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April 23, 2019

Not a fantastic day for Julia. Day 2 of chemo is really wiping her out. She's slept pretty much all day, and she's super grumpy when she's awake. Her face is nice and swollen from the treatment as well, so she's got extra puffy cheeks and eyes. Lots of mucus too - so much she's gagging on it constantly. She's just miserable =( ‍‍‍‍‍‍ ‍‍

But vitals are holding well - heart rate and breathing rate are both a bit elevated, but that seems to be typical during chemo. (They're keeping eye on on her temp just in case.) She didn't have any of her therapies today because she's been sleeping. So no PT or speech or anything. They've continued her breathing sprints and she does well, even when exhausted. The respiratory therapist commented that every time he sees her, her settings are lower! So he says she's doing fantastic with the breathing recovery. ‍‍‍‍‍‍ ‍‍

She's barely had any play time today. Just a short FaceTime session with Aunt Charlene and Gabriel, which she really enjoyed, and she messed around with her iPad a bit. Really she just finds it super cool that she can change the channel on her own. So we get to hear about 8 seconds of a million different TV shows =) But mostly she's getting frustrated with anything you try to give her right now - she's thrown her Peppa Pig away several times! ‍‍‍‍‍‍ ‍‍

So she just got a bath (and I CLEARLY heard "No!", but couldn't get her to say it again), and she's now wearing beautiful new blue bracelets from her friend Sabella <3 <3 So, clean, SLEEPY Julia is in a picture tonight, as well as a pic from earlier showing the goofy way she decided to take a nap! ... we straighten her legs and she flings them right back out to the sides. ‍‍‍‍‍‍ ‍‍

And I want to mention - I am getting contacted every day by people wanting alternative treatment options to help fight their own cancer, or their parent's, or their sibling's, or their kid's. And of course I share everything we're doing as detailed as I can. So thank you for staying involved - even if "all you do" is keep her story in your mind, because clearly you're sharing with people who could use the hope. I've spoken with two new families whose children were put on hospice just this week - they've both added the CBD/RSO and one the PEMF therapy. And I just spoke with a mom from Africa, whose child has clival chordoma (same as Julia) and they were told chemo doesn't work and they're out of options (just like we were told). I added Julia's story, to that of the NZ family who originally contacted us, and hopefully she has enough to go back to her oncologist and give it a chance. This cancer is SO RARE (we're talking the kids who have had it EVER number in the 20s - so just THREE positive cases on chemo is already a 15% success rate, right? That's not 0.) Anyway! Don't get me started on doctors writing off kids before their time. Just - thank you for staying involved. I'm happy to commit my time to any family who needs options, so just keep sharing. ‍‍‍‍‍‍ ‍‍

And the only video I got today is one just a few minutes ago, of Julia napping hard after her awful horrible bath time. <3 <3 <3


Reminder - my personal Facebook page is 100% Julia's nightly update - please feel free to follow there if you'd like to join in on comments! I know this blog page isn't really communication-friendly =) :

. . . ********************************* ********** 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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