top of page

May 5, 2019

Julia had a happy day today! She was tired, but it didn't seem to get her down. Vitals are acceptable, and really no barfs. The procedure she had to push the feeding tube down further into her system definitely worked wonders.

She WAS starting to make progress with her sleep schedule, but this last round of chemo messed it up, kind of as expected. Now, right around midnight, she decides it's super-happy-baby-time!

She's been getting very excited at seemingly random times over cartoons on TV. I mean - cartoons is pretty much ALL she does for entertainment now (much more than your average 2 year old since she'd stuck in bed). But sometimes when a new cartoon comes up, her heart rate gets high, she smiles, kicks, and points. But we're not noticing any obvious pattern of shows... so I'm wondering if she's at the point where specific episodes of specific shows are what's getting her excited. Who knows! Tonight she got really excited over a Peppa episode <3

And as you can see in tonight's picture... she managed to pull the feeding tube out of the latch and gave her bed a meal. Even better - she was nice and snug under covers, so that was a surprise for the nurses! And Reed has found her fiddling with the suction tube that they use to clear the mucus out of her nose and mouth. Other than a few stuffed animals, it's really all she can reach and interact with on demand. He's caught her spinning it like a lasso, and TRYING TO STICK IT UP HER OWN NOSE!! She doesn't know to take the cap off, so it's too big to fit, but that's exactly what she's doing!

She has a long way to go, and still one know what her future looks like... but I VERY clearly remember the conversations Reed and I had in January. Before we started the alternative therapies, and before the chemo... we talked about whether or not we should even try. Several of her doctors convinced us that even if she miraculously beat all odds and the cancer stopped or reversed, she would have ZERO quality of life. They said with the devastation it "no doubt" already caused to her brain stem, she would likely be unable to talk, unable to move, unable to see.... unable to interact. Forever.

What sort of life is that? So of course we had really difficult talks... what if we did treat her and stopped the cancer's growth, but she was forever trapped in that weird unconscious state she was in for weeks? What if she regained enough to be medically stable, but was unable to do anything and was in constant pain? Would that have been the right thing to do? At what point was the RIGHT decision to do nothing? I was obsessed with what-ifs. Reed was steadfast in pursuing any and all options right up until the end.

So she's not out of the woods yet by a long shot, and her current quality of life is certainly not what it should be... but look at this HAPPY BABY in the video tonight! She is smiling, and laughing, and hugging her tiger. Chemo sucks, being stuck in bed sucks, having a trach sucks, PT sucks... but she's neurologically fine (somehow), and they believe with time and effort, she will regain all or most of her physical ability.

Also included some pictures that were shared on my wall yesterday: amazing people walking and playing in Julia's honor <3 <3 This just makes me so happy to see! Please keep sharing! I'm holding onto all these pictures to make something to show her someday <3 <3


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

237 views0 comments

Recent Posts

See All


bottom of page