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December 5, 2019

A surprisingly good day. Last night they started a supplemental fluid regimen since she seems to be a bit dehydrated, and she responded really well. Stats have been super great for her (heart rate 130s, BP 90s/50s, respiratory rate 20s/30s while awake / teens while sleeping). To quote her doctor, "Her body is very happy with extra volume in her blood vessels", so they're tweaking her feeds and fluids. The concern is if her vessels are weeping / leaking, this mystery pocket of fluid could accumulate faster. So, it's all a watch and see thing. But she was super comfy last night. Lots of points and O faces at her iPad. She even got repositioned in bed without completely hating it. What to do about this small pleural effusion is still being discussed. They can drain it again, but that opens her up to more infection, and having the drain in is definitely not comfortable. The pocket seems to be pretty small, and so far unchanged. We did bring up how 90% of people here on Facebook (I can only imagine how much doctors love hearing that) say this is a painful condition, despite what her medical team seems to think. So our concerns have been heard, and we agree with seeing how she responds to more fluids over the next few days. . She got wheeled down for her PET/CT scan this afternoon. It was a long walk to the other side of the hospital, and she got excited about seeing all the Christmas decorations =) She pointed at all the snowflakes on the walls <3 <3 They got her onto the table with little fuss (way different than how she handled being moved two days ago), and then gave her a nice big dose of sleepy meds... and nothing happened. So they gave her more gas, and waited... then more sedation, and waited... then more gas, and waited... This little girl is OVER her forced naps. They called her a heavyweight (or as Reed likes to say, Chunk Monster). She just kept darting her one eye between daddy and the staff, totally disregarding all attempts at knocking her out. They eventually had to go get more stuff =) She even did a pretty good job fighting the nurses off with her right leg, it was all up in everyone's business. But eventually the meds won, and she took a nap. The scan was about an hour and went fine. Since then she's really slept comfortably on and off the rest of the day. The most comfy she's been in almost a week, I think. It's too early to assume this is purely extra fluids (rather than just a good day)... but we're hoping her comfort is this manageable. She hasn't even needed Morphine today. Just one dose of Tylenol. We expect to get PET/CT results within the next few days. If they find something catastrophic, of course they'd tell us immediately. But tomorrow is Friday, and they don't always get around to full results in 24 hours, so it could be as late as Monday. I don't know what I expect to see on the scan, but nothing will change what we're doing. Obviously we hope they don't find cancer elsewhere, but I mean, she's already been given a pretty poor prognosis and it's not like NOT finding cancer elsewhere suddenly makes her outlook better. So really it's just for pain relief options. ~~~~ Pictures tonight are from a HAPPY-iPad-gettin' Julia, and little man surprised me with a visit this morning!! He has been with Charlene full time since we got Julia's bad news and I miss having him home SO MUCH. It was so nice to see him at home <3 <3 Video in comments: Julia giving some big smiles for iPad, and bonus clip of Gabriel being a toddler.

********** ~~ 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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