05/02/2026
It has been a week. Out of all of our hospital stays, this one has been hard. It’s been up and down and up and down but I think we’re finally landing somewhere a little more stable in terms of a plan and (maybe?) answers.
Let me start from the beginning..ish.
Last Saturday, Tuff’s fontanel swelled…like, really big. We rushed him to Centralia because we’ve always been told that if this ever happens, it’s an emergency and we need to get to the nearest ER immediately. The staff did their best and were gracious with me (even with my intensity), but the reality is that hospital just isn’t equipped to handle a baby with such a complex condition. We got a CT done… and then we waited. And waited. Eventually, we signed papers so we could leave and drive him ourselves to Seattle Children’s rather than wait for an ambulance.
We knew we’d be admitted, so Chris and I threw what we could into the truck and made the drive for what turned into a very long night.
Fast forward a bit, hydrocephalus has now been ruled out more times than I can count. He has neurosurgery, neurology, interventional radiology, and pulmonary hypertension teams all working together on his case. Surgery has been discussed multiple times, but as of now, it’s officially off the table. Phew. Thank you, God.
His fever finally broke Tuesday night, which felt like a huge win. But Tuff likes to keep us on our toes and nothing is ever easy…his labs have been all over the place, especially his ANC (absolute neutrophil count). For those who don’t know, ANC measures the number of infection fighting white blood cells in the body. A normal, person is above 1,500. Tuff’s has dropped from 1,500… to 500… to 100… and the last couple of days it’s been hovering in the 400s. That’s dangerously low.
His other counts have been somewhat okay, but I asked the attending doctor point blank tonight if we’re looking at leukemia. It’s been brought up throughout the week. She said no but she is consulting hematology because of how low his numbers are. If this isn’t being caused by some kind of virus (and he has tested negative for everything), then we may be looking at an autoimmune issue.
On top of that, he’s developed a rash which has since gone but it’s the same type often seen in kids with leukemia.
And as if that wasn’t enough, meningitis has also been on the table all week. A spinal tap sounds simple (ish) but for a child with Tuff’s vascular condition, it’s not. It can change the pressure in his brain and potentially create serious complications, so it’s been treated as a last resort option. However, he’s presenting very well and not like a baby with meningitis.
Meanwhile, his head circumference has been increasing…about half a centimeter almost every day since Monday.
So… fast forward again.
Because of the rapid head growth, he had an MRI last night. We spent the entire day on edge, preparing ourselves for the possibility of surgery. But once again…no hydrocephalus. Instead, we learned that this kind of rapid growth can actually happen after multiple embolizations due to pressure changes. Neurology, neurosurgery, and interventional radiology all agreed that he’s stable enough to go home and be monitored weekly by our pediatrician.
Thank the good Lord for that.
But as it goes with Tuff, it’s not that simple.
We’re still here because of his ANC. Until we understand why it’s so low, we can’t leave. Right now, his immune system is gone.
It’s taken me forever to write this. Managing my anxiety while entertaining a mobile baby is no joke. Praying. Praying. Praying. I also apologize if you reached out and I haven’t answered you yet. My brain is trying to organize everything and if I’m being honest, my capacity for other people’s emotions is capped.
Meanwhile, Tuff is… incredible. He’s thriving in his own way, soaking up attention, learning to crawl, sitting up on his own, and even cutting his first tooth.
Chris and the kids are in survival mode too. We’ve had so many people rally around us, and we feel that deeply, but we’re all still just trying to keep our heads above water.
We’re not out of the woods yet. We still need answers. But we are taking the wins where we can. Please continue to pray for us. Pray for Tuff to be healed.
I’m wiped.
As always,
Tough like Tuff 💙💪🏻
