08/23/2026
First, a quick and important reassurance: Caleb isn’t back at the hospital because of cancer.
He’s at Children’s for his tongue procedure — sclerotherapy. As he’s gotten older, the vascular malformation in his tongue has affected his speech and, with puberty, the spasms have become stronger and sometimes last for days. This procedure is meant to help him long‑term, and we knew swelling afterward was expected. That’s why they planned to keep him in the PICU for observation.
What’s been difficult is that the swelling didn’t show up right away. It peaked between 24–48 hours, and instead of improving, he told us a few hours ago that it feels about 30% worse. Because of that, he’s still intubated and still only able to stay awake for a moment at a time. When he does manage to write, it drains him — but he can communicate enough to tell us what he needs.
There was also a miscommunication with the medical team. While I stepped out, his PA thought he said his pain was 3/10, so they rushed to remove his catheter, thinking he might be discharged today and wanting to avoid infection risk. Later, when I was back, he “told” me the pain wasn’t 3/10 — he had been trying to say the swelling was 30% bigger and was misunderstood. So now he’s still intubated, still swollen, and also dealing with bathroom logistics on top of everything else.
But even in all of this, he found a moment to be himself. When Scott came after work, Caleb reached for his hand and immediately started counting down for a thumb war. It was small, but it was him.
None of this is what we expected. I thought we’d see more progress by now and that he’d be in the PICU for the planned 24 hours and then recovering. Instead, we’re back in a place that brings up a lot of memories — it’s almost exactly eleven years since his cancer diagnosis. It takes a lot not to let those emotions surface.
Pray for good recovery.
