Life is good here but for this accursed rash. It seems to be browning down some on his arms, legs, and torso, but his face looks worse than ever and his hands are starting to crack and bleed. Not good. Once again, we earnestly hope that when Jodi talks to Cincinnati tomorrow, they’ll have some new ideas about the IVIG based on Dr. Kress’s hypotheses. I know JT needs the IVIG, but I can’t see giving the same thing to him yet again and causing a third outbreak before the first two are anywhere near healed. 

In the midst of the rash troubles the feeding thing has taken a back seat. Jodi is also going to be in touch tomorrow with the Children’s Institute about weekly speech therapy with a view towards getting him to swallow again. 

Hard to believe that it’s a Cincinnati week but it surely is. Please start praying ...

Tonight was trick-or-treat in Grove City: JT went as a dragon and Justy was a bat and a good time was had by all. I’m so taken with how the simplest joys of this life thrill them. 

JT’s rash is about the same. Please keep praying for him. This upcoming week is another Cincinnati week (the 3^rd in a row) and we’re hoping that between Dr. Kress and the immunologists there, they may have some fresh ideas. In the meantime, we’re all a bit tired, looking forward to a Sunday of rest.   

We like the dermatologist from Pittsburgh – he’s a problem-solver it seems to me. Anyway, he has a few new ideas about the rash, and I like that a lot better than throwing up the hands and saying it could be this, that, or the other thing, who knows? He said that it could be something autoimmune related to the transplant and the IVIG and that he was going to consult with Dr. Lucky and our Cincinnati immunologists. We’re hoping one of his ideas might be the right one, that JT can finally get some relief.

Everyone is tired tonight. Even so, Jodi got the boys dressed up in their Halloween costumes (JT is a green dragon and Justy is a bat) and we headed out to the Outlet Mall for trick-or-treat night. We went up and down a few aisles and the boys enjoyed carrying their pumpkins around, collecting goodies, and seeing the other children’s costumes. 

Can you say frustration? Let’s all say it together...

After leaving our house at 6:30 am, Jodi and JT finally arrived in Cincinnati in time for their 12:15 appointment. They waited for over two hours before seeing anyone. And when the doctor finally did come in, she spent a few minutes listening and then said JT needed to see a dermatologist, but JT’s dermatologist wasn’t available. So we should see the dermatologist in Pittsburgh. Yep, the dermatologist in Pittsburgh. Oh, and thanks for coming to Cincinnati!

So Jodi is still in the car, still driving north. JT has an appointment tomorrow with the pediatric dermatologist in Pittsburgh tomorrow at 1:15. Cincinnati wasn’t certain – this could be GVHD but it doesn’t really sound like it, could be infectious but don’t really know…ba ...

Jodi is busily packing the minivan for yet another trip to Cincinnati. JT’s appointment is at 12:45 so she’ll be leaving here very early tomorrow morning, dropping off Justy at my parents’ house, and making the long drive south. Please pray for safe traveling mercies.

And please pray that the doctors have wisdom and insight to offer regarding JT’s terrible skin affliction. We so much hope that nothing infectious is going on and that they can reassure us that it’s definitely not GVHD. The feeding issues are totally on the back burner for now as we try to get him some help for his skin. Thank you.

Well, Dr. Filipovich is back in the country:   she’s already heard about JT’s skin troubles and she wants to see him in Cincinnati this Wednesday. This means three weeks in a row of Cincinnati trips for Jodi and him. Translation = exhaustion for them both. However, we’re actually a little relieved. The folks in Cincy mentioned Graft-vs.-Host-Disease to Jodi as something on their minds; that wasn’t something we’d considered. The rash is simply terrible, really awful, the worst it’s ever been and it’s been bad before. We have to know if there’s anything going on and if there’s a way to help him.

So they’re gearing up for another trip. Please pray for some answers and some help for him. We’ve almost forgotten about the feeding issues because the skin issues are so bad.&a ...

Please pray for JT’s skin.  His rash is truly horrible; this current flare-up is taking place right over top of the last flare-up which hasn’t healed yet. In between the multitude of sores his skin is now a bright red, something new. Also, he tells us that his feet and legs are hurting him which is something else brand new. He even told Jodi that he “couldn’t breathe” two times yesterday. So she has been on the phone with Cincinnati several times this weekend as our level of concern rises. We discontinued the new antibiotic and I believe the docs are thinking that these new symptoms could all be a drug-reaction. However, his skin is really awful and we don’t know what is precipitating these violent outbreaks or how to help him. For the most part he continues in decent spirits but he complained more today than is usual for him. We’re hoping and prayin ...

Great day – our good friend Mr. John is here and we all went out to the Sandy Creek Trail to take an evening bike ride…the boys and I saw a porcupine and we all saw several beavers swimming in the creek. The boys each threw a few rocks down into the river and ran most of the way across the Belmar Bridge. It was almost completely dark when we arrived at the tunnel but luckily John had brought each of the boys a flashlight for a present so we were saved. The leaves are at their peak…it was a beautiful and very enjoyable night.

JT’s rash looks like it’s gearing up for a fresh incarnation. This is discouraging because it’s gone on for so long now. We started the new antibiotic today and so far, so good. Please keep praying for skin relief. Thanks.  

JT and Jodi rolled in about 11:30 last night safe and sound. The rash still looks pretty bad though it’s not as bad as it has been. This evening Jodi realized that the medicine they prescribed for JT is in the penicillin family and JT is allergic to ampicillan so we’re going to double-check tomorrow with his doctors before we administer the first dose. Otherwise he’s still tolerating the bolus feeds well and showing big interest in food even though he spits it all out. Thanks for continuing to check in on us.

Tonight our hearts are heavy with the news that Jordan Jack’s struggle in this life is over. Please pray for comfort and peace for his family, especially his parents and sister.  

Well, here’s the report I got over the phone: accessing the port went well but it’s upsetting to JT and he now seems more afraid of going into the hospital than he has in some time. His IGG levels were just okay – the doctors want to see him every other week for the foreseeable future. Rats, more trips to Cincinnati. His neutrophil counts were a little low but they hypothesized that this may be due to the skin flare-up. 

Jodi said everyone was a little shocked at how bad his rash looked and she had to tell them that it was actually somewhat improved. Dr. Bleesing thought JT’s skin might have an impetigo or staph infection so he switched up his antibiotic coverage to a drug we have to give three times a day instead of every other day. Obviously, this is a prayer request, that his skin will clear up and be healed, no infection.

O ...