November 5, 2019
I'm... exhausted. But in a weird, totally amped-up way. I have been researching NON-STOP for days. I mean that just short of literally. I'm still up at 5am speed-reading books on treatment protocols. I've had three different phone calls today, with more scheduled that I missed. I have so many email drafts full of information - what works, what likely doesn't, what might be counter-productive, what is proven safe for kids, what can be gotten OTC versus needs to be prescribed... so much stuff. Medically, even with the limited available clinical trials... we have no options for her chordoma. But alternatively... there are definitely some things I want to try. The science is sound, and the personal accounts are believable and numerous. So I have mostly nailed down an approach I'd like to take with her cancer - complementary to her new oral, low-dose, metronomic chemo. I want to start immediately and I need CHOP on board. I just needed to take a break from the lengthy proposal email I've been writing for her team all day, so here I am to do Julia's update. Total topic switch, but I've personally had a very hard time looking at her "bad eye". It makes me sick to my stomach to see it. Her pictures and videos recently have been from a specific angle so the eye is not obvious. And I found myself making it a point not to look at it. How awful is that? Up until my epiphany while driving home last night, it was just a constant reminder that her tumor is back and growing out of control. But then I realized something... THANK GOD HER EYE IS WEIRD! If her eye wasn't being affected by the cancer being in a specific place, we'd have NO IDEA her cancer is growing again. None. Her last scan was stable, and another one wasn't scheduled for many months. We would be in the process of shipping her off to rehab with absolutely no idea that things are quickly going in the wrong direction. We would be unaware of possible nerve pain, and pressure pain from tumor. We would chalk her fussiness up to being a toddler and not disease progression. We'd force her sleep/wake schedule in the interest of rehab rather than what her body is capable of. And most importantly, we would not be coming up with another treatment plan. We wouldn't be doing ANYTHING. Her weird eye is what made me push for an MRI, even though others said it looked normal. Pushing her into rehab without knowing the cancer was on the move would have been really bad... we likely would have had no notice and no time to try again. So, I have a new appreciation for Julia's bad eye. Actually, we're going to call that her 'lucky eye'. That eye keeps telling us when things are funky inside her brain. . Julia has had a fine day today. Some grumps, as expected, but so much playing. So much coloring. She loves to color! So much sitting up unassisted in her Julia boat. Lots of smiles. Lots of demanding iPad. I just wish we could more easily physically wear her out so she fell asleep easier... but work in progress. ~~~~ I'm keeping that part short so I can get back to my CHOP email. Prayer warriors: we need CHOP to go for this. It's unconventional. It's not clinically proven. But everything is "safe" for children. We need them to go for the whole package, and be willing to try anything given the terminal diagnosis and lack of available traditional options. Oncologists are slowly starting to get on board with adding these other approaches... but I have no idea where hers stand. We've started the conversation, but have not yet received any answers. We need them to say yes, and we need them to start immediately. I hope to have an email out to the team tomorrow.
Oh and apparently Julia is being nominated for "Peppa Fan of the Month" for November <3 if you'd like to get our little Peppa-fiend selected, toss her name and picture in the comments: https://bit.ly/2JTmb8J ~~~~ NEW footer links (will eventually be added to footer). Given my exploding inbox, my sister has helped put together two new pages on Julia's website: FAQ and Birthday Info:
--- FAQ updated a few days ago, please take a look before recommending treatment options and "have you tried"'s. Trying to keep my time in my inbox limited:juliaadamscancerfund.org/faq --- "Birthday Bash" details also here <3 If you'd like to help make Julia, Gabriel and cousins' upcoming joint birthday extra special, please see details here: juliaadamscancerfund.org/birthday-bash-2019 ~~~~
Video in comments, including a short clip from a year ago. This is just before her surgery. Look at chunky Gabriel <3
. . .
********** ~~ 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. You can find them all on my Facebook page or Julia's website <3