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April 21, 2019 (Easter)

Julia had a good day. Vitals are great; only one small barf. It looks like round 5 of chemo starts tomorrow. No plans other than more of the same. She seems to be tolerating it well, and it's the best option they have. Surgery and radiation aren't options due to the location on her brain stem... and leaving it alone isn't an option. So most likely several more rounds of this and then another MRI. She's just starting to be so happy and lively... but I guess that's how it goes. I just want her to be better =( ‍‍‍‍‍‍ ‍‍

This is the second day in a row of doing two new "sprints", where they test her breathing at a lower setting for a short period of time. This time they've been testing her without the pressure support, (the final thing the vent is doing for her is providing a little bit of extra pressure every time it detects her breathing, just to assist and make the process easier / take less effort). So they're trying her out 2x a day with no pressure support, and so far she's doing great. These are all just steps to eventually get her off the vent completely, and then finally remove the trach (but we're talking MONTHS away at the earliest). ‍‍‍‍‍‍ ‍‍

Julia has spent most of her Easter sleepin! They're making good progress getting her schedule back to normal, so she did sleep a pretty decent chunk throughout the night (and so did Reed). But she's taken a few short naps throughout the day. ‍‍‍‍‍‍ ‍‍

I took a video today of her playing with her Peppa Doodle thing (in comments). This was her FAVORITE GAME to play right before we took her to the hospital! She loved coloring on letters, numbers, and shapes. This is the first time we've played since then and she did so good <3 She wanted to play it over and over and OVER. ‍‍‍‍‍‍ ‍‍

...And right now as I type this, I hear the sound of her frantically scribbling back and forth... seriously the best sound ever. ‍‍‍‍‍‍ ‍‍

(I was just re-reading everything and the nurses walked in to check on her training, and all of a sudden it got quiet! This little girl... stopped dead with the coloring, dropped her pen, and shut her eyes! She was pretending to sleep - no shame at all! And then she kept peeking out of her eye to see if they were still there <3 <3 ) ‍‍‍‍‍‍ ‍

YouTube: ‍‍‍‍‍‍ ‍‍

‍‍‍ . . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers: T-shirts: Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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