Tuesday, July 14, 2026

07/15/2026 Our Two‑Day Adventure to See Big Boy 4014

 07/15/2026

When God Redirects the Journey: Our Two‑Day Adventure to See Big Boy 4014

Most of you know that since he was a baby, Jacob has loved trains — not just loved, but absolutely adored them. He could identify steam engines by their whistles before he could even pronounce half their names. So when Union Pacific restored the legendary Big Boy #4014 for America’s 250th birthday and sent it across the country, we knew we had to try to get Jacob in its presence. This wasn’t just a train to him — it was a once‑in‑a‑lifetime dream.

Day One: The Heartbreak in Fostoria

We woke up at 6 AM Tuesday morning and made the long drive to Fostoria, Ohio, where Big Boy would be on display from 9 AM to 3 PM. We arrived at 1:30 PM… only to find traffic backed up for miles. We inched forward for nearly three hours, crawling through a three‑mile stretch of cars.

By the time we reached the train yard, it was almost 4 PM — and the exhibit had just closed.

We explained Jacob’s situation. We explained the long drive. We explained that he has ALS and that this moment meant the world to him. But there was no empathy, no exception, no “let’s see what we can do.” We were simply turned away.

To make matters worse, even viewing the train from a distance was impossible. A large white tent had been set up for an employee event, completely blocking any view of the massive locomotive.

We drove to our hotel an hour south of Fostoria, and the van was filled with disappointment. At one point we looked back and saw tears rolling down Jacob’s cheeks. That sight broke us. We knew we had to find another way.

The Community Responds

I posted a short message on Facebook about what had happened. Within minutes, messages started pouring in — people trying to help, offering ideas, making calls, doing whatever they could to help Jacob see Big Boy.

We decided to drive another hour northwest to Continental, Ohio, where the train would stop the next morning for 20–30 minutes before heading to Fort Wayne.

I called the mayor’s office and spoke with Cindy, who was incredibly kind. She couldn’t guarantee anything, but she told us the bank across from the tracks had handicap parking and that if we arrived early, we’d likely get a spot.

I posted that update — and immediately got a call from Joey Stevens, our youth pastor at Winfield Baptist Church. Joey was thrilled we were heading to Continental… because he used to live there. His wife Christie worked at the bank — with the mayor, who was also the bank president.

Within minutes, Christie made a call, Joey made a post, and suddenly we had a guaranteed handicap spot as long as we arrived by 10 AM.

Day Two: God Opens a Better Door

We woke up at 5:45 AM and arrived in Continental at exactly 8 AM. Our spot was waiting for us — reserved, protected, and perfect.

And this town… this town is filled with some of the most wonderful people we’ve ever met. True salt‑of‑the‑earth folks. We instantly fell in love with them.

We met Joey and Christie’s family — her parents, her sister, her niece — all of them came out to meet Jacob and spend time with us. We met an older couple from North Carolina, and a gentleman originally from Poca, WV. Everyone was kind. Everyone was excited for Jacob.

The police told us that if we stayed under the shade tree, we wouldn’t be able to see the train because the street would fill with spectators. They encouraged us to move right up to the tracks — and we did.

But the heat was brutal. Jacob’s skin is extremely sensitive now, and we were worried about sunburn. Around the corner was Okuley’s Pharmacy & Home Medical Equipment. They were closed for the train’s arrival, but the door was unlocked, so I stepped inside.

A gentleman told me they didn’t sell umbrellas, but he thought they might have some old ones in the back. A young lady went to look — and came out with two very old umbrellas, probably from the 1940s. They gave them to us with a smile.

We strapped one umbrella over Jacob’s torso and one over his legs, and his little battery‑powered Menards fan kept him cool in the 93‑degree heat.

The Moment God Had Waiting for Him

When the train was close, someone up front shouted, “Let’s move aside and let this young man up front!” And the crowd parted like the Red Sea.

Jacob had a front‑row seat to the greatest, largest, most powerful steam locomotive in the world.

He saw it arrive. He heard that thunderous whistle — multiple times. He watched it depart, pulling its full consist behind it.

I filmed the entire thing so he can relive it anytime he wants.

God’s Timing Is Always Perfect

Looking back, it’s clear: God closed the door in Fostoria because He had something better waiting in Continental.

He used His people — Cindy at the mayor’s office, Christie and Joey, the folks at Okuley’s, the Continental community, and yes… even the ones who turned us away. Because every step led us to the moment Jacob was meant to have.

God loves us more than we can ever understand. And He always has a plan — even when we don’t see it yet.

“Trust and obey, for there’s no other way, to be happy in Jesus, but to trust and obey.”





Wednesday, July 1, 2026

07/01/2026 TREATMENT #21 ION363 PHASE III #6

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.



Monday, June 22, 2026

06/23/2026 More Eye Redness and Irritation

06/23/2026

When we pray specific prayers and tell the Lord exactly what we need, He is faithful and always answers. Sometimes we may or may not know what that answer is right away, but isn’t it amazing when you can see the answer almost immediately?

The first picture was Jacob’s eyes at midnight last night… The second is this morning.
Barb prayed specifically for his eyes last night!
Believe what you will, but…
“As for me and my house, we will serve the Lord.” Joshua 24:15



Sunday, June 21, 2026

06/22/2026 Bidet Turned Super Soaker

06/22/2026

Jacob's Massage Therapist, Pam, came over today to give Jacob his weekly massage… and left looking like she’d survived a water‑park ride she never signed up for.

