Julia FINALLY got a good nap today... like, a really good nap. She slept for about 3 hours total last night (honestly an improvement over recent days), and then took a 2 hour nap this morning. But in the afternoon, a combination of being really tired, some Tylenol, and going back on the vent, was enough to knock her out. She insisted she wasn't sleepy, but then fell asleep with her face in Reed's hands. She slept for four solid hours - super deep, super restful. And she woke up WAY happier. Medically, vitals were surprisingly good, but it might be due to a more reasonable amount of sleep. The most obvious change is her eye (you can see it in the video). She started keeping it closed. We've been here before, last December/January, but it didn't happen quite so quickly. She slowly closed her right eye "for good" over the course of a week or so, where this happened overnight. She can still open it, and did several times to look around, but she seems to prefer it closed. It could be due to tumor progression making it difficult to lift the eyelid, or due to the eye not really working, so it's easier if she doesn't try to look through it. (To note: she is opening it quite a bit more after her restful nap. Not perfect by any means, but not quite so pronounced as in the video.) We had our meeting with the team today, and we have agreed on the next few steps. They are open to our alternative treatment plan. "Complementary treatment plan" is probably a more accurate term. They will not be introducing everything all at once, because they need time to research possible interactions, with her specific chemo, and her specific cancer; but they seem to be on board with giving it a shot. She is terminal, and we've exhausted all recommended treatments, so that opens up some options that aren't quite FDA-approved for cancer (but show safety and promise). Since Julia has tolerated the first oral chemo well, the plan is to do all her labs again on Saturday, and if nothing is crazy, start her second oral chemo. This will get her to a combination that has worked for her cancer in one single case study. Then by Wednesday of next week, they should have an answer on whether they can start her on the first of our list of off-label medications. We don't have a full picture of her complementary treatment yet, nor do we know if there is any chance of it working with the late stage of her cancer and its aggressive nature. But, we're certainly going to try. The team agreed that with this particular approach we're going to need time to study her specific cancer and custom tailor options to fit. That takes time, which is not really on our side, but we were assured there are people looking into it with urgency. I said I would provide additional research and some starting suggestions, depending on what cancer specifics we're dealing with, so that's what I'm working on tonight. ~~~~ Unrelated: Gabriel's rash cleared up by this morning and he's a brand new kid - bouncing off the walls like he normally is. I called his doctor, explained that unneeded exposure to doctor office germs is not ideal with Julia's chemo, and she agreed it was very likely just a viral cold running its course, given its onset compared to cold symptoms and that it went away quickly. So that's good. And I want to thank everyone for sending Wawa gas cards! Wawa is everywhere around here, so I forget that everyone else doesn't just have one (or 50) of these. But I got several gas cards, and this will definitely get me through the rest of the year. Thank you so much <3 <3 ~~~~ Video tonight: A very happy (snot-faced) Julia. She had just gotten her morning bath and was excited mommy showed up. And actually, while on the subject of videos, I'd like to acknowledge that this story has recently taken a shift. This is really only for her Facebook followers - I know many follow through her website and GoFundMe. Julia's updates have been progress and milestones for so long, but unless she has (another) miraculous response to the chemo, or we hit a winning combination with our alternative approach, we are going to be watching Julia decline. This is probably not for everyone, and it's certainly not useful for me to read obvious (and depressing) observations in the comments. I know that her stroke-damaged side is looking weaker, that her face is drooping, that her eyes don't work well, that she looks tired, that she smiles less, that she's more stiff. ...She's very sick. I know. While we're all pretty sure we know where this is headed... Julia isn't. She has no idea what's going on. So as I continue to share her videos, I do so so we can celebrate her being happy and goofy and adorable, despite her circumstances, not so someone can (pointlessly) tell me how awful she looks. Imagine me reading your comment out loud to her. If it's not something you think a terminally ill toddler should hear about herself, strongly consider not writing it. Video of smiling baby in comments, despite her eye bothering her <3 YouTube: https://youtu.be/Z5BwegsIHwQ . . .
********** ~~ 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://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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