07/01/2026
This week marked Jacob’s 21st clinical trial dosing of Ion363 (Jacifusen), and it was a stretch of days filled with relief, gratitude, and one terrifying moment that reminded us how quickly life can turn.
Because Dr. Kolb was out of town, our usual Monday appointment was moved to Wednesday. We headed to Columbus early Tuesday for Jacob’s optometrist visit, where Dr. Pisano gave us great news — the redness we’d been worried about was simply dryness, easily fixed with drops on the sclera. A simple solution, and a huge relief.
Early Wednesday morning we arrived at the Martha Morehouse Center for Jacob’s lumbar puncture. Dr. Kolb remains cautiously optimistic — scientific, steady, and hopeful — and praise the Lord, the procedure went perfectly.
By late afternoon Jacob felt good enough for a mall trip, leaving with new Crocs, sunglasses, and a Midland album. Back at the hotel, we settled in for a movie… and then everything changed in an instant.
During a routine trach suction, his respirator somehow powered off. When I turned back toward him, Jacob was ghost white — not breathing. We still don’t know whether it was a malfunction or something accidental, but Heather from Apria will be checking the machine. Thankfully, my wife stayed calm and yelled for the cough‑assist. It worked immediately, Jacob’s color returned, and I was able to power up the backup respirator. We won’t use the faulty one again until it’s cleared.
After that terrifying moment, Thursday’s quiet drive home felt like a gift.
Another dose behind us. Another hurdle cleared. And another reminder of how quickly things can change — and how grateful we are for every safe, steady step forward.