At one point she went to the restroom. What she didn’t know is that years ago we installed a bidet seat for Jacob — and the handle sticks off the side in the exact spot you’d expect a flusher to be.
Well… Pam hit the “flusher.”
Except it wasn’t the flusher.
It was the launch sequence.
Our bidet has a delayed reaction, so she pushed the handle and nothing happened… at first. Then the little sprayer slowly extended itself out of the toilet like it was introducing itself. Pam, confused, leaned in closer to inspect this mysterious object emerging from the seat.
And that’s when the bidet said:
“Target acquired.”
It blasted her straight into Pam.
Shirt soaked. Floor soaked. Pride soaked.
She came out of the bathroom looking like she’d been baptized by a fire hose.
She said she couldn’t figure out how to turn it off, so she just slammed the toilet seat shut and surrendered. Barb had to clean the bathroom like we’d hosted a kiddie pool party in there.
Pam’s final words on the matter:
“I’ll just go to Sheetz from now on.”



Saturday, June 20, 2026

06/20/2026 CASS Parade of Steam

 06/20/2026

Since Jacob was 18 months old, we have taken him to "Cass Scenic Railroad" almost every year! He loves those Shay Locomotives, the steam power, smell of burning coal, and those beautiful one of a kind whistles! Since his ALS diagnosis, making the 8 hour round trip, with 2-3 hours onsite, has become increasingly difficult, but he was determined to go this year. SO...HAPPY West Virginia DAY!

On the parade's first pass... he cried. He truly loves that place and even had a job opportunity there, prior to the ALS.



Thursday, June 11, 2026

06/11/2026 A Special Gift

 06/11/2026

The Kind of Love That Changes Lives: Our Iowa Family

Many of you have heard us speak about the incredible Hermstad family from Iowa. Jeff and Lori are the kind of people whose story stays with you long after you hear it — a story marked by heartbreak, courage, and a love that continues to ripple outward in ways only God Himself could orchestrate.

Jeff and Lori lost their two beautiful twin girls to the same dreadful monster Jacob battles today — ALS, specifically the P525L gene mutation. Their journey has been steeped in unimaginable grief, yet somehow, they have chosen to turn that grief into compassion, connection, and purpose. And because of that choice, our lives — and Jacob’s life — are forever changed.

A Friendship Born from Shared Pain

From the very beginning of Jacob’s diagnosis, the Hermstads reached out to us. They didn’t know us. They didn’t owe us anything. But they knew our pain, and they stepped into our lives with open arms.

They have stood in our corner ever since — cheering, praying, supporting, and even driving all the way from Iowa to be here for Jacob’s Pioneer Award presentation in April. That’s who they are. That’s the kind of love they carry.

Jaci’s Legacy Lives On

Many people don’t realize that the clinical trial drug Jacifusion — the very drug keeping Jacob with us today — was named in honor of their precious daughter, Jaci. She bravely donated her own body so a drug that had never been tested on a human being could be tried.

Because of her sacrifice, Jacob is still here. There is no greater gift.

A Package on the Porch

This morning, a package arrived on our doorstep. When Barb opened it, we found the most beautiful, custom-made treasures from our Iowa family.

Inside were two handcrafted crosses — one for Barb and one for me — each with Jacob’s actual signature engraved on the back. (How Lori managed to pull that off… well, she is sneaky sneaky!)

And then there was the belt buckle.

Oh my Lord… the craftsmanship, the detail, the love poured into it. Anyone who knows Jacob knows how much he loves his cowboy bling. Boots and buckles were his everyday look before ALS tried to slow him down. This buckle wasn’t just a gift — it was a reminder of who he is, and who he has always been.

The Real Gift

But here’s the truth: The real gift isn’t the crosses or the buckle.

It’s Jeff and Lori themselves.

They are two of the most remarkable people God ever placed on this earth. Their strength, their compassion, their generosity, and their unwavering love have become part of our family’s story. They have walked through the darkest valley imaginable, yet they continue to shine light into the lives of others.

We will treasure their friendship all the days of our lives.

Love Is Stronger

God continues to weave people into Jacob’s journey who remind us that love is stronger than ALS, stronger than grief, stronger than fear, stronger than anything this world can throw at us.

And the Hermstads are living proof.

Their daughters’ legacy lives on — not only in the science that is saving Jacob’s life, but in the love they pour into others, day after day, mile after mile, heart to heart.




Saturday, April 25, 2026

04/25/2026 Jacob’s In‑Person ProjectALS Pioneer Award Ceremony

 04/25/2026 

Today Was Jacob’s In‑Person ProjectALS Pioneer Award Ceremony

It was one of those rare days that feels bigger than itself — the kind you know you’ll carry with you for the rest of your life.

The ProjectALS Pioneer Award ceremony was held this afternoon at Winfield Baptist Church, and it was nothing short of extraordinary. Margo, Sage, and Meredith from Project ALS flew in from New York to be here, and Lori and Jeff Hermstad made the long drive all the way from Iowa to spend the day with us. Their presence meant the world.

Between 250 and 300 people filled the auditorium — friends, family, neighbors, supporters, and people who simply wanted to stand with Jacob on this milestone day. The atmosphere was warm, emotional, and full of gratitude. Everything came together perfectly.

The Ridgeview BBQ was a tremendous success, and there was more than enough for everyone. It felt like a true community gathering — people sharing food, stories, hugs, and tears.

Over the past week, we’ve had radio interviews, WSAZ News Channel 3 coverage, and even a feature on the Saturday evening news, all helping shine a light on Jacob’s journey and the importance of this award. Seeing the community rally around him in so many ways has been overwhelming in the best possible way.

Today wasn’t just a ceremony. It was a celebration of courage, love, and the incredible village that continues to lift Jacob up.