennings, made a snow tunnel in a huge drift; it was wonderful. The boys are so good with each other and we enjoyed their company very much. It’s hard to imagine life or parenting getting much better than it was over the last two days.

Tomorrow Jodi will drop Justy at my parents’ house in Ohio and she and JT will head south to Cincinnati again. His scope and subsequent G-tube surgery is scheduled for Tuesday morning. The way I understand it, they’ll go down his esophagus and take a good look around first, taking a bunch of biopsies while they’re at it. If things look reasonably clear, the surgeon will insert the G-tube so that it comes right out through the wall of his stomach.

They wi ...

Thanks to all of you who have signed the guestbook and sent emails and let us know in other ways that you’re thinking of us. As Jacob always says, we’re “getting through it.”

It’s been a week of mixed news. Good news first: the doctors currently believe that the blood culture indicating an infection was a “false positive.” The type of bacteria that grew out commonly exists on the surface of skin and the new hypothesis is that the original sample was contaminated at some point. All cultures taken in Cincinnati have been negative for bacteria. This is an answer to prayer and after several days of IV antibiotics, they actually discharged JT late this afternoon for a three-day weekend. He and Jodi will arrive home late tonight and our family will be together over the weekend before he heads back on Monday for scopes, surgery, and more in ...

Thank God for Jodi’s intuition that the earlier Dr. Filipovich could see JT this week, the better. When I spoke with her over lunch, she and JT were heading through Columbus and she was feeling a strong sense of peace about making the long trip. Then JT’s nurse coordinator got in touch with troubling news: his blood culture last week has grown out a bacterial infection. The coordinator kindly wanted to give Jodi an opportunity to process what this means during the remaining drive time before she got hit with it upon arrival. It means a minimum week-long stay on the BMT inpatient floor, heavy-hitting IV antibiotics, etc.

Dr. Filipovich’s working hypothesis is that his port (central line) is infected. At this point in the evening he’s already received antibiotic infusions and they pulled a bunch of blood for testing:  the next three days will give us a much better ...

Brief post tonight, hopefully more tomorrow. JT received infusions at home this week and his lab numbers, though still askew, are trending in the right direction. However, we are very concerned about his skin. The texture and color and hardness change over the course of even a single day but overall we think it may have become a little worse in the last week and a half and certainly no better. Dr. Filipovich was traveling last week but is supposed to be back at the hospital tomorrow. JT has a 3:00 appointment – Jodi is going to call in the morning to confirm and then make the long trip south to Cincinnati. It’s a hard place to be in. We don’t want to expose him unnecessarily or push too aggressively with the treatment plan, but we also don’t want to sit on our hands at home while irreversible damage gets worse and worse. So we’ll see what Dr. Filipovich says tomorrow. W ...

Wednesday was a long day: many miles on the road and a whole lot to process.

Dr. Filipovich told us that last week’s skin biopsies were inconclusive – could be GVHD or could be a manifestation of another part of his disease called IP. However, there are other markers in his blood that indicate the strong possibility of GVHD and she’s very concerned about the hardening of his skin which can be catastrophic if left untreated. The solution is to knock down his new immune system so that it quits attacking his own cells but he’s been trying so hard to grow this very immune system for over a year now; the last thing we want to do is knock it down too far or too fast.

She told us of a light therapy that could help not only stop the GVHD but perhaps even reverse some of the damage - it’s a new treatment but the research literature indicates that it has ...

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 ...

I seem to be falling into the “weekend update” rhythm. It’s actually very nice that our days have some consistency about them now, that we aren’t all over the spectrum in the space of a week any longer…

Jodi administered the subcutaneous IG this week all by herself – no nurse present. I held JT on my lap but my role was that of encourager instead of restrainer, a part I’m much happier to play. The numbing cream seems to do the trick; he’s knows now that there won’t be any pain and takes the needles like a champ. It is a huge, huge blessing that we’re able to give this essential infusion on the couch at home rather than driving to Cincinnati for it all the time.

Jodi and JT are going to Cincinnati this week though. They’re heading south Tuesday night and will spend the night d ...

Wednesday’s infusion of subcutaneous IG was by far the best we’ve had. I didn’t have to hold JT down at all; he sat on the couch bravely and watched The Incredibles while Jodi stuck the needles in. No tears, no thrashing, no yelling. He was afraid, no doubt about it, but in his own words, “I’m getting through it.” The nurse only watched from afar and this Wednesday we’re on our own. 

The skin is still troublesome. It looks better but he’s still got bright red inflammation on his hands and arms and face and the itching is terrible, especially at night. We don’t know what to do. We keep giving him itch medicine but he itches frantically in his sleep. We don’t want to accept this but the only other alternative is steroids and those suppress his immune system.  ...