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 the most promise to help in a situation like Jacob’s. Cincinnati Children’s Hospital is supposed to be getting the necessary machine to do the treatment this month and have it operational some time in March. It works like this: they take out a bunch of his blood, run it through a machine that exposes the blood to very specific types of light, and then put the blood back into his body.

This means a couple of things. For starters, they have to pull his port and perform surgery to insert a new and different kind of central line. The port has been so great – under the skin, out of the way, almost forgotten until you need it. The central line is much different – daily maintenance, weekly sterile cap and dressing changes, higher risk of infection, risk of having it pulled out, etc. And of course we’ll have to be much more watchful. Not as much jumping and wrestling and rough-housing in the cards when he has an external central line to worry about.

The other thing we picked up is that the light therapy needs to be administered several times a week at the beginning of the process, only gradually becoming a once-a-week proposition. We’re not sure what that means in terms of trying to find a place to stay in Cincinnati again, how Jodi could take Justice along this time, how that would all work out. And we don’t know how long it would be – a couple months? We’re not sure about the details but we’ll be spending more time in Cincinnati than we expected.

Here’s what we know for certain: Dr. Filipovich will be watching JT closely this month to see how he responds to the steroids. He received an aggressive infusion at the hospital and the local home health nurse will administer another infusion here at home this coming Tuesday. Meanwhile, we’re giving him an oral dose every other day as well. A week and a half from today, he’ll go back to Cincinnati for an endoscope/colonoscopy and a host of gut biopsies. If everything looks okay, they’ll go ahead and place the G-tube into his stomach. And if they can get it all coordinated, I believe they’ll also do the surgery to remove the port and place the new central line while he’s under anesthesia. I sent Dr. Filipovich an email on Friday saying that we want to be sure she wants to go ahead with the light therapy before we change lines. We’re still waiting for 100% confirmation on that though we’re almost certain that’s her plan.

Also, his liver numbers are up. This can be a sign of GVHD going after his internal organs, and that would take things to a whole new level. However, Dr. Filipovich is hopeful that the steroids will calm this down too. 

And something else – his white blood cell count was up around 24,000 and we don’t know why. The home health nurse is coming tomorrow morning after JT and Jodi get back from Pitts to take a whole bunch of blood for a whole bunch of tests. She told us to push extra fluids today because they’ll be taking tubes and tubes and tubes of blood – all kinds of tests and cultures. They want these results before they give another dose of IV steroids. 

So there are a host of things to pray for – encouraging results from tomorrow’s lab and protection and healing for his skin for starters. Next week our requests will be for safe and positive scopes and for the two surgeries to go well. And we pray for wisdom and good results if the light therapy is a definite go. Our ultimate hope continues to be that the wonderful work of healing begun in his little body will be carried on to completion. 

The good news is that he’s sure not acting sick. Our good friend brought an elaborate Valentine’s Day treasure hunt over to the house for the boys this week and it was a huge hit. We’ve tried to get out a little bit as the weather has allowed. The boys spent last night over at camp with Grandpa and Grandma Brown and Aunt Rebecca. They’re happy.

When Jacob has been the sickest, he’s looked at me and said, “I’m getting through it” and that’s what we’ll all do as the journey continues. Please join us in praying for him. Thanks.