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January 26, 2020

Another emergency-free day. Vitals are stable, with BP 80s/40s all day. Still no fevers, so we're a week+ fever-free. She yawned really big today... which I guess is notable. She yawned yesterday a well and I thought it looked odd, because I realized I haven't seen her yawn in quite some time. Many weeks. So now it's a yawn two days in a row. And perhaps we just didn't see her yawning, and she's been doing it the whole time. We can't really say. The nurse said she thinks the redness is looking a bit better than it did the last time she had her a few days ago. It's slightly larger in area, but less red. And the oncologist stopped by and said her belly feels softer. He's been keeping an eye on it while he's been on all week. So... I guess at least no decline medically today. And Reed put on Peppa and she definitely found it. He got a picture of wide-(single)-eyed Julia watching her soaps. (That's all for the Julia update.) ~~~~ Today was a rough day, and I knew it would be from the moment I woke up. I felt like I had been hit by a bus. I'm not sick, just physically sore and exhausted. I've been in a funk all day. My sister was supposed to come over and help clean out my car, which still has stuff from my office... which I closed in summer 2018 when my dad got sick. But I cancelled. And then I was supposed to see Gabriel, and all day I knew he was waiting for me to come over, but I just couldn't. Which of course made me feel like garbage. Charlene sending me a picture of him waiting by the door didn't help. But the thought of putting on clothes and going somewhere just all of a sudden seemed like the most difficult thing to do.

So since it was too overwhelming to leave, I tried to be productive. There is so much in my house that needs to be cleaned and organized. It's like time stopped here 15 months ago. So I decided to go through the cabinet in my laundry room. I found a "101 Best Chocolate Chip Cookies" recipe book that I forgot I had. I had moved in with my dad shortly after high school, and in an effort to bond with me, he bought this book and turned Tuesday nights into 'Cookie Night'. We'd try a new recipe together, just the two of us, and write notes on what we thought. I have no idea why that fizzled out. But I found the book still packed in a box, and now it seems like if I had the chance to bake one more batch of cookies with my dad, everything would be better (which is ridiculous). So that bummed me out. And then I pulled out all the odds and ends tools and hardware he bought for this house and wanted to organize it. I can identify a screw and a nail with 90% accuracy, but that's the extent of my handyman knowledge. I got annoyed that I couldn't call and ask him what all this crap is, why he got it, and what I'm supposed to do with it. So I mostly just acknowledged these are things in my house, packed them in a box, and put them in the basement. (Since I know we have lots of new followers (hi): I lost my dad to cancer literally the day before Julia was diagnosed. Those updates are Nov 8th / 9th 2018.) So, doing things to keep my mind off my bummed-out day was a failure. I've called Reed several times to check in on Julia, and he's going through the same thing. Every time I call he's not doing anything. He's just sitting there looking at her. And Reed generally has no problem compartmentalizing what's going on, and focusing on something else (like, his ability to "turn things off" and "not worry when it won't fix anything" can be downright frustrating). But not today. And since I'm an extrovert, I feel everything he's feeling... on top of everything I'm feeling. It's just... we've said our 'final goodbye's' to Julia several times these last few months, not to mention the previous year of emergencies. When her shunt recently malfunctioned (and we didn't know what it was), the other week during her septic shock episode, even more recently with her alarming blood pressure drop... We've prepared ourselves for it, and held her hand, and watched her vitals, and told her it's OK to let go. I've filmed Gabriel's sweet 'last words' to his sister. I've watched Kinley and Joshua cry over FaceTime for their cousin. I've left the hospital, exhausted, terrified I'd never see her alive again. ...And then she hangs on. Over and over. I'm just so drained. And I think the last day or so with no emergencies has turned off my max-anxiety-preparing-for-the-worst-survival-mode stamina, and now I can hardly move my body. And when I do, it hurts. I know I've been fighting off depression (who wouldn't be). It's not here yet, but I get glimpses of it, like today. I'm hoping right now this is just the come-down from the last several weeks of extreme stress, and hopefully things will be better tomorrow after some sleep. On the plus side, now I have clean socks and I finally tossed the leftover chicken from Christmas Eve. ~~~~ Picture is of a beautiful new quilt the ladies from a local church made for Julia, and a new prayer piggy sent from one of our friends <3 Also a wide-eyed Julia watching Peppa, and Gabriel in his handsome church clothes. No video tonight. . . .

*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: Car Magnet:

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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Jan 27, 2020

Amy honey, it makes me tearful to read your last blog. I have followed you for a very long time and I could NEVER question why you were having a bad, bad day. The average person would have mostly those type of days. I am 66 years old and a retired nurse and have not til now met people like yourself and Reed. I believe that sometimes when we are in crisis (as you have been for well over a year), you just DO IT, but it can’t go on forever. I can’t imagine how you could have ever grieved over your dad and it has to happen —-either back then or months from then. Not trying to teach yo…

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