Cancer, Coping, and the Every-Day Maces

I’ve been struggling to write this blog post for a week now. Everything is fine- the biopsy was fine. Things were scary the day after, and I rushed to Tulsa. We have amazing friends and family who did all the things we needed. We really felt prayers, and suddenly he had a completely normal CT scan with no fluids, no damaged nerves, etc. Recovery is slow and things might just be different now- a right-side facial droop, loss of right side hearing, and balance just good enough to walk with both hands out. The thing is… I think I’m just tired of having cancer rule my life, my conversation, my writing. Earlier on, I had the energy to maintain some other spheres of life: a little volleyball, some church service, early morning walks. Now, I’m just so tired, and there’s not much for me to say/do/think BESIDES the ways DIPG has upturned our life. I could skip 7/10 of my conversations if my forehead just read the following: Yes, we’re still waiting to hear from Stanford. Yes, we did decide to r

Hyrum and Michael are in Tulsa (2 hours away from home), receiving care from the best neurosurgeon in the state. They're removing a tiny portion of his tumor so they can determine whether it hosts a specific protein, one that drives the majority of DIPG tumors. They're also inserting a port into his skull- one that connects with a ventricle of his brain and will allow for infusions at Stanford. They've been there since yesterday morning and will remain until tomorrow afternoon. I'm at home with our younger kids. Phone calls, house selling/renting stuff, laundry, swimming, painting, playing with hippos. The usual... but the house feels quiet without our other two. This morning, I thought about my college days. I rushed. I planned. I played and joyed genuinely, but always tentatively, because wasn't there something else I should've been doing? "Gotta keep my mental channels open to the details I'm surely forgetting..." The constant thinking, strainin

Sometimes you can feel a season ending, and it hurts. I've waited so long for the details and plans surrounding Hyrum's clinical trial, and we're finally getting there! It's not the "red light, green light" situation I expected, but we're working through layer after layer of approvals so that Hyrum can be treated at Stanford. It's probably the BEST clinical trial in the country right now, and if all continues as expected, we'll be there in the fall.  That said, this week it finally hit me: the closer we get to securing a clinical trial plan, the closer we are to leaving this perfect summer. This perfect place. 18 months ago, I couldn't explain why I felt a sudden, urgent need to move away from Utah. There was no "real" reason to choose Oklahoma. We bought our house without ever seeing it in person. But, just weeks after arriving, I found myself rocking Emily in our kitchen, crying quietly because this is a place my soul already knew.