Charlie's Ewing Sarcoma Journey

21/09/2026

Some thank yous aren't big enough.
Thank you to Lizzie Grace Charitable Foundation , Mason’s Cold Beer, East Mauch Chunk Eatery and especially Alice Ann Augustine for choosing my fight for your very first fundraiser at the Jim Thorpe Market. I’m truly honored to be the first.
To everyone who donated, helped, stopped by, or contributed in any way...thank you. 💛 I know I haven’t been as active lately. I haven’t been feeling well, and I’ve had to pull back a little. But knowing people were out there doing something for me while I was home… that hits differently.
October 1st is getting close. Closer than I’d like. So today wasn’t just a fundraiser. It was a reminder that even on the days when I don’t have much left to give, there are people willing to give something for me.
And that’s something I’ll carry with me.
Congratulations to Ed H. on the win! 🎉
And Alice… thank you for putting your heart into this

15/09/2026

update on Charlie’s breathing tests.
The person who performed the test went over the results with us, and he told us straight out "this is not good"
The testing showed that Charlie is having a serious problem getting air back out of his lungs. His lungs are also holding onto way too much air instead of fully emptying when he breathes out. One of those measurements was 250% of what would normally be expected. (Ex. the expected amount of air left after that maximal exhale is about 2.06 liters His measured 5.15 liters.) His DLCO was also severely low, which basically means his lungs aren’t getting oxygen into his blood as well as they should. His follow-up is scheduled for October 15th, but he’s on the wait list to get in sooner because we’d rather have these results looked at earlier if an appointment opens up.
Simpler breakdown ⬇️⬇️⬇️
Think of it like this:
A healthy lung might look roughly like:
Breathe in → 🫁🫁 → breathe out → 🫁
There's still some air left.
Charlie's is more like:
Breathe in → 🫁🫁🫁 → breathe out → 🫁🫁🫁
His RV is 250% of predicted. RV is the amount of air left in the lungs after he exhales as completely as possible .His TLC is 122%, meaning the lungs are also hyperinflated. He's trying to empty his lungs, but a tremendous amount of air is staying trapped inside
That creates a cycle:
Air gets trapped → lungs stay inflated → next breath starts with less room → more air gets trapped.

14/09/2026

Tuesday morning Charlie has a pulmonary PFT with an ABG.
For anyone who doesn’t know what that means, a PFT (pulmonary function test) checks how well his lungs are working how much air he can get in and out, how well he can move that air, and how efficiently his lungs are functioning.
The ABG (arterial blood gas) is a blood test taken from an artery that checks the levels of oxygen and carbon dioxide in his blood.
So Tuesday is another important appointment and another piece of the bigger picture. it also means we are officially 2 weeks from October.
October 1st starts with bloodwork, Charlie’s scan, followed by his results that same day and then a palliative care (SOPC) all in one day. Then there are more appointments throughout the month. It’s going to be a pretty full month.

For now, we’re just getting through what’s directly in front of us.

12/09/2026

Last year, my sister Sara won a gift certificate and graciously gave it to me. Thank you so much 🥹💛. I’ve thought about getting a tattoo in Charlie’s handwriting for a long time. I wish I could say I got this tattoo simply because it was romantic. But that's not the whole truth.
So today, I took something I never want to lose and put it somewhere it can't be taken away from me.
His words.
His handwriting.
His love.
And now I get to carry those words for the rest of my life. 💛 Vintage Arts Tattoo Studio totally nailed it. Thank you, Sunny!

10/09/2026

22 years ago, I thought I was just meeting a girl.
I didn't know I was meeting the person who would become my entire world.
And after everything we've been through, I understand something now that I couldn't have understood at 20-something years old...
Having you isn't something I'm entitled to. It's a gift. And I am unbelievably grateful for you. If I could go back to that first day, knowing everything I know now...knowing the beautiful years, the hard years, the tears, the laughter, the fear, the cancer, all of it, I wouldn't change a damn thing if it meant changing the path that led me to you. I'd walk into that moment all over again. I'd choose you. again. And again. And again. You are the greatest thing that ever happened to me.And if I get the rest of my life with you, I'll consider myself one of the luckiest men who ever lived. Happy 22 years. ❤️And if someday I don't get to say it anymore, I need you to know that every single day I was given with you was more than I ever deserved

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09/09/2026

I don't know what I did to deserve this sort of kindness.
Maybe I didn't do anything.
Maybe sometimes people are just good.
Really good.
I'm just incredibly grateful.
For all of you and for the beautiful reminder that sometimes even strangers can become part of your family story in ways you never saw coming. 💛 I wish I could tag all 3,000+ of you
Jocelyn Marie Sara Singley Nancy Amato Ellie Burch Catherine Brondo Lee Ann Rose Kristin ODonnell Wendy Melin Frazier Dorothy Lilly Erin Catherine Melissa Snerr

07/09/2026

Happy Labor Day!