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October 30, 2019

Today is the day before Halloween, so it's been a full year since Julia has been in the hospital. I had planned to do a whole progress/celebration video in preparation for rehab... but life had other plans. Long post here, but surprisingly not all sad. Last night's post was shared a ton (thank you) but just in case anyone missed it: Julia's cancer has come back, and it's bad. It's all around her brain stem, down her spine, and in the membranes. This growth is all within the last 5 weeks. We were told at our meeting yesterday that there are no medical options. However, that doesn't mean we aren't still trying. Reed and I are in total agreement: if there is anything we can try, even if it's a long shot, that has any potential to destroy this cancer and does not cause her distress, then we will do it. We understand the most realistic outcome, but we are unable to give up and do nothing. Our first, second, third, and forth strategies didn't work, so we're onto a fifth. Perhaps her particular cancer will respond amazingly well.... perhaps it won't. But we will know that we did everything possible while keeping her comfortable and happy. That said, thank you all for your alternative suggestions. My inbox blew up last night. I did read everyone's messages, but I only responded if it had info about treatment -- I just didn't have time. But thank you <3 Just as a reminder: Julia has been on high doses of CBD and RSO (Rick Simpson Oil) since January. Those were most commonly recommended. There are a few other that seem to have merit, so we're looking into those ASAP. . In addition, we spoke with our oncologist for quite a while today. I had some specific questions to ask, raised by the family in New Zealand who initially talked to me about the chemo protocol. And we have some options. They are generally 'palliative' in nature (to extend life while keeping quality high), rather than 'curative'. However, a few case studies have shown 'miraculous' response to these options with clival chordoma (Julia's cancer). It's not the norm, but her cancer is also so incredibly rare... they don't have much to go on, so what does 'norm' mean anyway? These options we're considering are one or two much lower dose oral chemos. Side effects are minimal. Bodily response can be gauged, and acted upon, right away (as opposed to something being shot into your veins where you have no choice.) There apparently is evidence where patients did not respond totally to the IV version (like Julia was on), but then had an amazing response to the lower-dose oral version. And our oncologist did confirm that while sounding similar, these two can have different responses. In fact the oral, slower-dose, more-steady protocol is the "other" very popular protocol for this cancer, apparently used by Dana-Farber if I have my info correct. It was also super encouraging to have Reed's brother here, who, with his nutritional/medical background, generally has a strong distaste for chemo. After speaking in depth with the oncologist, he is on board with exploring this much less intense chemo option. This would not replace anything Reed and I are looking to do on our own. But... options. Long-shot options. But options are hope, and her quality of life would remain a top priority. Her cancer is spreading fast, so who knows if anything can possibly have an effect. But then I think back to January... she was IN coma when treatment stated. She's already been a miracle over and over again, right? Maybe she's not done. ~~~~ Medically, we're seeing the effects of cancer growth in her physical presentation. Ophthalmology confirmed it's likely pressing on one of her optic nerves. Her eyes are together when she looks to the right, but they both lag when she looks left, but they lag at different rates so that's when it's most noticeable that they aren't together. She also cannot look down with her right eye. I've also noticed she's more stiff around the neck, likely from tumor growth - this was one of her first symptoms over a year ago. This isn't the sideways tilt her head has had since spring thought - that's unrelated. And several times today we've noticed her 'spacing out'. She's out of it for maybe 20-30 seconds or so, then comes back. I guess it's possible that this is seizure related, as suggested a few days ago, but nothing has been confirmed or tested yet. It's just a thing that is happening. There is also a possibility (likelihood) of nerve pain, due to the cancer being in her membranes. She was on a nerve pain medicine back in January, but eventually weaned off because she showed no signs of discomfort. Recently she has been a bit more irritable, and we've noticed she rubs random areas of her body, like her shins. So to be safe, we're putting her back on the nerve pain med. This also has a bonus of helping to 'reduce the seizure threshold'. But even with this possibility, she has appeared extremely comfortable and content. ~~~~ Despite everything, she's had a great day! She has not slept well, so she's a bit zombie-like, but she had all three of her therapies at the same time (that's just how it worked out), and she loved it! She didn't want them to leave <3 And she had a BIG visit! Aunt Charlene, Uncle Jonathan, Cousins Kinley and Joshua, and Brother Gabriel <3 They were here for HOURS and Julia was so interactive. They colored, and snuggled, and watched Peppa. Julia was held so much =) She even relaxed with Kinley for a solid hour watching her iPad. We got so many pictures and videos. She she was such a trooper given how exhausted she probably was (she was so busy asking for her iPad last night that she didn't sleep until 7am). ~~~~ As Reed and I figure out what we're doing I will definitely keep everyone updated. I am currently not working, and will spend every day down here until we know more. . Short video in comments <3


YouTube: https://youtu.be/aRRb_h8MC-Q . . .

********** ~~ 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






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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!