Support Registry Update

Clinical Trial Update - A Minor Setback

In support of
Dana Stein
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I want to share the real update - not just the highlight reel.

Last week, Dana was dancing the halls at Duke University, smiling with a catheter coming out of her head, crushing the first four days of her immunotherapy trial like the warrior she is.

Then the next stage of treatment hit.

Twenty-four hours of immense pain. And the following morning… everything changed.

Dana was unresponsive at times. Stuttering. Unable to finish sentences. Confused about where she was. Tremors in her hand. Weakness down her left side. She couldn’t hold onto things. 

In a matter of hours, the sharp, funny, vibrant woman I married looked severely neurologically impaired.

I questioned everything.
Did we make the right call?
Did we push too far?
Is this permanent?

Doctors assured us this can happen - that the inflammation means the immune system is working, that the fog will lift, that strength will return.

But on the flight home, I broke. I sat next to the love of my life as she stared at a blank screen for four straight hours. I cried quietly, feeling helpless.

The next few days were the hardest of my life. You don’t realize how much living requires two hands until one doesn’t work. We even ended up back in the ER (and in the same exact room where it all started!) - more scans, more fear - but thankfully everything came back okay.

Yesterday, I spoke with her neurologist. She reassured me that this is part of the process. That improvement will come over the next month.

Glioblastoma is brutal. This journey is not linear. It’s dancing in hospital hallways one week and relearning simple tasks the next.

But she is still here. Still fighting. And we are holding onto hope - one day at a time.

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Comments

Katie Linville

Praying for you guys. Josh, sending hugs to you. Hang in there, she is so lucky to have you by her side.
  • 15 days ago

April Green

Thank you for this honest and transparent update. I can't imagine how hard this is for you to watch. We continue to lift you up in prayer and be available if there is anything at all that you need.
  • 15 days ago

Michael Mayer

Josh, thank you for sharing this and we know how much honesty and strength it took to write that. Dana is an extraordinary fighter, and it's clear that she has an equally extraordinary partner beside her. The way you are standing with her through every twist of this journey speaks volumes about your love, commitment, dedication, compassion and character. Glioblastoma is brutal. But the courage that you both are showing is more powerful. Hoping and praying that each day brings a little more strength and clarity one day at a time.
  • 15 days ago

Lori Johnson

The battle is real. The caregiving life is hard. The grief is real. Keep crying, keep trusting your faith, let others hold hope for you when it feels to hard. Thanks for sharing the raw and the real. It's awful watching someone you love change so drastically. And the fear can be paralyzing, plus being a parent too. We are praying for Dana to return to herself over the next month and holding hope for you.
  • 15 days ago

Randi Adleberg

Dana's friends in NoVA are with you both. The journey may not be easy, but you are not alone.
  • 14 days ago