HelpSamBeatLCHRareAdtCancer

Well- a ton has happened to get me to this point and the world is apparently getting moved to put me in Boston and Manhattan next month.

But today is the day- 

Radiation from Cleveland Clinic to zap BOTH of the skull lesions!

I’m not sure how it’s supposed to feel but I AM ECSTATIC!

It’s been over 2 months that I’ve wanted to blast this stuff and it’s finally happening.

side hope- killing this stuff makes my other crazy symptoms chill out for a few weeks to keep me strong. I could use a break from steroids- moon face is gross.

Next up: find out how Eli D. Or Eric J. Can kill the rest of it in my bones and organs. 

today was GOOD-

after 2 months of no real treatment- I was finally scheduled for radiation with Cleveland Clinic.

Longer story- I don’t have an doctor/capain- YET.

but…

almost simultaneously- my neurosurgeon looks me in my eye at the 6wk post op- and apologizes as he expands his surgical notes and offers to speak to the team in Boston and Manhattan on my behalf.

he proceeds “these cells didn’t show on the MRI or CT. What I saw when I opened was much larger than the scan showed. You had a ton of pressure and you’re in REAL pain. It pushed back at me like a tube of toothpaste directly from within your bone. You’re doing all the right things- you’re going to go, learn the things, and we’re going to help people here…”

I almost started crying.

The amount of validation from another person with eyes, who can support your quest to find and fix this stuff was beyond relief.

After a visit to the first specialist with experience in Adult LCH (there is only 1 who’s treated it in our area), we got a plan for radiation and genetic treatments that will hopefully give enough time for them to cure this thing.

In kids, chemo can cure LCH, but adults can’t handle the treatment so he won’t consider it an option. I’m grateful he cares about my quality of life and there are ways to feel strong even when my body doesn’t 💕

Just a picture of Kinley’s old lady reindeer tree for my sanity- not a fan of hospitals but Cleveland is great.

Thanks again to everyone reaching out….if curious - I’ll update here in lieu of social media because who wants to see this on IG..fb..🫣