I’ve been meaning to write this post all summer, but kept delaying it because I wanted to wait to write it until I had something to post about Bodie’s ITP treatment. And, that, unfortunately, didn’t really improve until the end of the summer.

This kid has been such a trooper.

We’ve been making weekly trips down to Rady Children’s Hospital for labs and N-Plate injections for his ITP. After seeing an initial little jump to 25,000, his platelets leveled out in the 20,000s by early July, and sat there until last week. As a result, we weren’t clear to go to Stanford for his annual cath and biopsy, or to Tahoe for our annual family vacation…or anywhere, really.

It was a better summer than last summer, to be sure. But let’s be honest – that bar saw set pretty low. Even so, Bodie was bummed. He just felt like he lost 2 summers in a row. We did what we could – we played a lot (and I mean A LOT) of Pokemon Go with him, driving to local community meet-ups and walking a lot to catch cool creatures. He managed to get Dusk and I almost as addicted to Pokemon as he is (almost). We also tried to do fun things like trips to Menchie’s (his absolute favorite) after his appointments.

Since he had stabilized at 25,000 without major bleeding incidents, his Hematologist cleared us to do a day at Seaworld. She cleared him for all of the nonagressive rides. I’m not 100% sure her definition of nonaggressive is quite the same as ours, and we probably took a few liberties, but it was so worth it to see this smile!

We also got to take a 3 day trip to Palm Springs last week, which was a wonderful respite. Not nearly long enough, but at least we had an opportunity to take a break from work and spend some quality family time together.

At Bodie’s appointment last week, he had finally hit max N-Plate dosage, and his platelets had jumped to 70,000! It was amazing and exactly what we were hoping to see happen! His doctor was so excited. We’re hoping that’s where they’ll sit now, and it’s exactly where they want him as long as he’s getting the injections (normal is 150,000-400,000, but with patients on platelet stimulating medications like N-Plate, they don’t want them that high due to risk of overcoagulation.

Now we wait to make sure they stay in the range we want.

Then, we can go to Stanford for his annual cath and biopsy (they had been planning on doing something less invasive due to his lower platelet count, but now that he’s higher, I think they’ll want to do the regular annual testing).

After that, it’s anyone’s guess what the next steps are. N-Plate isn’t really a long-term solution, as driving an hour to the hospital every week forever isn’t exactly a good quality of life. If the medication continues to work well for him, we can consider switching him to an oral version of it, but it doesn’t always work the same as N-Plate, and there are dietary issues with it (calcium affects absorption of the medication). So we’ll hold off on that discussion for now. One step at a time. His team may also consider switching up his immunosuppressants to see if they’re causing the ITP. But before doing that. they’d need to do a cath and ensure everything looks good with his heart. Preservation of this special heart is our most important goal. Everything else comes second. So, again, one step at a time.

In the meantime, we’re breathing a little easier, even if it meant Bodie didn’t get the summer he wanted. He’s experienced a huge growth spurt, gaining 25 pounds since April and at 5’9 1/2″ is neck and neck with me (and is now shaving, but I didn’t tell you that)! His body is clearly in a happier place right now.

He started school last week. In true high school boy fashion, he refused a good first day of school picture. This was the best I got.

Wouldn’t even put his shoes on. But I’m choosing to pick my battles.

He’s cleared for heart camp, and we drop him off for that next week. But first, we drop his sister off for college! Big changes around the Bennett household.

We covet your continued prayers that Bodie’s platelets stay in range, further interventions won’t require him to miss much school, and we all adjust to our new family dynamic with Sierra off to college!