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May 19, 2019

Julia had a very grumpy day. She's clearly exhausted, and she threw up several times, which is always miserable for her =( She really fought a nap all day, and fussed so hard for so long that Reed put her in her first time out =( She got re-positioned facing away from him and the TV, and he took her iPad away. Disciplining your toddler always feels awful... imagine when they're in Julia's condition =( Just hearing about it ruined my day. I'm even sad typing it... but she's over it by now. But she really needed a nap, and it just wasn't going to happen if she had any say.

I don't believe the time out worked, but at least it calmed her down a bit. She eventually fell asleep holding Reed's hand (pic tonight), but the second he tried to move it, she woke up and that was that. It was like a 5 minute nap. So she was awake all day and miserable. I planned to bring Gabriel down, but I'm holding off for tomorrow just because she needed to not be bothered.

She did learn/recover a new ability though - Reed woke up this morning to her sleeping with the blanket pulled up over her head. So, I guess she has the grip/arm strength to move the blanket around. That's really great =) So she's tried to put the blanket over her head several times throughout the day... I guess the plus side is she definitely can't suffocate with the trach... And of course she grabs everything she can reach and hands it to whomever is standing next to her. Helper bug.

So while the total exhaustion of chemo should be ending, her blood counts will start to decline so one misery will replace the other. She should be a bit more awake this week, but likely no less fussy. Hopefully at least we can make some progress with therapies. I believe she's scheduled to have at least one each day for all 5 days.

At home, I'm starting to look into the few home modifications we'll need to make to care for her / get her in and out of the house, so that's underway. It's very overwhelming, but it has to get done.

And I'm also taking the advice of many cancer-mom-bloggers (I guess that's inadvertently what I am) who have already walked this walk, and will start a "sharing Sunday". I get a LOT of requests to share GoFundMe's. They're all sad stories and great causes. I just simply don't have time. I don't even have time to read all the messages, let alone individually post about them =( So it's been recommended that on Sunday's posts I remind people that they are welcome to share their own causes in my comments - they don't need to be cancer-related. If you have a need, please share it, with links. Or, if you have the capacity to help someone else, be it financial, support, advice, or prayer, please read through some of the requests. I want to keep the focus of this page mostly on Julia, so we'll try just doing this on Sunday's for now and see how it works. Hopefully this is a reasonable compromise - I appreciate the platform Julia has acquired, so I'm trying to find a nice balance between what I need to focus on, and what additional good can come from this.

Other picture is from exactly a year ago - when I came across it I realized it was the one my dad had as the wallpaper on his phone from when I sent it until he passed. He said he liked how curious she looked... he loved learning <3 And no video again today... since she just grumped. Hopefully I'll get a nice one tomorrow. But since people seem to like them, I picked a short one from last May of her enjoying her newly-mobile baby brother <3

(And seriously - please share your causes in the comments if you have any!) [This makes more sense for Facebook of course]






********** Official Links ***********

(These are here because of scammers)


Julia's *only* pages:


Facebook: Julia's Fight Against Rare Cancer - Fund


Julia's *only* fundraisers:


Children's Book:


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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