This was Malachi barley 24hours before his 157th brain infusion (Thursday November 6. 2025) we were just about to announce his first Art - display showing scheduled in February Rare diease month in Wenatchee at Watercore Cider! We will fight to make sure he gets this moment.... (his fit by Aaron Davis)

Next day life changed.....

Today marks one full week. Seven (7) days of watching Malachi fight through pain, missing half of his 157th brain infusion, being rushed from infusion to the ER, then straight into the IUC and prepped for emergency brain surgery.

In that time we’ve watched them remove his 6-year-old  brain port and his 4-year-old chest port system..… and we’ve watched him battle a meningitis brain infection, a chest tissue infection, and bloodstream infections.

PRAISE GOD — the infection did not reach his heart. His organs are functioning well. And somehow, even through everything, he still finds moments to smile, share the most interesting stories, and throw in his signature comical banter. We get glimpses of him all the time. Those moments keep us breathing.

None of this feels real. There was absolutely nothing we could have done to prepare for this. We thought we covered every base. We thought it was just another routine bi-weekly infusion… until his CSF came back cloudy, his pain shot through the roof, the call hit my phone of him screaming, and the vomiting began. Everything happened instantly. It all went straight into the “unknown” category.

Today, we’re still fighting to control his post-op pain.
Today, he has more vision disturbances.
Today, we don’t know if this is his new normal.
Today, we don’t know what missing half that infusion means for his brain.
Today, we don’t know how to move through this gracefully — except to call for action /help. Prayer, financial support, needed drop-offs, healthy visitors, even a meal that isn’t from the hospital cafeteria (though I’m barely eating). It’s all hard to process.

This morning the team shared that the next hurdles are going to be difficult to navigate. I asked them to please reach out to our Batten’s Disease Center of Excellence at CHOC in Orange County — Dr. Ray Wang  and Olya — because Malachi could be battling both these infections and the impact of missing Brineura, the drug that prolongs his life. We are in uncharted territory. No one with CLN2 Batten’s, at his age, has gone through this exact situation.

So I’m pushing for collaboration. One team may not understand Batten’s, but another does — and together they might see something we /they can’t. Teamwork is everything when it comes to helping these kids.

Thank you to everyone praying, sharing, fundraising, and helping ease the weight on our already overflowing plate. It means more than I can explain.

I’m going to try to step back from updates for a few days, process what’s happening, and breathe before chiming in again. Next week is infusion Friday. We’ll prepare Maleea… but for the first time in years, it may not be Malachi receiving his.
Right now I’m here alone. Maleea is with family. My husband is taking a much-needed reset before returning. As for me — I cannot step away. 

This is my firstborn fighting for his quality of life. I’m that caregiver, that momma bear, that covering. It’s who God made me to be. And I’m okay with that. He provides me with moment of strength,  wisdom 

What I am deeply grateful for is this small community we moved to a year ago — a place where people met Malachi and instantly loved him. He got to live a small-town dream: his favorite bakery VonHart Goods - Bakery & Deli   and owner Sarah, his barber Chris Cruz Fam @Valleybarber in Manson , to meeting EMTs and firefighters who welcomed him, to meeting new people all the time,  making new friends at the  secret lair The Secret Lair at Lake Chelan   while learning how to play cards & chess with the owner, new little friends taking him fishing, little friends asking him to come to watch there soccer games, to Vicky the towns lifeline for lifeguard training and endless lake days, healthy walking trips, getting best tan in town, and his bi-weekly burger /steak at Lake Chelan Brewery  Chelan Brewery with his favorite waitress Shannon Turner Shannon Turner — which he can price out to the penny, to his love for his favorite apples & cider via @ciderpress  and his second momma watching out for him constantly Mrs. Maribel and my beautiful family showing up for Malachi/parents/cousins/brother /bro in law & sister in law, Willie Lucas Jr Christa Lucas Justin Lucas Leanne Davis Ben Davis ❤️ Kris Meyn Carolina Sommer  family...friends 

These memories are treasures. They are gifts we didn’t know we’d need, but he absolutely desired & got.

Thank you ❤️ everyone....