January 16, 2020
No excitement today, thankfully. Vitals are decent: heart rate 140s all day / 160s now. BP hanging around 90/50, now it's 82/46. It's a tad low, but nothing concerning enough to do anything about. Other stats are unchanged. She has not had a fever all day. The most recent temp was just slightly warm, so they took the blankets off. I wrote down a ton of notes from everyone's comments yesterday, with specific infection questions to ask her team: has stool been tested, is meningitis a concern, has anyone checked her for simple ear infection, what about fungal infections that are notoriously hard to detect, what about systemic candida, has her head wound (bed sore) been scraped and checked, what about a CT scan to find an infected pocket of fluid... So, awaiting on responses to all of those. I'm sure none of this is new information to CHOP, they have been super on top of things, but at least I can confirm this all has been considered and looked into. She just got an ultrasound done for her bladder and kidneys, just for an update. Last I heard she is producing a perfectly acceptable amount of urine, so I don't think they are concerned. I personally think her belly looks a bit bigger today, but I'm not positive. And since she has been fever free, I believe the new chemo (Temodar) starts tonight. I don't believe this is a very common treatment for chordoma, but given certain factors in her tumor, and what they know of chordoma, this is a third-best guess option. I understand it's sometimes combined with a second medication which she is not a candidate for due to her brain hemorrhage. So... we'll see. They are holding the Mebendazole for a few days just to make sure she doesn't have a reaction to this new medicine, but I believe the plan is to start that back up if everything goes smoothly. I didn't see oncology today to ask if they expect her to lose her hair. I mean... doesn't really matter, but she's super cute right now <3 ~~~~ Tomorrow is my birthday, and my (amazing) nutritionist... who hasn't actually had an real opportunity to nutrition me yet... (and is still eagerly waiting for Julia to get post-chemo so she can fix her up!), asked if I had a favorite massage place because she wanted to get me a birthday massage. I said I didn't. So she said she'd ask around. I guess asking around turned into a bunch of people wanting to contribute... so after I leave CHOP tonight, I'm headed to a hotel in Philly, and then my full salon day starts tomorrow at 10am! Let me tell you. I have knots all over my body from unending tension, my face has been breaking out for a year, my hair sometimes falls out in clumps, and I haven't even looked at my nails since 2018. They're going to take one look at me and kick me out. But, if they don't, I'm going to try my best to not be in my head, and just relax (which is not something I'm good at), and enjoy this super thoughtful birthday spa day so many people contributed towards. And it's the whole deal - massage, facial, mani/pedi, hair, and make-up. Since I'll be all done up, Reed and I have a reservation at a nice steakhouse, thanks to a gift certificate from my boss <3 But, that date night is 100% TBD on Julia. Us both being away, even for just two hours, has been difficult, stress wise, with her current state. So if she is having a good day, we'll keep our reservation and enjoy a nice dinner. If it's anything like a repeat of next Friday, I will just be the most dressed up person at CHOP and we'll get Boston Market delivered =) Thank you so much for everyone who contributed. This was very unexpected, and I'm really excited <3 ~~~~ Picture: I have received a TON of these around-the-world pictures. They are perfect! I have plans for them in Julia's legacy album (which is what I'm calling it right now). This note-held-in-front-of-pretty-background look is specifically what I'm after. If you want to contribute, just put your picture in the comments or message me <3 (My Timeline is the least likely to get seen - my notifications are perma-capped at 99+ so I don't really see tags). And video in comments of Julia-Peppa slumber party that's going on right now <3 I wanted to add another video as well, so I look at what was going on exactly 2 years ago today, and it's one of my favorites.
YouTube: https://youtu.be/Y8z5QC11KFk . . .
*********** ~~ 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