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October 31, 2019

It's Halloween. Last year on Halloween I called Charlene while she was out trick-or-treating with her kids and Gabriel and told her they found a mass on Julia's brain and it was bleeding. I was looking forward to the kids having a happy Halloween this year... but they are so sad with Julia's bad news that they didn't want to go out =( I don't blame them, but still. 9 year olds shouldn't have this sort of stress. So Aunt Charlene went out and bought a bunch of candy... Joshua and Gabriel appear quite content =) I have a Peppa Costume here for Julia, but there is zero chance she'll let us put it on. She has refused PJs' for a week. No idea why... possibly discomfort from tumor growth (nerve pain), possibly being a fussy toddler, possibly just because it's something she can say no to and we'll listen. And for those who don't check in every day: Julia's cancer has come back with a vengeance. Rehab is definitely off the table. We're looking into last ditch treatment options. . She's been pretty grouchy. At least since noon. Therapy this morning went well. She played with a ball and had a good time! While she was doing that, the child psychologist stopped by just to check in on everyone, so Julia was on her own on the mat with the therapists. They've also noted noted her 'spacing out' sessions - I've seen several today. I mentioned doing a seizure study... but honestly seizures are kind of not unexpected now, and whatever it is, she comes out of it on her own after 20 seconds or so. They're going to discuss possible options. The nerve pain med they're ramping up should help with that, if they are seizures. Her right eye is definitely being affected by tumor growth, it's already much more noticeable than a week ago. A possible cause of her irritability is she hasn't had decent sleep in DAYS. It's like... maybe an hour or two here or there, and it's not restful. Any toddler would be a nightmare. So we're looking into re-introducing some sleep aids. There's also the possibility of tumor-related pain. Her vitals are still good and she says 'no' when we ask if she hurts (but I don't know if we can really trust her answer). Anyway, they're talking to the pain management team tomorrow to see if there's something a bit stronger with Tylenol that would be worth introducing. We can always wean her off if she responds to treatment. . As far as treatment, Reed and I are still personally looking into options. Medically, she will begin a new oral chemo regimen "ASAP" - either tonight or tomorrow. She got some blood drawn an hour ago for initial labs (she did great with the stick!), and Reed signed consent today. This is a much less intense chemo than she's been on since January. The oral chemo will just be mashed up and put into her gtube like her other meds (some people asked how she'd take it since she can't swallow). We're also going to sort of play it by ear. Her team is kind of winging it for treatment this time around, since the cancer is so rare. There are a handful of case studies where there have been some 'really good' responses to oral chemo after IV didn't do well. We're thinking about trying a mixture of medicines, both listed as possibilities, not necessarily documented as having been tried together for this cancer, and possibly considering a different sort of option in a few weeks if she does OK. If she doesn't tolerate anything, we can back off and go a different direction. Comfort is high priority. But again, oncology expects this to be palliative rather than curative. So we're mostly hoping for a miracle response, or buying time for one of the other options to do something. This chemo is not expected to make her lose her hair <3 On the grand scheme of things.... who cares. But still. She has little stubbles on her head that can now be seen from a few feet away AND she has the teeniest-tiniest eyelashes coming back! They're the cutest 2mm eyelashes ever <3 And even a hint of eyebrows. So we have some things in the works. All long shots... but something. Really right now we're hoping for Julia to GO TO SLEEP. She will have a much better today tomorrow if she could just zonk out for a solid 6 hours. ~~~~ Pic tonight: A closeup of Julia's eyelashes! Also the mega-load of Halloween candy the kids got in lieu of trick-or-treating. And I got home late last night to my entire downstairs having been cleaned. Very few people have both my key and security code (and I ignored my security camera phone alerts knowing deliveries were expected at that time)... but they did everything: picked up toys, vacuumed, took all the trash out, dishes, litter, cleaned out the fridge. All the musts were done, and the house looked fantastic! Cleaner than it has in a year. But all my pretty Halloween pillows were just thrown on the couch without a care for how they looked. Only one friend would do all the hard work and then not pay any mind to decorations. That would be Megan. And I understand her sister Laura and son Eddie helped out <3 It was seriously so nice to go home to an unexpected clean house. And in the past, if a friend had broken a bone or something, I would find a stuffed animal and make a cast on the leg or whatever was injured. So sitting on my counter was a big vampire Paw Patrol stuffed animal - seasonally appropriate - with little bandaids over the heart <3 (This the from the least outwardly sentimental friend I have.) It was a really nice surprise after a pretty crappy day. Video in comments: I don't have my laptop (with video editing software) here, and the online cropping tool isn't working. I try my best to keep staff faces out of videos. So the nice therapy video I have for Julia isn't ready. I'll put Gabriel's cute clip in the comments and add Julia's when I get home <3

YouTube (Gabriel):

(Two separate videos since I uploaded them separately tonight) . . .

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