Clinical Trial Update - A Minor Setback
In support of
Dana Stein
View Support Registry
Dana Stein
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.
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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