What we do and don’t know

 I took his battered hand in mine as we walked from hospital to parking garage this afternoon. He’s unsteady on his feet. Still heavily medicated. Staying on high doses of nausea meds from a stomach that hasn’t balanced out from the trauma of two days ago. But he’s gaining ground. He’s regained his dexterity, playing guitar yesterday evening after waking up to not being able to so much as open a bottle. His speech is improving, though still lagging a bit, but that’s mostly from the sedative qualities in his current seizure meds.
You are probably wondering what’s next for him, if there’s anything to be done, or if this marks the beginning of the end-some symbol of rapid tumor growth. To you I’ll say the same thing I have heard the Lord whisper to me over and over again: No man knows when death will come. You don’t need a timeline to live and love well right now.
From the basic images taken at the ER, his tumor looks the same (as much as can be understood with a different type of scan) as his February images. There is no known cause for the shift to grand mal seizures from what he’s been dealing with all this time. The best guess is that long-term uncontrolled seizures can get worse with time. And that’s what we think has happened.
As far as treatment options go, we’re working on some complexities, trying to get a lot of bits and pieces to fit just so into the puzzle that is getting access to the right kind of care. He is sensitive to medications in unsustainable ways, so we are focusing on other options…surgeries, therapies-things not covered by insurance.
I’ve said before in this space and on the blog that I am always singing. The song varies, but in the ER and in the night now when I cannot sleep for hearing the sound of Jesse’s gasping, shallow, guttural breathing I heard during his grand mal’s, the lines repeating in my head are these:
“O, what can take away
My hallelujah
No darkness can contain
My hallelujah
Your cross has made the way
For my hallelujah
You give life
No man can take
No power in hell
Could separate
And who can stand
Against Your might
With armies of angels
By my side
So I will run into the waves
As courage comes to take fear’s place
With perfect love, perfect love”
-“My Hallelujah” by Bryan & Katie Torwalt
-May 10, 2019
Jesse asked to go to the zoo after his appointment, a long time safe place for him in stressful moments. He had a small seizure and my sis snapped this pic in the aftermath.

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