March 14, 2019
Julia had a very sleepy day today. She's thrown up several times again (no blood), so they added Benadryl to her recent medicines -- apparently it works really well in conjunction with an anti-nausea med. So she has that going on in addition to the chemo exhaustion. Vitals are fine: heart rate 140s, ET high 30s, BP 114/80.
They did another abdominal ultrasound to check for the source of vomiting. We're not exactly sure why they're so interested in looking, as vomiting is a very common side effect of chemo. We'll ask tomorrow, but I assume it's because she started throwing up before the most recent round of chemo. So it's possible THAT vomiting was from the blood in her stomach, and now THIS vomiting is from chemo... but there's just no way to know that for sure, so they're checking and re-checking everything to be safe.
The ultrasound looked fine, except for some inflammation in her bladder. And apparently she has microscopic blood in her urine (which is common with this chemo), so in order to protect her kidneys, they have her on IV fluids and they've switched her chemo to an IV rather than one more concentrated dose. They're checking those labs every few hours to see how it's going. Other than that, oncology left us a note while we were out of the room saying chemo is going great.
Ophthalmology dilated her eyes today and did an exam. They put a nice long report in her chart that the nurse read over... it was a very long-winded way of saying "we don't know". They can't "confirm she CAN'T see" just by doing the test. Apparently it's pretty difficult when the patient can't communicate or move their eye to follow something. Makes sense. So they put in there that if it's useful for medical treatment, they could conduct a more intensive test that actually checks brain activity to see if certain areas light up when expected, suggesting one can see. I don't believe that's needed right now, so we just don't know. Which I guess if fine. (We might try to cover her good eye tomorrow and do stuff that has been making her giggle... see what happens.)
So short update tonight. She's been VERY tired, and she (finally) seems to be getting some decent sleep. Tomorrow is her last day of chemo, and then some immune-boosting shots to help her counts recover. In home news, I've been thinking about ways to make our home wheelchair accessible. We're starting to work with a case worker to discuss what we'll need at home (first of all, how amazing is that!?) So, like what equipment and everything Julia will need, where she'll sleep, what she might be able to do, etc. Apparently we will have a 24-hour nurse for the first 2 weeks, and then a nurse for 16 hours a day... for a long time (possibly as long as she has the trach?) Julia can never be alone with the trach, so it's not like Reed and I can just go to bed.
But our house is an interesting layout, and it's not super large, so we're just thinking about what arrangements make sense. And it sits up quite a bit from the driveway: the driveway stops at basement/garage level, and you have to walk up roughly one story worth of outside stairs, on any side of the house, to enter. So we're mostly brainstorming some wheelchair/stroller accessibility options, since I assume we won't be able to just pick her up and carry her like we used to... trach and vent and all. There's not a huge rush - we're still talking months out, but just something to spend brain power on that's not super depressing. Just a problem to solve! ... I wish my dad were here. He would design something super awesome. ... and I just made it depressing! That's my brain for you.
Seriously though. For Halloween I put a skeleton in my front seat for laughs, and in passing I mentioned how cool it would be if he could turn his head like at the drive-through or something. My dad took him out of my car and literally that night sent me a video of the skeleton all robotized. He even put red LEDs in his eye sockets for fun. He named him Euegene. My dad was super awesome. Julia gets her awesomeness from him <3 He'd totally have made her the most awesome wheelchair ramp ever.
OK. More Julia updates tomorrow!
... I think I'm going to add dad and Eugene to my pictures because I'm missing him tonight. And maybe a video of his handiwork in the comments.
YouTube link: https://youtu.be/VCmz1DmKoRw
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If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3