It’s been two months since our last update, and I wish I could say it’s because we’ve had nothing to report. In truth, life has taken over. As you know, Melissa left her job—a decision that brought her much-needed relief, even if it came with financial uncertainty. Her old job was wrapped up in so much stress, especially with the CEO’s financial problems at the company. Sometimes it feels like a cruel joke that just as one storm clears, another is already brewing on the horizon.

Summer has been a whirlwind for Devin, too. It’s one of the busiest times of the year for his business, which is why he’s had little time to update this journal. But, we’re here now, and so much has happened that we need to catch up on.

Owen’s New Look

We began this stretch by shaving Owen’s head. It was a decision we made to help with the patchy hair loss he was dealing with. We were prepared for it to be emotional, but Owen faced it with his usual resilience. He was enthusiastic, like it was just another adventure. It was only later, after a day spent with his cousin, that the weight of it hit. He came home upset because his cousin didn’t like his hair. I think in that moment, it became real for him—this change in his appearance, a piece of his identity. But we sat down with him, told him how handsome he is, and he seemed to find comfort in that. He’s so strong, and yet sometimes I wonder how much of this he just quietly absorbs, processing it in his own way.

Meanwhile, our house has turned into a Lego city. Building has become a kind of therapy for both Owen and Melissa. Every few days, a new (used) set pops up, and they work together to create something beautiful. It’s funny how these little things—stacking plastic bricks—can help carve out a bit of normalcy amid the chaos.

A New Treatment Option: The Blincyto Decision

The biggest change, however, has been the introduction of a new drug into Owen’s treatment: Blincyto. It’s an immunotherapy designed to reduce the risk of relapse in kids with B-cell leukemia, bumping his chances from 83% to 88%. On paper, it was an easy decision—of course, we want to give Owen every chance we can. But the reality? That’s been harder to face.

The first challenge was a three-day hospital stay to monitor him for any reactions. Being back in the hospital wasn’t easy for Owen. It stirred up old memories—he seemed to fall into a quiet depression, clinging to Melissa as if she was the only safe thing in the world. PTSD is real, even in kids this young, and it hurts to see him carry that. Thankfully, Myrna, Owen’s Nana, came to help. The hospital’s updated policies meant more than two people could stay in the room this time, which made it easier on all of us. We had a bit of a system worked out, with Mom and Nana taking turns, and Devin stepping in when he could to offer some relief. Owen even won Hospital Bingo twice, picking out his favorite toys as prizes. Those small moments of joy mean everything right now.

Once we got home, Owen adapted to his new “Blina bag” like a champ. It’s a continuous infusion he has to carry around, even while sleeping. He’s taken to it as if it’s just part of his body now.

No more normal baths, but that hasn’t stopped him from finding ways to make it fun.

The home nurse comes by weekly to change his dressing and take blood for labs. The dressing changes are tough—Owen hates having the big sticker pulled off, only to have another slapped right back on.

But we’ve created a little ritual where, after the nurse leaves, we head to the treat store and let him pick out his favorite candy. It’s these small wins that keep us going.

Of course, it hasn’t been without its hiccups. One night, right before bed, we discovered that Owen’s bag had sprung a leak. We had to scramble to meet a nurse in Salem to get it replaced, knowing that if the medicine wasn’t administered properly, we’d have to start all over. Another close call came at the very end of the 28-day infusion. We had to rush to meet the home nurse, who was at another client’s house, to change the bag before it emptied out. All in all, it worked out, but the stress of managing it all—especially with Owen’s regression in potty training—hasn’t been easy. That bag weighs on him in more ways than one, but we’re learning, adjusting, and preparing to do this all again in a few months.

What’s Next

This week, we were back in Portland for a routine check-up. Owen’s still in Delayed Intensification, which means his treatments are continuing every 10 days.

But there’s been a new concern—his liver enzymes. They’ve been elevated since early July, and they’re not coming down. His doctors are concerned enough that they’ve put in an urgent referral for a GI specialist. We’re scheduled for Halloween.

It could be something minor, just his liver being sensitive to the treatment. But there’s this looming fear of something more serious—liver fibrosis, maybe even early signs of liver failure. It’s terrifying, the thought that this treatment, which is supposed to save him, could be causing irreparable harm. But we’re holding onto hope. For now, we’re taking him to Riverbend twice a week for blood work to see if his liver can handle the next rounds of chemo. If not, we’ll have to pause everything until his liver calms down.

In the meantime, we keep going. We’re endlessly grateful to the friends and family who have stepped in to help. The donations we’ve received have covered gas, food, and the $400+ we lose when both of us have to take off work to be in Portland. Every bit helps, and we’re beyond thankful for the love and support that continues to surround us.

We’re tired, and there’s still so much unknown, but we’re here. We’re fighting. And most importantly, Owen’s still smiling. That’s enough to keep us going.

— Until next time, with love and hope.