10/27/2025 Treatment #18: ION363 PHASE III #3

10/27/2025 Treatment #18: Courage, Community, and a Springsteen Surprise

We rolled into Ohio State University on Sunday with hearts full and spirits high—ready for Jacob’s 18th #Jacifusen treatment. These visits have become familiar, but never routine. Each one carries its own weight, its own prayers, its own quiet hope.

Jacob was ready. We were ready. And once again, Dr. Kolb and his incredible team met us with warmth, precision, and care that goes beyond medicine. The dosing went smoothly, and Jacob entered recovery with strength and peace. He rested for three hours while we reflected on how far we’ve come.

But this trip held something new.

Jacob wanted to go to the movies.

Since the tracheostomy, outings like this have been rare. We’ve learned to adapt, to simplify, to choose rest over risk. But this time, Jacob had a request—and it was "Springsteen: Deliver Me From Nowhere". So we said yes.

We didn’t know how it would go. But we knew it mattered.

And it was beautiful.

Afterward, we went back to our hotel and watched Monday Night Football, and enjoyed a great night's sleep. Tuesday, we made the long drive home, the kind of ride that invites quiet reflection. Jacob did great. He’s resting now, watching a little TV, and we’re holding onto the grace of the day.

We love OSU. We love our team. And we love the moments—big and small—that remind us Jacob’s story is still unfolding, full of surprises, full of strength.

10/16/2025 Dunbar Medical Check Up

10/16/2025

We had our 6 month check up with Dr Trump today. Everything is perfect. Blood pressure, oxygen levels, pulse, temperature, everything! Jacob continues to be amazing!!!

10/14/2025 Caregiving is no small task.

10/14/2025

Caregiving is no small task. It’s a journey filled with constant responsibility, and sometimes, one slip-up can feel like the world is crashing down.

Last night, I followed our usual bedtime routine with Jacob — removed the eyelid tape and got him settled in. But this morning, he woke up complaining that his eyes hurt and asked for drops. A few hours later, his eyes looked awful. I immediately messaged Dr. French, who said they looked very concerning and wanted to see Jacob that afternoon.

By 2pm, Barb got home and realized I had forgotten to take out Jacob’s scleral lenses the night before. They’d been in for nearly 20 hours. I was devastated. I cried and cried — I couldn’t believe I’d missed something so important.

But through prayer and grace, what seemed like a serious issue turned out to be a fixable mistake. Dr. French prescribed antibiotic drops, and Jacob should be back to normal in a day or two.

Lesson learned — this dad won’t be making that mistake again. 🙏

10/02/2025 Blood, Blood, and more Blood

 10/02/2025

When the Cough Assist Pulled Blood: A Night We Won’t Forget!

Tonight was supposed to be quiet. We’d just returned home from the Eastern Star event—grateful, tired, and ready to settle in. But caregiving doesn’t follow a schedule. As part of our routine, Barb and I decided to flush Jacob’s tracheostomy, a technique we learned from Dr. de Silva that’s been a game-changer in keeping his airway clear of bacterial buildup from saliva and mucus pooling above the cuff.

What happened next shook us.

As we flushed the trach and engaged the cough assist, it pulled a startling amount of blood. Not streaks. Not tinges. Blood. It was all Barb and I could do not to panic. We stayed calm on the outside, but inside we were terrified. I messaged Jeremy Cobb immediately and asked him to call me as soon as he could.

He called within fifteen minutes—bless him—and by then, the bleeding had already begun to ease. Jeremy explained that sometimes the cuff can adhere to the inside of the throat. When you deflate it, it’s like peeling skin off your lip. It bleeds. And when that blood mixes with mucus and saliva, it looks like far more than it is. A teaspoon can look like a pint when it’s running fast.

We monitored Jacob closely over the next few days, suctioning often and watching for any signs of distress. Thankfully, the bleeding subsided. Four days later, during the next flush, we were able to clear out the old blood and restore everything to normal.

This wasn’t just a medical moment—it was a spiritual one. A reminder of how fragile and sacred each breath is. A reminder of how quickly fear can rise, and how grace can meet it. We’re grateful for the wisdom of Dr. de Silva, the calm reassurance of Jeremy Cobb, and the strength that carries us through nights like this.

10/02/2025 Eastern Star Donation

 10/02/2025

We are deeply grateful to our generous donors, The Order of the Eastern Star, for their extraordinary gift. Today, they presented a check for $16,742 to ALS United Ohio in honor of Jacob.

Their tireless fundraising efforts will bring vital support to hundreds of individuals and families facing ALS—offering hope, resources, and strength to those on the frontlines of this journey.

Thank you for making a difference that truly matters! TeamJacobWV are making an impact on the world around us!