A nice lazy Sunday. Little Miss Night Owl was up until 4am, and then woke up at 8. But she had a several-hour nap this afternoon (and is already sleeping again), so at least she's well rested. Vitals are pretty good. Heart rate is sitting higher than normal, and seems to spike immediately after chemo is administered... which seems weird because it's way too soon for it to do anything. Within 10 minutes of administration, her heart rate goes up to the 170s/180s, but she still appears to be just fine. She doesn't look uncomfortable or nauseous or anything. Just keeps channel surfing. So, not totally sure what's going on there. Her left eye is slightly more responsive today (during the flashlight checks), but it's kind of been going in and out this last week, so who knows what to make of that. Her right arm seems weaker in general, like, it seems to tire her out to lift it from the shoulder, but she still has fine motor control from the elbow down. I think because of this, she's been preferring to lay down rather than sit up. It's just easier to control her iPad that way. But she did sit up a few times today, and did her O face when she saw the TV. Pointed at the TV. Nodded yes to turning on the TV... then immediately went back to her iPad and ignored it. After her bath this morning, she was sitting up and pointed to her drawing table. This is the first time since her shunt issue started last weekend that she's requested to do anything besides her iPad. But she also looked REALLY tired (after only having slept a few hours). So she laid back down while coloring supplies were gathered.. and fell asleep. So she didn't get to color, but I'm really happy she showed interest.
Still no barfing at all, so it's been like, days, maybe a week. Which is the longest she's gone in MONTHS without vomiting. She's really tolerating this oral chemo well. And final word that Mebendazole starts tomorrow (yesterday they said "tomorrow or the next day", so we're still on track there). She's been very comfortable all day, other than the heart rate spike after chemo, and hasn't required any Tylenol or anything. ~~~~ Amazon Smile ~~~~
I want to share how to set this up. It's super quick and you don't need to do anything after you get it going. This is useful for anyone who ever uses Amazon. What is AmazonSmile? It is a website operated by Amazon with the exact same products, prices, and shopping features as Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation donates 0.5% of the purchase price of eligible products to the charitable organization of your choice. How to set up:
1. Go to smile.amazon.com
2. Login with your Amazon.com credentials
3. Choose a charitable organization to receive donations
That's it. Super easy. There are TONS of cancer-related charities listed as options:
- Cancer research foundations
- Specific cancer foundations
- Children's hospitals
- Make a Wish / Ronald McDonald house, etc. But there are seriously so many other options (over a million charities) if another cause is more important to you: other health issues, veterans, animals, environment, education, etc. Of course I recommend the *Chordoma Foundation* - which is the foundation leading the way in research for Julia's cancer. (You can just do a search for it when you select your charity.) It's the exact same Amazon, and it doesn't cost you anything to participate. You just need to go to smile.amazon.com, rather than amazon.com. If you use Chrome, you can install this addon (literally a single click) and it will auto-redirect you to smile.amazon.com and you will never have to think about it. That's how I have it set up.
https://chrome.google.com/webstore/detail/smilematic/cojnpobjpbdeceeambolpnbenmjfkfng?hl=en-US And you get a nice reminder when you purchase something that you supported your selected charity =) ~~~~
Picture: Gabriel playing with his birthday dinos at church today <3 Video in comments: Julia just slept this evening, so there's a super exciting clip of snoozing Julia. And I added two short adorable clips from two years ago. I was doing 'last year' for a while... but now 'last year' she was in the hospital... so I went back another year. Cute Julia gobbley-gook talk.
. . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: 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