February 15, 2019
Julia had a calm day, but they're pretty sure she's uncomfortable. Not in pain, but likely just not-fun side effects from chemo. Day 4 of 5. Her heart rate has been elevated, and she's much more easily agitated during things like diaper changes and collar care. Vitals: heart rate 140s, ET mid 40s, BP 130/83.
Our oncologist is SUPER happy with how well Julia has tolerated the chemo so far. The #1 side effect of this one is vomiting - it's often a struggle to keep nutrition down. Julia hasn't thrown up once (maybe it's being kept in check by the alternative medicines?) So our doctors is just thrilled at how well it's going; other than being really tired, no complications or even really many side effects. Her counts are low and continue to drop, so she should bottom out and be at her worst in just another few days.
With her being tired, we haven't gotten much of anything as far as movement. Her hand hasn't moved again (at least that we know about). She did open her eye a crack while she was super agitated, but Reed can't be 100% sure it was intentional, or just kind of happened when she was squeezing her face. She definitely did bite down on everything going in her mouth. The nurses sometimes have to wrestle with her to get it back out =) So she's letting her displeasure be known. Reed even tried to give her Elephant, but she probably thought it was a suction tube or medicine, and she used her tongue to push it back out. Which is great that she can do that!
Reed talked with the nutritionist/oncologists about our desires as far as switching formulas. The nutritionist left for the day right after he talked to them, so I don't think any progress was made with switching today. We'd like something with actual food and not chemicals: organic, raw, and plant-based if possible. They said they are open to whatever, including our own mixture, as long as their pharmacists know exactly what's in it and can confirm there are no issues with her chemo. Our doctor gave an example of one patient where a particular supplement's ingredients passed the pharmacists lists, but the little kid developed a major toxicity issue - they eventually found that the coating of the pill was some soft of grape seed extract, and it really messed with the chemo. Also, sometimes more natural, healthy formulas have probiotics, which introduce bacteria into a compromised immune system. So they just want to be super careful with what we're giving her, and it makes sense, but they aren't opposed to switching her diet around.
So our plan is to find the BEST 'pre-packaged' formula available for her daily consumption, to replace the synthetic formula she's getting now, and then we will create our own "mega cancer fighting booster" (approved by pharmacy) to give in addition to her food. That's my initial plan anyway, after about one day of research.
In non-medical news, a new Facebook friend let me know that Julia and I were mentioned by the West Virginian senator during one of their sessions yesterday, in the context of needing more childhood cancer research money. I thought that was awesome! I can't believe her story has reached people who can make a real difference =) You can watch that clip here - starting around 11:28:20, and he mentions Julia just a few minutes in: https://bit.ly/2X6jwxB
And I'm getting tons of messages about where I'm getting my CBD oil, so I just wanted to answer it in a post. I've received a lot of CBD oils to try, along with a lot of opinions. I was buying them at a local tobacco shop called Frolic (in Exton, PA). They carried some really good stuff, but I've quickly bought out all the highly concentrated ones! So after research, my most recent purchase was through this website: (www.naturallywellforlife.com || Coupon code I use: danaboyd).
From my research, this is some of the best you can find, and the company is filled with the most amazing people - they actually care. Just today a post got through the grapevine to me, about one of their reps wanting to donate their commission this month toward a bottle of 3500mg CBD for Julia. I think she was looking for other reps to jump in on it. Like, an hour later I saw a notice that the bottle was already being shipped!
So if you're looking for CBD and are overwhelmed with choices (because trust me, knock offs are everywhere - like that $30 bottle you can find on Amazon), then this is a GREAT place to start. I will add this link to my footer.
I'll try to get more info on the RSO and PEMF Therapy Mat to add to another post, but CBD questions seem to be the most common.
And I took some good pictures of Julia's scars... since we can finally see them all now that she's bald! The long one of the back of her neck is her original spine fusion surgery (after the initial cancer removal) - they fused her skull down through her C4 vertebra. You can also see 2 of the 8 pin holes that bolted the halo to her skull. On the other side you can see the incision from the internal shunt, and then... I guess the hardware from the shunt is that big bulging thing under the headband. And finally the 2 other bolt holes (these are the ones that looked AWFUL a week ago - they look pretty decent now). The other 4 bolt holes are on her forehead, and the initial shunt scar is the incision on the top of her head.
... And Reed just sent me a picture for my post. She looks like a genie.
********* Official Links ***********
(These are here because of scammers)
Julia's *only* website:
Julia's *only" Facebook page:
Julia's *only* GoFundMe:
Julia's *only* official fundraiser:
T-shirts - https://bit.ly/2MQc0lF
Where I buy Julia's CBD Oil (3500mg bottle):
www.naturallywellforlife.com || Coupon code: danaboyd
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