November 24, 2019
A better day for Julia. Obviously, as far as we know, the cancer is still growing, and likely causing all these other issues, but she has clearly gotten relief and is a little more like herself. It is so difficult with such a young child who can't really communicate, with a tumor on her brain stem that is expected to do all kinds of weird (and increasingly bad) things. CHOP has really been doing a fantastic job in a very difficult situation. During the last 1.5 years I have learned way too much about cancer. But I still know pretty much nothing about all the other medical stuff. So I'm mostly just repeating stats and terms for Julia's medical followers... I don't really know what I'm talking about, so don't feel left out if you're confused too. . We have no idea how quickly the fluid pocket filled up, but we know that she has grown increasingly weak and uncomfortable, with recent pain if moved. It's so hard to know what is causing what, and what might be related to what, or what might be a completely new problem that can be addressed. Over the past few weeks, she's had cancer aggressively taking over her brain stem, a shunt malfunction, and a large pocket of fluid compressing her right lung. Like... she was getting weaker. Brain stem cancer does that. Shunt malfunctions do that. And then they found something else: fluid pockets - they do that. The shunt and fluid pocket have been addressed, but she's still weak. Now is it "just the cancer"? Or is there yet another undiscovered issue. Is she also fighting an infection? That's what's so difficult about this. We believe the major change for "this issue" really became apparent just over the past 72 hours (but that's not to say it hasn't been filling up for a while). Yesterday, before the draining, she was clearly struggling more to breathe -- oxygen assistance through her vent had to be bumped up to 35%, and even still, her oxygen saturation was sitting around 90%. Since the fluid was drained, her oxygen is back down to 21% (room air - like you and I breathe), and her oxygen saturation is perfect. Before the drain, her respiratory rate had climbed to a sustained 40-60 breaths per minute. Now it's back down to a comfortable 20-30 / teens while sleeping. Immediate improvement. Hopefully it lasts. The question still is... where did it come from / will it come back? Tons of tests are being run and we don't expect full results until tomorrow. Initial results show NO cancer cells in the fluid and very few white cells. Just some blood and protein. She needs another day for the fluid to try to "grow stuff" to see if she might have a localized infection (despite not having a fever). So while we can still hope that this is just another freak occurrence, the most obvious cause is "cancer doing cancer things". Since yesterday, the drain has pulled an additional 150ml, but it appears to be tapering off. They recently turned off the vacuum (which was actively sucking out fluid) and are going to see what happens. We're hoping the draining stops. And if labs all come back negative, they can look into removing the drain and stitching her up. According to x-rays, her right lung has been noticeably "diminished" by this fluid pressure. They say they don't believe it's "collapsed". The hope is that with the fluid gone, it will slowly get better and re-inflate. but there is a chance of permanent damage. It's too early to tell. There is some visible improvement between before/after images. Before images showed pretty much all white on the right lung... you couldn't even really see a lung. This morning there is at least some gray/black on that side of the image, though extremely 'cloudy'. Another x-ray is scheduled for tomorrow. Also to note, every time she is moved, she starts coughing quite a bit, and bringing up really thick mucus (she hasn't had productive coughs in a while), so is she possibly clearing some of this 'cloudiness' out on her own? ~~~~ She's certainly not chipper-Julia, but today might have been her best day since coming to the PICU - as far as comfort, alertness, interactivity, etc. And while still weak, she can already control her iPad better than she could the last 72 hours. She is also more herself. We've gotten several bigger smiles today, more enthusiastic head nods, a few no-fingers, and even some giggles! We haven't seen giggles in a while =) She played with her grocery basket again (very weakly, but she did it), and she even wiggled out of her no-no (the cast on her right arm used to prevent her from pulling on the drain) several times in order to control her iPad. And she's very opinionated again (...that's my girl). So, still very stick, but definitely improvement from this procedure. I guess we might know more about what we're dealing with tomorrow. ~~~~ Picture: Julia getting out of her no-no, her fancy fluid-collection thing, and Gabriel falling asleep on cousin Kinley <3 Video in comments: Julia waking up after I got to the hospital... letting me know that her priorities have not changed. I added on this AMAZING tribute that "Julia's biggest fan" Chelcee made <3 She perfectly captured Julia's fighting spirit and beautiful soul in just 45 seconds. It's perfect. And it's nice and upbeat and dancy, just like Julia would be if she had her way =) I added it to the end of Julia's video clip.
YouTube: https://youtu.be/1ddjSknBP8U . . .
********** ~~ 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