The following entry highlights Owen’s treatment during March, 2024…

It’s surreal to say this, but it’s been a full year since Owen’s port placement surgery and the whirlwind that was the early Consolidation phase of his treatment. In so many ways, it feels like a lifetime ago—and yet, the memories of those weeks are vivid, like they happened yesterday. The haze of trauma hasn’t fully lifted, but with distance, we’re starting to see it all with a bit more perspective.

Back then, we were running on fumes—physically, emotionally, financially. And honestly, we still are in some ways. But we’re steadier now. We’ve found our rhythm, or at least a beat we can move to. And Owen, that kid… man. He’s transformed our understanding of what resilience looks like.

A Flashback to That Week

Looking back at the days leading up to his port surgery, we remember just how heavy it all was. Owen had finally achieved “technical” remission after the Induction phase, and that should have felt like a victory—and it did—but the reality was more complicated. We were told this wasn’t the end of the war, just the end of one battle. The port was the next step in a longer campaign.

Owen was nervous, and who could blame him? We were, too. But kids are perceptive, especially our kid. He could feel the tension in the room, the whispered medical conversations, the way we couldn’t quite meet his eyes when he asked if something would hurt. That dinosaur toy they gave him before surgery—Velociraptor, if we remember correctly—became his armor. The screws, the little snapping parts, the satisfying click of the pieces coming together… it was therapy for him. And for us, watching him concentrate on something other than IVs and blood draws was a tiny mercy.

The surgery went smoothly, thank God. Ninety minutes felt like a hundred years in that waiting room. But the texts from the surgical team helped ground us. When we finally saw him again, sleepy and sore but alive and okay, the floodgates almost opened. Almost. We were too busy holding it together for him to let go ourselves.

Life After the Port

That port changed our lives in more ways than one. Sure, it made his treatments easier, but it also became this constant, physical reminder of everything we were going through. Bath time changed. Shirt choices changed. The way we held him changed. It was like we had to re-learn how to parent this brave little human, now with a medical device stitched under his skin.

At the same time, the community showed up in ways we still talk about to this day. That care package from Shannon and the daycare families? Unreal. It wasn’t just the stuff—though Owen still talks about the candy-pooping dog and that crocheted turtle—but the gesture. It told us, loudly and clearly, “You’re not alone.” We clung to that message in our darker moments.

And then there were the financial realities—$1,083 a month in extra expenses just to survive treatment. We can laugh now (kind of) at the insane math gymnastics we pulled off each week. Shoutout to GoFundMe, Venmo angels, and everyone who bought a pizza at that Papa’s fundraiser. You bought us time. You bought us margin. You bought us presence with our son.

And then there was Ground Control for that donation bomb that came out of nowhere. It was like a deus ex machina dropped into our narrative just when we needed a plot twist. Casey, Dan, Sam—y’all are family now, whether you like it or not.

Owen: Then and Now

The kid who once asked for pizza at 3am now insists on pancakes for dinner. The cravings from Dexamethasone eventually wore off, and his body rebalanced—though, for a while there, we thought we’d need a second fridge just for bacon. The chipmunk cheeks faded. His appetite is still pretty epic, but it’s no longer panic-driven or steroid-enhanced.

That said, the port site remained tender for a while, especially the first few weeks. There were tears, yes. From him. From us. From the cat, who was just annoyed with how old he had become. But Owen adapted fast. Faster than we did, if we’re being honest. And the port? It became a non-issue for him. For us, it was always a quiet presence. But for him? It just was. Another part of his body. No drama. No fuss. Just don’t touch it.

We also finally got him into PT to support the weakened bones and muscles from treatment. But of course, that eventually lead to a brand new diagnosis…

But we’re not naive. We know relapse is always possible. We know secondary complications exist. We know this story doesn’t end with a bell. That said, we’re learning to live in the in-between. Between scans. Between checkups. Between moments of anxiety and moments of celebration. It’s a weird purgatory, but it’s also real life.

Owen still has scars. So do we. But there’s laughter now—real, gut-busting, silly laughter. There are late-night dance parties and backyard adventures. There’s Hot Wheels on the kitchen floor and dinosaur roars echoing through the hall. There’s a family that has been to hell and back—and stayed intact.

Final Thoughts

A year ago, we were staring down the barrel of port placement, financial implosion, and emotional collapse. Today, we’re here—exhausted but hopeful, scarred but grateful, still broke (lol), but surrounded by love. And we’ll be forever thankful for all those who have showed up for Owen and our family.

If you’re reading this and walking a similar road: we see you. We’ve been you. And we’re still here, one year later, writing this not as a victory lap, but as a timestamp. A breadcrumb trail for others who might be following behind us.

To Owen: you are our greatest teacher. Our bravest explorer. Our favorite dinosaur-loving, spaceship flying, ramen-eating, giggle-blasting human.

To everyone who showed up for us: your kindness changed the course of our story.