Daddy checking in this time and the first thing I have to report is…hats off to JT and Jodi for keeping up this schedule for the last couple weeks. When packing for Cincinnati, I brought a book and some discs: my fantasy vision of photopheresis involved reading in the afternoons, Frisbee golf in the evenings. Sometimes I really don’t get it. Instead, it’s been a whole lot of medical care, a little bit of sleep if you’re lucky.

Jacob is the bravest soul I know. He’s taken the port access like a hero, never flinching. All four days in a row. He’s experienced some bruising and skin breakdown around the site because they’ve been using the port daily but he doesn’t complain. Every dad wants his son to be tough, but life has asked an awful lot from this little boy and I am humbled and inspired at how he takes his challenges head on. If I sound proud, I am.

It’s been brutally hot here – too hot for hiking or much of anything else outside. On Tuesday evening JT gave me a one-hour tour of the Newport Aquarium. It was cool. The fiercest shark in the place swam right up to the glass in front of us and eyeballed us before opening his mouth and showing all of his teeth several times. He was only inches away and he was no joke.

JT and I did some research on the photopheresis process. Pretty interesting. The machine goes through 4 stages during each treatment. During the first three stages, it pulls off a quantity of his blood and filters out the white blood cells and then returns everything else. By doing this three times, it’s able to amass a good percentage of his white blood cells at once. During stage four, the white blood cells are treated with medicine and then exposed to UVA light, which then activates the medicine. After asking a few questions, I found out that the medicine is extracted from a plant called “Bishop’s Weed” that grows in the Nile River in Egypt. Though the plant grows elsewhere, they only use the Nile River variety to make the medicine.

This made quite an impression.  All this talk of Egypt and the Nile River has led to a new fascination with mummies. He’s into it. At the hotel last night, I was accosted by a mini-mummy wrapped in a bedsheet who wanted to wrestle. Actually, I think the exact words that came from beneath the sheet were “Bring it on, big fella!” It’s been fun.

So the photopheresis machine is in stage two as I write; when it’s done, we’re heading home. JT told me this morning that he wanted to see “Mommy and Justy” today – tonight we’ll be reunited for a three-day weekend together and we can’t wait.

The doctors are cutting down on his steroids – it will be a slow weaning process and we’ll have to keep a good eye on his joint mobility. It can take months for the photopheresis treatments to start showing real results. Please pray that this happens as we hope that it will.

Jodi and JT will be back here on Monday for another 4 days of treatments. We’ll be switching off weeks as the summer progresses.

Thanks for checking in on us and for keeping Treebeard in your prayers.