August 14, 2019
Grumpy day. Her blood counts are starting to drop, as expected. She hasn't needed blood yet but I'm sure she will over the next few days. She's just been suuuuuper grouchy. She hasn't wanted to do much of anything besides grump. No play time, no therapies. She didn't even start her HME until 7pm because no one wanted to interrupt the nap "she was going to take at any moment" (still hasn't napped). But other than that, vitals are fine, and vomiting seems to be under control. So much snot though!
We were told that there is a meeting next Wednesday to talk about what the next steps are: what things look like after treatment / how she transitions to home, etc. I said I assumed "more chemo" could be an option, depending on what the MRI shows...but apparently that is not the case. She didn't want to speak for the oncologist, but the way she understands it, more chemo is NOT an option after 12 cycles. I guess it's too harmful, and whatever good it can do will have been done by 12. So that's like... I don't know. Nerve wracking.
I mean, if she can leave the hospital with no tumor, then great! But the tumor showed no shrinkage on the last MRI, so I'm sure it will still be present after 2 more cycles. I guess it could be dead (which would be super awesome), but we'll need more tests to determine. After the shock of "she's dying", and then the months of slow but steady improvement, I've just gotten comfortable in this state of active treatment / hospital living. I haven't really given serious thought to what "after" looks like, and whether that's good or bad...
And they will also talk about discharge options: whether it makes the most sense to go home, go to a rehab facility, or go to a transitional care unit.
I have lots of questions, but I guess they will have to wait until next Wednesday.
I wanted to quickly mention the iPad stands from yesterday's post! WOW! The response was immediate <3 I believe I crossed paths with my Facebook helpers, and more than one brand new stand is on its way. On top of that, one of Julia's Facebook followers reached out to the stand company (Levo) and asked if they'd be interested in donating. I've since been in touch directly. I introduced Julia, explained the shortage, and described (with pix!) the lengths everyone goes through to keep this stands in service, like securing them with medical supplies. They want a count of what's failing, whether it's the stands slipping down or the tablets falling off, and it looks like they're going to get them fixed up! I am just so thrilled by the response from everyone involved - you guys and the company. Not only is Julia getting a new stand, but some other kids will get one too, and the worn down ones will get fixed.
I quickly created a "Lovingly Donated by Julia's Army" stickers and I will affix those before they are delivered - of course there will be pictures <3
Pix tonight! Last night I got a loooong FaceTime call from Julia - well over an hour. It was so nice to feel connected to her even though I wasn't there <3 She didn't want to actually talk or interact or anything, she just wanted to make sure I was there to watch her watch cartoons. And then eventually she was clearly getting too tired, but every time Reed tried to move her or suggest it was time for bed, she'd start with the no-finger. She insisted she was awake enough to keep FaceTiming. ... I took several screenshots over the final 20 minutes that show just how awake Julia was...
And video in comments is of... contrary Julia toddler <3
YouTube: https://youtu.be/JJj-c3TZedE .
. ********** ~~ Julia Adams ~~ *********** ************* Official Links ************* *************************************
Julia's official pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
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. You can find them all on my Facebook page or Julia's website <3