June 21, 2019
Super late update. For Reed's night home with Gabriel, we went out to dinner with Manny and Megan. It was really good, but service was sloooow, and we didn't even leave until after 11! Julia's update was on my mind =)
Julia had a better day today! Vitals are all great. She was grumpy again in the afternoon, but she had a large stretch of time in the morning where she was her normal happy self. The nurse said she was smiling and waving, and pointing at her cartoons, switching channels, and was VERY interested in coloring her blankets with markers! She even cooperated a bit with OT as well.
Oh, and the nurse said she's started yelling quite a bit, but she doesn't believe she's angry or sad (no tears or elevated heart rate). She just seems to be yelling to yell. They think she might have figured out a bit about vocalizing around the trach during her fit and is now just seeing what she can do =)
No one is concerned about her massive tantrum yesterday. Apparently, anger issues are very common with kids when coming out of anesthesia, and they usually taper over 48 hours. (If she was just as angry today as yesterday, they would have started looking for causes, but I guess she got better as expected.)
I've been a bit down last night and today thinking about her MRI results. It's taken many hours of conscious effort to honestly understand this isn't bad. Like, at all. I had to picture how I would feel if we were told it had grown. That would have been an awful, horrible, hopeless feeling. Like, January all over again (and we're already doing alternative treatments... so where would we even go? And talking to Reed in person now, he said the doctors had never been so adamant about anything -- that the cancer has 100% not grown even a fraction of an inch and they are absolutely certain.
Also, I received soooo many encouraging messages today! So many "been-there-done-that" cancer moms let me know that no growth is WONDERFUL news. Most of them say their doctors are 100% good with with stable or shrinkage. Many said that their kid's tumors did the same thing - shrank, stable, shrank, stable - and that's just often times the way chemo goes (and is one reason chemo treatment is often YEARS not months - it takes time, and this is a stubborn cancer). Several said that the whole "it's dead" is an actual thing that happens. Some have kids who have had a stable "dead" tumor for years with no issues; they just go back every 6 months to confirm nothing is growing. (And many moms messaged me letting me know that their kids also get the "anesthesia rage" for a solid day or two after going under - so that was reassuring.)
So after thinking about things, and reading everyone's messages, I feel a LOT more optimistic about the news!
And as I'm sitting here racing to type this, I am listening to Reed and Gabriel interact on the floor (at midnight because he's so excited when Reed's here he can't sleep). It's so nice. He misses Gabriel so much, and Gabriel is growing so fast - new words every day. The nurse said Julia is sleeping really well without Reed, as usual (and she needs it). And I'm in a much better mental state about the NO GROWTH news. So tonight is a pretty good night!
I'm going to toss two pictures together and pick a random Julia video from a year ago, just because I know people are enjoying getting to know her when I don't have a current hospital video. I can't wait to go down tomorrow to see my happy little girl <3
YouTube: https://youtu.be/MHZgURsAHRo . .
. ******** ~~ Julia Adams ~~ ******** ********** Official Links *********** (These are here because of scammers) ********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* 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