top of page

January 5, 2020

Does your pre-wedding anniversary count after you're married? If so, it's our pre-wedding anniversary today. I guess it makes 13 years. Neither of us could figure out how long we'd been together, so I had to look at the release date of World of Warcraft Burning Crusade, as standing in the GameStop line for my birthday was one of the first things we did. It was a pretty easy first 7 years, then we got married, then life got rough. And it's stayed pretty rough. I wish our biggest problems were still getting people to show up for a raid. . Julia has slept most of the day. Our oncologist says the disease progression on her spine is likely causing the excessive tiredness. The lung issue recently only added to it. She was awake a bit yesterday, but the care team last night didn't really let her sleep. Reed was actually pretty annoyed today. He said there was someone, or several someones, in her room every 15 minutes. The lights were constantly on, they were talking loud. He commented that they acted like (brand new) day-shift nurses. That's very unusual for CHOP... and it takes a lot for Reed to even remark on something, so it must have been over the top. So there's noway she got restful sleep at night. After her bath this morning (which she can still protest with a head shake) she just zonked out, and has been sleeping since. Her vitals are decent. They were suspecting a clog in her right chest tube drain, so after putting something in to loosen it up, it started draining again. It's possible that pulling off that fluid (as well as the fluid coming out the other side) is just dehydrating her a bit. Her heart rate is in the 160s, her BP is lower than normal at 76/48, and ET in the 50s. Her belly looks about the same, as far as swelling and the weird red rash. Still no word from labs on what it might be. I believe she's been using a steroid cream as well as another broad spectrum antibiotic with no noticeable change, but it's only been two days. And she got some blood yesterday since one of her counts were low, and that went fine. So I guess we're just waiting for her to wake up sometime soon and get some Peppa time.

. Picture tonight is of an amazingly beautiful painting done by Jim Kessler <3 It's on my mantel now and it's perfect! It's one of Julia's 6 month pictures. I included the painting, some original pictures, and the card from everyone who helped pay for packing and shipping. I will have this painting on my wall forever <3 Video in comments: sleeping Julia and adorable brother.

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

638 views0 comments

Recent Posts

See All


bottom of page