Daddy checking in from Cincinnati…

It’s been a good week. Tiring for sure, but good. We left GC early Monday and arrived here around 12:30 for a full day of treatments. We had Tuesday off – JT and I headed over to Mt. Airy Park for some hiking and exploring and Disc Golf together. It was fun. 

But the heat overwhelmed him – when he became lethargic and had to sit down every few steps I knew that he had to get into the air conditioning fast. I carried him until I was able to sprint to the car and go back to pick him up where he waited in the shade. Both of us were diligent about keeping him sprayed down with cold water but as I’m learning, that’s a management strategy at best and doesn’t keep the heat at bay indefinitely.

Back at the hotel he perked right up after a bath and some time in the A/C. We’ve been doing quite a bit of kung fu lately (thank you to the Thomas family, owners of the Guthrie Theater in GC, for making it possible for JT to see his first movie ever on the big screen – we watched Kung Fu Panda last weekend with balcony seating). The room at our hotel has a king-sized bed which makes an excellent sparring mat.

Yesterday was an eleven-hour day at the hospital featuring photopheresis and three different IV infusions. Today we are back for more, but after photopheresis we can go home.

And the big news is…next week we will scale back from a 4-day hospital routine to a 2-day rhythm. That means they’ll access the port fewer times and he’ll have to spend fewer days in bed, fewer nights at a hotel instead of at home. We’re stoked.

Dr. Filipovich had mixed news for us yesterday. Whereas Jodi and I were planning to send JT to preschool this fall, she let me know that this was far from a given. She’s going to do some immune studies in July to see how responsive his immune system is and we’ll go from there. It’s not completely out, but it’s not in yet either. More waiting.  However, his cells are showing signs that the Graft-vs.-Host-Disease is slowing down.  We're hoping that the photopheresis will bring healing to the skin, but that will take a long, long time.  The main thing is to get the GVHD stopped and we think this is happening.

Except for the heat, summer is a blessing. Jodi and I got out for our first date in ages last weekend – we went for a morning hike and grabbed lunch out together. I taught a great graduate class last week and it’s good to be able to take a turn in Cincinnati this week. Life is good.

Thank you to the good and generous people who have been so kind to us recently with your gifts and care packages. We’re very grateful.

Stay cool and keep our little man in your prayers. Thanks!