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November 20, 2019

More physical decline today, unfortunately. She is just so weak. But neurologically, she seems "fine", so no one is concerned it's another shunt issue (we agree, for what that's worth). She was a bit better this morning, but nothing like even over the weekend. She did participate in both OT and PT, but they both noted her extreme weakness. They tried to sit her up and they only got a few seconds at a time. A month ago she'd sit up until she fell asleep, last week she could still sit unassisted for 15 minute, today it's pretty much not at all. I haven't seen any movement or responsiveness out of her left arm, and it's starting to get cold to the touch. On top of that, her right arm is so weak she can barely use it. She did request to color this morning, which she did with OT, but it was minimal. Now, after being awake all day (since 5am), she can barely even move her fingers. I have her arm propped up on a blanket so her hand is positioned in front of her iPad, and she can barely swipe. She can't wipe her nose anymore... I've seen her try. In fact, they have the pulse-ox on her left hand (which is something that never happens), and she hasn't ripped it off yet. So she either doesn't know it's there, due to lack of sensation, or she lacks the strength and control to get to it. The team of course is aware of the weakness. Vitals are all decent. Her sodium levels have started to drop a bit. These numbers don't really mean anything to me, but they said they like upper 130s / low 140s, and it dipped down to 128. I guess the first concern is, where is it going? They are considering whether or not they want to look into a spinal fluid leak. Secondly, apparently sodium affects a lot neurologically, so a low level can throw things off and make her more prone to seizures. But they are attempting to treat the falling levels, and she's already come up to 131 since yesterday. So they're monitoring closely. Last January, her sodium was doing the same thing... so I'm not surprised. She continues her treatment with no issue. She hasn't thrown up in well over a week. Several people have asked about a speaking valve - since her throwing up constantly was a barrier - but she's only been on her vent lately, so it's not currently an option. She has been too weak to tolerate her HME. . No MRIs are currently scheduled as the results would not change anything (we'd continue to do what we're doing regardless of what they might show). A CT scan, which doesn't tell us much about the cancer, is what would be used for concerns with bleeding, pressure, or stroke. I imagine an MRI would be ordered if she starts to show signs of progress. So I guess that's that. We're still trying, but we knew the cancer had come back with a vengeance several weeks ago, and since then, she's pretty much visibly worsened by the day. Thankfully she still appears completely comfortable. ~~~~ I took a short video (in comments) of her attempting to use her right arm. Major difference. (Will try to post YouTube video later tonight - not working from hospital. Video is on Facebook.) (And so many people have sent messages, and cards, and gifts for other kids' upcoming birthday, and even some Wawa gas cards and checks. Thank you <3 I am running way behind on responding to anyone. Please know everything is very much appreciated.)

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********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3

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