February 12, 2020
No emergencies. Vitals are OK: heart rate 160s, ET low 40s, BP currently 88/53. Heart rate is sitting a bit higher in general. Tylenol didn't help, so they're trying Albumin and if that doesn't help, they'll try Ativan. But no grimacing like she was the other day - she looks rather comfortable.
She has not produced any urine in quite some time, so they removed her Foley catheter just to get rid of that infection risk. They will continue to monitor her bladder to see if anything needs to be removed, but so far the abdominal drain seems to be taking care of it. However, the it was draining less than usual today, so they ran blood work to make sure electrolytes are still being balanced, and results determine they are. So... not quite sure what's going on in there, but hesitantly saying so far so good. She's made a few dirty diapers today as well, which they were happy to see since it's been a few days.
Her nurse gave Julia's teeth several good brushings (she hated it), but her mouth has to feel SO much better. So much crud came out of there. And with continuing to slather on the lip balm, her lips are looking better too.
Her skin continues to look very thin. And that could be due to many things, advanced illness + steroid usage being the most likely. Poor(er) nutrition being possible as well. But the skin on her stomach is looking a bit see-through (she's very veiny, but she wasn't this veiny during her major swell episode, so I don't think it's purely the swelling). When they pull the sticker leads off, they leave a red mark behind for much longer. Even the tape they're using around one of her drains can now pull up the skin a touch, and she gets little injuries. Bruises from blood draws are lasting longer on her arms. Things like that. No one on the team is concerned; they don't think anything is breaking down to the point that infection is a risk, and they don't think any of it is uncomfortable. Just getting a little thinner.
As far as I knew, round 2 of chemo was scheduled to start tomorrow. But the doctor said oncology wants to have a meeting "to discuss things" first. I don't believe there has been any imaging done that would give them an idea as to what the cancer is doing, and at only four weeks in, it should be too premature to say it's not working. So, I'm not quite sure what there is to discuss. They also aren't doing the typical 'day before' labs tonight, which is unusual. I guess we'll know more tomorrow.
We made a new fancy room sign for Julia's PICU room. It's on the door now and looks great =) And her nurse today said "I went on TikTok last night and guess who I saw!" <3 <3
In other news... I just received an automated phone call saying records indicate I purchased a certain smoothie blend from Wegman's that has just been recalled for Listeria concerns. I looked it up and it's accurate. So that's kind of cool that they're able to call and alert me to that sort of thing. Less cool that my sister and I drank that smoothie four days ago... I'm sure that won't affect my medical paranoia one bit.
I have a short video, but upload is super slow tonight... I'll see if I can get it to go.
*********** ~~ 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
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. A current summary can be found here: juliaadamscancerfund.org/summary