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Charlie's Ewing Sarcoma Journey

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Nazareth, PA
Charlie's Ewing Sarcoma Journey

life and all the in-betweens of being diagnosed with incurable cancer. Sharing the reality of cancer, love & survival 🎗💛

10/31/2026

Don't forget to turn your clocks back tonight before bed ⏰️🕰🕑
Enjoy that extra hour of sleep 😴 💤 (for those of you who can sleep...lol)

10/31/2026

Happy Halloween from Charlie's Ewing Sarcoma Journey! 🎃👻
We hope your day is all treats and no tricks. lots of candy, costumes, and sweet moments with the people you love. 💛

10/30/2026

Today's cardiology appointment was a little disappointing, and honestly, we're feeling frustrated.
Charlie went in with concerns about his breathing and continued heart rate issues. His blood pressure was 100/60, heart rate was 158 (they ordered an ECG right there) when he arrived, and oxygen was 95%. He stated he has been having more trouble with breathing. the only recommendation is to continue his metoprolol and monitor. We left without much direction about why he's been struggling to breathe and his heart rate. And that's where the frustration comes in. It feels like Charlie is seeing more doctors than ever, going to more appointments, having more tests, and yet not getting many answers.
We're also still waiting on the results of his overnight oximetry test.
His next appointment is November 5th for his vascular testing follow-up.
One appointment at a time, one issue at a time. But it's getting harder not to feel like we're running in circles. We just want to connect the dots and figure out what's going on. 💛

10/28/2026

🍂 Cold & Flu Season Is Approaching! 🤕 🤧

A little friendly reminder to please be mindful of those living with chronic illnesses, cancer, weakened immune systems, and other health conditions that make getting sick more dangerous.

If you're feeling under the weather, it's okay to reschedule plans! Wash your hands, cover those coughs, and please be understanding if someone needs a little extra space to protect their health.

It's not about being rude or overcautious; it's about protecting those who may already be fighting battles we can't see.

A little kindness and consideration can go a long way. Let's look out for one another this season! 🍂💛🎗️

10/26/2026

🎗️ Charlie's Vascular Update
Charlie's testing today showed that his already severe radiation induced vascular disease has progressed significantly since last December. The blockages affecting his aorta and the arteries supplying both legs are getting worse.
The blood flow to his feet is so compromised that they couldn't obtain toe pressure measurements because the signals were too weak. Some blood-flow signals in his feet couldn't even be visualized. His pedal acceleration time was also reported as non-predictive of healing.
In simple terms, the circulation to his feet is severely limited, and his ability to heal if wounds develop is a serious concern.
We haven't spoken with the vascular team yet.
For now, we're waiting for that conversation with vascular on November 5th. We'll share more when we know more. Onto Cardiology on Friday
Thank you for continuing to stand beside Charlie and our family through all of this. The love and support you show us mean more than you know. 💛🎗️

10/25/2026

Tomorrow is another day of testing for Charlie.
He has an ABI and vascular waveform analysis at multiple levels scheduled, and this one is especially important.
Charlie has severe peripheral artery disease (PAD), with blockages affecting the major arteries supplying blood to his legs and feet. His abdominal aorta is blocked, along with arteries in his pelvis, severely limiting circulation to his lower extremities. He can barely walk a few steps without struggling. His feet can be cold and painful, and the circulation problems add another layer of difficulty to an already complicated medical situation. Tomorrow's testing will help evaluate how blood is flowing through his legs, where the circulation is most compromised, and how severe the problem is. Those answers matter as his doctors continue figuring out what, if anything, can safely be done to help him. Tomorrow, we're hoping this testing gives his doctors a clearer picture of just how bad his circulation is and what options, if any, are available.

10/22/2026

Tonight Charlie's doing an overnight oximetry test He'll wear a watch type device and a little sensor on his finger that tracks his oxygen levels while he sleeps. It's another step toward answers for the chest pain that sent him to the ER last week, and what's been going on with his breathing and lungs. Nothing big or scary... just quiet monitoring through the night, and hopefully a clearer picture.

10/22/2026

🟡🎗And the winnner is.....🎗🟡
Congratulations, Adriana L! Thank you so much! We will be in touch shortly! 💛💛

Sorry for the delay. We are having trouble with a glitchy video 😩 video is in the comments

10/20/2026

🅢🎃🅜🅔🅣🅘🅜🅔🅢 🅨🅞🅤 🅙🅤🅢🅣 🅗🅐🅥🅔 🅣🅞 🅖🅞 🅦🅘🅣🅗 🅣🅗🅔 🅕🅛🎃🅦

"Honeybear, I'm gonna bring the Christmas tree down and turn it into a ghost"

" the what?"

"The Christmas tree. Do you care?"

"No, go for it 🤦🏽‍♂️"

If it makes her happy, it makes me happy

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