01/12/2026
Yesterday we were back on the road to Ohio State University for Jacob’s 19th clinical trial treatment (Jacifusen / ION363). Even writing that number feels surreal. When Jacob was diagnosed, we were told his life expectancy was 1–3 years… and that was four years ago. Yet here he is — still fighting, still smiling, still defying every expectation placed on him. Every trip reminds us of how far he’s come and how much grace has carried us.
We’re deeply grateful for this trial, for the team behind it, and for the chance it gives Jacob to keep moving forward. God has been faithful every step of the way, and we don’t take a single day for granted.
We made it safely to Columbus, and the day kicked off with the blood draw. Mary — affectionately known as the “Blood Whisperer” — worked her magic once again. She’s one of the few who can get Jacob’s blood without a lot of trouble, and we’re so thankful for her steady hands and kind spirit.
From there, we headed into the clinic for the usual round of tests and prep before the lumbar puncture. It’s never our favorite part, but we walked in ready. Not long after, Dr. Kolb came in grinning, full of energy and optimism. He said Jacob looked fantastic — great color, strong muscle mass — and he even felt Jacob move both legs and saw his eyes move. His excitement was contagious, and it set the tone for the rest of the day. We claimed it right then: this is going to be a GREAT day..
After all the poking, prodding, and medical hurdles, Jacob decided he’d earned a reward. So we went to see Zootopia 2 — and we were the only ones in the theater. The movie was great, and the quiet, private showing felt like a little gift at the end of a long day.
God is good. Our team is incredible. And we’re grateful for every single day Jacob gets to keep fighting!
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