September 16, 2019
I was going to post about how great she's been feeling these last few days, and about why she hasn't been out in the stroller (in months), and that I'm excited to FINALLY see her out and about. She's at the end of her chemo cycle and she just feels so good. But we just got word that chemo starts tomorrow. I'm trying not to be disappointed... I was just so looking forward to Julia's good week and possibly a stroller ride. There are three considerations for her going out of her room in the stroller: 1.) No active chemo, 2.) White blood cells not low, 3.) Not barfing. She just hasn't had a stretch of days (in months) where she's met all these criteria. But she has been doing so well recently - feeling great with no vomiting - that I was sure she'd get out of her room this week. And I was surprised when they said chemo's starting tomorrow. It's a week earlier than I expected. I guess that means she's completely recovered and ready to go. BUT. Unless something crazy happens (which is possible, but unlikely), this is her LAST ROUND OF CHEMO!! Only 5 more days of being pumped full of toxic chemicals. Then one more recovery period. Then we move on. . ...I wrote that part earlier. Now I'm down at the hospital and Julia's having a rough day. The mucus has gotten worse. I didn't think it could, but it found a way. She MIGHT get 5 seconds at a time with no snot on her face, and it's been like this for hours and hours. They tried taking her off her HME to see if that might help, and it didn't. On top of that, she woke up at 4am and hasn't really been back to sleep, so she's way over-tired. We've tried coloring, playing with groceries, watching Peppa, etc. Just fuss fuss fuss. And now more recently she's started throwing up more. For a while it was clearly gagging (from the mucus) that just caused vomiting. But now it's actual vomit. It's never reassuring to hear the nurse say, "hmm, I wonder why it's so dark". Julia shouldn't be throwing up anything... her feeding tube should be in her intestines. She never even brings up bile. So we're wondering if the tube is out of place and she's throwing up her formula. Blood is another option, but Reed says it doesn't look like the last time she had blood in her stomach. I guess they're going to go request an x-ray to see what's going on in there. [Edit: yes, they are starting some tests now.] But prior to the increasing evening-misery, she actually had a pretty good day. She participated with both Speech and OT. With Speech she made more progress using the communication board. They were getting three icons in a row, "Tissues" "In" "Trash", and they're 90% sure she did it purposefully. Then OT stopped by and they worked on the concept of putting particular colors "in" specific containers. It went well. She cooperated. (Now she's throwing her toys across the room.) ~~~~
Picture of Julia seeing her kitty cat for the first time in a while =) Lots of smiles and waves! And as I was typing this update, we tried FaceTiming Gabriel to get a smile out of Julia. OMG... he started singing his ABCs to her and she couldn't stop laughing! It was the SWEETEST thing <3 <3 I quickly started filming, and first smiles all day thanks to baby brother. In comments. (And then when they just said goodnight, Gabriel yelled "No! Jew-ya, Jew-ya!" And Julia shook her no-finger. OMG my heart...)
YouTube: https://youtu.be/i9CowJ2NPN8 . .
. ********** ~~ 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
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. You can find them all on my Facebook page or Julia's website <3
