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November 4, 2019

I wanted to start with some vitals, but I just looked at the monitor and it looks like she has ripped everything off... so the monitor is blank. No vitals for this little girl. But from memory, they have been decent today. Slightly elevated heart rate (150s/ low 160s). Julia has had a fine day. Extra fine now that this stupid seizure cap is off her head! Of course, they found nothing. And no one visually observed a 'space out' episode during this time either, so... not surprising. And just from some random info I've gotten over the course of this whole thing, if they are seizures, they could be brought on from being tired (she's slept well this weekend). Or perhaps they are related to her stroke history. I understand stroke patients can become overwhelmed if they are overstimulated and then kind of shut down. No idea if that is a seizure or not. But it is interesting that we've observed the space-out episodes much more when she has a lot going on, like during therapies or when her cousins are here. Either way, at this point I understand the plan is to just keep watching her, and if the space-outs start again, they might add these anti-seizure meds to her daily regimen. Our big ongoing conversation is conventional treatment with the addition of alternative medicine. (I guess I'll remind for a few more days that we're fighting aggressive cancer growth as of a few weeks ago.) We will meet with our oncologist in the next day or so to add another option to her existing oral chemo. She's responded well, so we'd like to move forward. I've heard some positive things about the stop-new-blood-vessels medicine (tumors are constantly making new blood vessels - that's how they grow), so I think I'd like to push that over an additional chemo. The part that is consuming pretty much every waking hour is alternative options. There are dozens. Hundreds. Some are obviously total BS, others have some serious merit. And some that have the most merit, sound like total BS on the surface - like dog dewormer. Seriously. If you were shocked at that suggestion, you'd be in the majority. But apparently it's 'so crazy' that it recently entered stage 2 clinical trials for glioblastoma. Safe for humans? Being legitimately researched? Hundreds of verifiable success stories? Sign me up. So clearly I would be doing Julia a major disservice by dismissing everything I initially roll my eyes at. Because being extremely skeptical, that's everything. But with all these options we also need to be careful about throwing too much at her and 1.) stressing her immune-compromised system, 2.) causing a bad reaction by combining two things that shouldn't be combined, or 3.) counteracting our treatment options. For example, some things that are super healthy for someone without cancer, stop being healthy when there is an active tumor. If we pump her full of this 'healthy stuff' in the interest of boosting her immune system, we might inadvertently be turning her cancer into super-cancer. And of course, opinions on this are all over the map. Also, given her severely weakened immunity due to 12 cycles of intense chemo, we have a judgment call to make on whether we think an all natural approach has any chance of stopping this extremely aggressive cancer. Honestly, probably not. Not with how quickly it's growing, and not with its ticking-time-bomb location (a brain stem with limited room for tumor growth before fatal consequences). But there are alternative options that actually work really well with low dose chemo - trapping it in the bad cells to make it more effective, while protecting her body as best as possible. Maybe if we get traction on this cancer again, we can look into switching to a more natural, immune-boosting, sustainable, supplement approach. But right now we need to pick a direction and go for it, making good decisions on whether these other well-meaning, and possibly otherwise legitimate options, would actually hinder progress. Is that super-healthy vitamin C supplement helping her body kill the cancer, or helping the cancer protect itself? Lots of opinions. Whatever "unofficial" research seems to show, we need CHOP on board. They are looking into everything we've asked about. And I've continued to stress that all possible side effects need to be weighed against "dying from cancer". I seriously hope they're open to exploring some off-label treatment options, since what is medically known unfortunately is not enough for pediatric chordoma. But as we all work to give Julia the best chance of another miracle turn-around, she's had a wonderful day =) Lots of smiles, lots of coloring, lots of laughing at some silly "find baby shark" cartoon on her iPad. Oh, and we even saw her color PURPOSEFULLY for the first time! Like, she scribbled on Peppa's hand, and then Peppa's other hand! Or on both of her shoes. Or her eyes. Rather than just randomly all over the page. <3 ~~~~

Birthday stuff: So many great suggestions for how to celebrate everyone's birthdays, thank you! Many people suggested that Child Life help put together a joint birthday here at the hospital, so that's what we decided to do =) I averaged their birthdays and it came out to Wednesday November 27th. Flu precautions (and limited non-immediate-family visitation) starts on December 1 this year, so the kids will all still be allowed. We'll get the play room reserved, and be able to decorate and do presents. They will go through a nice organization and get a custom cake made - maybe we can hit all 4 kids' interests: Peppa, Paw Patrol, Minecraft and Harry Potter (...or Paris... Kinley goes back and forth between which she likes more). It makes me a little nervous to plan something three weeks out... with the visual worsening of Julia's eye (which suggests rapid continued tumor growth of course). But I'm trying to be hopeful that she will still be 'herself' in three weeks and all 4 kids can have a really special party. So, I guess that's official =) If you'd like to be a part of this mega-birthday celebration, please feel free to send a card or gift to my office (...sorry Anthony!) [] Seriously NO obligation or expectation, but several people have asked, so I wanted to get this info out there. Of course, unless something crazy happens between now and then, I will take tons of pictures and videos to share. Reminder:

Gabriel will be 2 (loves Paw Patrol)

Julia will be 3 (loves coloring - literally has every Peppa thing in existence - cards might be best)

Cousin Joshua will be 9 (loves video games and nerf guns)

Cousin Kinley will be 13 (loves teenage girl stuff: clothes and makeup) ~~~~ And Julia sat up in bed until she couldn't sit up anymore. She insisted she wasn't tired, but she became such a weeble wobble that Reed turned off the lights and laid her down. She was out in like half a second! Short cuddles video in comments.

********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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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