January 29, 2020
No fever since last night. They immediately put her on three broad spectrum antibiotics just because she's so fragile. So far nothing is growing anything, like usual. Last night when she spiked the fever, her heart rate also went up (160s) and her BP dropped a bit. Not scary low, but 65/30s. They didn't do Epinephrine, but they did do fluid, Albumin, and steroids, and she responded quickly. All day and right vitals look solid. Heart rate 130s, BP 90/54, ET 41. I noticed both her lips and teeth looked darker today, with yellow more obvious on the teeth. A little later she had some very dark green spit-up. I've noticed the same dark color has been venting from her g-tube the last week or so (usually the vented color is orange like her formula). I asked about it in the g-tube when I saw it, and they said they aren't really sure why it changed colors, but it can just happen sometimes. But her having it as spit-up/reflux is new as of today-ish. The red on her stomach continues to spread, and with the new symptom of reflux with this super-dark fluid, they ordered another ultrasound and x-ray of her abdomen. The main concern is a blockage. I asked how concerned the team is, in general, with the red rash. The NP said they're mostly just confused. They really have no clue what it is, since it's not textbook anything: infection, breakdown, reaction, etc. No antibiotic, anti-fungal, cream, supplement, or dressing seems to have any effect. It's not textured, not raised, not warm, etc. It's just... spreading. I don't personally see how a blockage could be the cause of the rash (since it's been slowly grown for what, a month? And she's been pooping just fine, with dozens of images that would have detected a blockage). So I think they're more concerned with the reflux part. Just with those combined together, they're very interested as to what's going on in there. Of course they continue to swab and test everything. And I have brought up several times this yeast that is supposedly hard to detect, so the team is aware of my concerns (I'm also sure they're aware of the existence of this yeast in general). She seemed to be moving her mouth quite a bit today. Nothing crazy, but more than we've seen in a few weeks. It's possible she's had the reflux for a while, but is only recently able to push it out with her tongue (who knows... just speculation). The neuro-oncology team stopped by to do their daily check. They were interested to hear that she's been moving her mouth. We agree that there has been absolutely no movement in limbs, or really face, in quite some time, and nothing done in a reactionary manner. When we turn Peppa on, she opens her eye to watch it (so she can hear and understand), but so far seemingly no control to respond to a request. I know everyone wants to get super excited about the "progress" with the yawning, grimacing, and today, more mouth movement. And I spoke with oncology about that. I did ask if it's too soon for chemo to be having an effect (assuming they would say yes). But they actually said while early, it would not be impossible to see improvement if the chemo is working. But again, this chemo is not expected to work, at all, on her cancer. The other unknown is her massive brain hemorrhage. That also happened, along with explosive cancer growth, right around the time she declined in December. So it's definitely possible her body is just started to re-absorb some of that blood, allowing her to regain some facial movement. In which case, we'd see this 'improvement' but the cancer wouldn't actually be affected at all. And right about now is about the time a healthy body would start to re-absorb. So... too early to get excited over anything, especially with this growing abdominal redness concern. ~~~~ Reed tries his best to stop into his office once a week or so, just to keep in the loop. As a man of routine, he always stops at the same Wawa when he leaves. Well, he's been recognized! Last week someone asked if he was Julia's dad, and today they refused to let him pay for his food and they paid for it themselves <3 (He has no idea he's so recognizable... I tell him what goes on here on Facebook, but he really has no clue. <3) I think it's sweet <3 <3 ~~~~ In the ongoing effort to get Julia to respond to something, I tried getting her to close her eye today. I've been trying to get her to mouth 'dada' for quite some time without success. Today I tried asking her to blink, and showing her what I meant, and... I can't tell if she did it. I think maybe she did? I'm so hesitant to see any progress that I might be overly skeptical. So, that video is in the comments.
Picture tonight: Since there is a new "Warrior Julia" drawing out there to be colored (studiomooch.com/Warrior-Drawing-2020.jpg) I wanted to capture all the sweet notes from kids that we got last year with the 2019 drawing <3 If you'd like to see the full size image so you can read them, you can use this link (http://studiomooch.com/Warrior-Notes.jpg). There are some super special ones... sweet and kind of (likely unintentionally) hilarious.
YouTube: https://youtu.be/5QkFF2XqX5o . . .
*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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