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December 14, 2018

Updated: Dec 22, 2018

Not much to report. She's stable, but still fighting a random fever. They're starting to lower her sedation. She's not super aware, but moving her hands more. No pretty eyes yet, and far from any smiles. But hopefully progress in a few days.


I've contacted a foundation for her cancer and I have the word out for some second opinions. I expect her to stay at CHOP for her treatment, but it would be nice to get input from some other doctors. Dana Farber in Boston, one in New York City, and John Hopkins are all listed as hospitals with experience treating this particular rare cancer. The person I'm speaking with at the foundation says she would be very shocked if our oncologist isn't already working with those doctors just due to the rarity of it, but I'm asking anyway. So hopefully I can get some feedback on that soon and be even more confident in our treatment direction.


I want to hug her, I want to see her eyes open, I want to see her smile, and I want to hear her say mama. It's amazing how your priorities change when something like this happens... all of those things sound so simple. Really hoping to cross some of those off this week!




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