Not the best night, but she's had a much better day. She didn't need any pain meds until late afternoon, her vitals have all been pretty good (heart rate 150s while awake), and she's only needed a touch of breathing support. She started to look a bit uncomfy in the afternoon, so some Tylenol + Morphine allowed her to take a nice long nap, and she's been in a pretty good mood since! Her one oral chemo is on hold for 6 days, per the treatment protocol, so for the next week she'll only be receiving 1 chemo + Mebendazole. She threw up right after administration tonight, so they redid it and she's doing just fine this time. The followup ultrasound for her lung fluid pocket shows no progression, at least not detectable in the last few days, so they're still discussing what to do about it. She has not had a fever today, and labs were held because her fever never appeared again, so I think they just want to make sure she's steady in that area before considering another procedure. She seems comfortable when still, but definitely does not like being moved, so we're hoping to find the sources of that discomfort soon. There seems to be some disagreement on whether or not pleural effusions are painful. The medical staff seems to say no... people here on Facebook say yes... I mean, I kind of have to believe the consensus of experience, right? Her PET/CT scan combo is scheduled for tomorrow morning. They want to sedate her as little as possible, so they're doing both scans since if the PET shows anything, they'd want a followup CT anyway. So, we should have results tomorrow, and if this cancer has spread elsewhere, hopefully we can get a better idea for ongoing pain management. This is not an MRI, so I don't believe we'll have much more info, if any, about the tumor on her brain stem. . Since waking up from her nap, she's actually given out a few smiles and laughs! I haven't seen any of those in a couple days. She thought it was funny when I was grabbing her hand when she just wanted me to hold it. I took a video (in comments), but she got over that game way quick. Then later she pointed to her nose for a wipe, and the nurse 'surprise wiped' it from the other side of the bed. For some reason she found that really funny and laughed quite a bit... toddlers are weird. She also FaceTimed brother today and enjoyed that. He kept asking for "Jew-yo", and "Hi Jew-yo" and "Talk Jew-yo". I even held the phone next to her for a bit and they watched her cartoons together (Baby Bum = Zombie Gabriel). ~~~~ So all in all, definitely not a bad day. Video in comments whenever hospital internet uploads.
YouTube: https://youtu.be/emPU3wKb6Zc . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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