Updated: Dec 1, 2019
I just realized I have two 2 year olds... at least for another two days. I had two 1 year olds last year at this time, but it never registered because everything was so new with my dad and Julia. I thought it was so cool that they were only 11 months apart, and they would grow up being close in age. . We got confirmation today that the fluid of pocket near Julia's lung contains malignant cells. So, cancer. We were asked to have another team meeting on Monday, but I said we don't want that. Like... we know. We were told a month ago that there was nothing more that could be done and she would die to this cancer. I assume that hasn't changed with this new discovery. So, the meeting seems redundant. As long as she's comfortable, we're going to continue treatment, so... "we don't care" sounds much more heartless than intended, but... we don't care. Unless they have something to add to her treatment plan, we don't need another sit down. Medically, she's done fine today. She got bumped off the PICC schedule due to emergencies (we certainly understand that). So she's currently scheduled for 11am tomorrow. At this time, they DON'T believe they are placing another drain for her fluid pocket. I guess right now it isn't a "pocket", just some extra fluid. But it hasn't affected any of her respiratory stats, and she seems to be moving just as well as she was, so they're just keeping an eye on it. They did a small breathing sprint with her today. Not to the HME or anything (she's still on the vent), but they lowered her settings to just pressure support and she did pretty good. They're just looking for a balance between providing comfort and not over-supporting her. She is using her right arm just as much as she has been, and her right leg joined in on the fight against a diaper change a few minutes ago. Her left leg seems a bit more...blah, recently. She can move it, but it's not quite as kicky as previously. She can still get her right foot up near her head when she needs to, so, she's compensating =) I mean, that's super sad, but it still makes me proud. She only has two working limbs, but she's going to use them to let you know she still means business. ~~~~ Pic: I meant to get a daytime pic, because someone commented on her pale color. It's just the light. It gets dark so early here, and the PICU doesn't have the same warm light as the PCU. So she has been looking extra pale. In person she looks the same. I have a video I want to add to comments, but internet is being difficult. Maybe in a few minutes.
YouTube: https://youtu.be/_Zp6DSJMXOk . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP 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