Jodi and JT were in Cincinnati yesterday and the treatment picture is finally coming into focus…

 

The last month has been a difficult one for us. Between the preparations, the delays, the mixed messages, and the last-minute cancellations, we’ve had ample time to ponder the proverb, “Hope deferred maketh the heart sick.” Our hopes have been on hold and it seemed like we might never get through. 

 

Finally, yesterday, both good news and a plan for going forward. Hallelujah!

 

Starting with the incremental victories: JT is slowing expanding his diet. He will now swallow instant oatmeal, Kix and Cheerios cereal, raisins, and ketchup. In the hospital yesterday, he even swallowed two bites of hamburger for the feeding specialist. These gains are huge and we’ve very proud of his progress.

 

Next Tuesday, he will undergo surgery to remove the G-tube and place a “Mickey button.” The button will allow us to continue administering feeding boluses directly into his stomach but he’ll no longer need the eight inches of tubing currently protruding from his belly. He’ll be able to bathe much more easily and I’ll be more relaxed when he and Justy wrestle. Frankly, I am relieved we’ve made it this far without the G-tube featuring in a brotherly bout of tug-o-war.

 

And onto bigger news...yesterday Jodi met with the woman in charge of the new photopheresis machine in Cincinnati. It’s amazing. Cincinnati will be one of three sites in the country that can offer the treatment JT is going to be receiving. It is ultra-high-tech, beyond my comprehension for sure.

 

But after talking to Jodi I do understand three important pieces of information. First, they want to start with the worst cases, the kids who need the treatment the most. JT is on the top of that list. We knew that his GVHD was serious but it’s sobering to be reminded. Secondly, Jodi saw some “before and after” pictures of other patients who have received the treatment. She said it was unbelievable. I wish I could have been there too – people with hard, red, cracked skin before the treatment and smooth healthy skin after several months of photopheresis. When Jodi asked if the scarring on his face might actually go away, the woman said “Yes.” These pictures and this news have given us a new infusion of hope.

 

And thirdly, we have a definite start date: Wednesday May 28. This one actually seems like the real deal. Jodi has already booked a room for a two-week stay in Cincinnati; however, since his treatments are scheduled for 1:30 pm, on M/W/F, they hope to be able to come home for the weekends. This is welcome news, especially because we think it’s very possible that the doctors will want to continue the therapy once they get it started. We anticipate that the initial two-week stay may be lengthened, depending how quickly he responds.

 

The other big piece of family news: yesterday Dr. Filipovich gave us the green light to take a family trip over Memorial Day. My parents have a time-share on the beach in South Carolina and we haven’t been able to go before; we haven’t traveled nearly that far from home since JT was born. But our doctor said she thought it would be okay. So Jodi has ordered JT a full body-suit, a special hat, shoes, and gloves to provide him total protection from the sun. It’s all made out of high-tech sun-blocking material. Since he doesn’t sweat we plan to get up early, nap in the afternoon, and get out again in the evening. It will be a short trip and lots of driving, but our boys will soon have a chance to see the ocean. We’re all pretty stoked.

 

As it works out, JT will go straight from this little vacation to Cincinnati to start the photopheresis. These are two major causes for celebration and they’re coming right up! Things are looking brighter and brighter around here…

 

Thank you for checking up on us. We’re grateful for your prayers and support.