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December 17, 2019

Julia's been comfortable today, and actually seemed to be in a pretty silly mood! All vitals are fine, for her. Not great for a typical child, but not concerning (heart rate 150s all day). She needed Tylenol once earlier when she was irritable, but nothing since. She has very little movement in her right arm. Reed tried to hold it up to the iPad for her today, and he could feel her twitching. She was clearly trying to move it. And then she got frustrated. I can't imagine what's going through her head. They weigh all her diapers, and of course know exactly what her intake is since she's g-tube fed, and I guess her output has been low. So she had to get a catheter =( Turns out she has a UTI, which can just happen sometimes. Their hope is the UTI is what's causing the new not-peeing problem, rather than tumor pressure shutting something down. They have had to cath a few times, and now they are thinking she's not peeing at all, so they're looking into a more permanent solution. (They got her all setup and legs propped up for the first procedure, and then she pooped everywhere. lol. She has limited control, but... I like to think she did it on purpose.) She's requested LOTS of kissies today. And Reed came back from lunch while the therapists were in the room, and they sure had Julia in a silly mood! I thought they had stopped visiting when she got too weak to participate, but apparently they still try to stop by several times a week and do what they can to get her to interact. Today they read her books and were just being silly. Reed got an adorable video of some chunk-faced O's and smiles =) She is making less noise now because they inflated her trach cuff a bit recently, so no laughing sounds, but some really nice smiles! I'm so happy the therapists still try. . I talked to our oncologist some more about clinical trials. There are a few that keep being recommended. Julia's particular chordoma doesn't match what existing researching is for, so there is really limited info to go on. I guess the official plan is to see what "January scans show" (that's the first I heard mention of "January scans", so I guess they DO plan to do the typical 3-month post-treatment-start followup) and make decisions from there. If she shows improvement, we would of course just continue existing treatment. If she doesn't show improvement, we could make the decision to stop chemo, get it out of her system, and then try to get our hands on one of these clinical trial drugs, off-trial. She would not be eligible for the clinical trial, but sometimes you can still get the medications. But because they're so early in testing, they don't know how the drug would interact with chemo, so they would want the chemo (and other meds) out of her system. Obviously it's a risk to just stop all treatment for several weeks, especially now, and with absolutely no information as to whether this clinical trial would do anything, so our oncologist's recommendation is to give this current treatment a proper chance to work (which is 3 months), and then if Julia is still hanging on, and it's not working, we can certainly explore more uncertain options. So that is the plan, and we're in agreement. She just recently maxed out on the Mebendazole dose (so she's now at full strength every day), and both chemos are back in her daily routine, after the 1-week break. Both treatments are expected to take 2-3 months to start seeing improvement, and we're not there yet, so her continued decline is expected, even if they are destined to work. ~~~~ I got the OK from my doctor to visit, so I'm here. Hesitantly. I'm keeping my distance from her and Reed. She was awake for the first 20 seconds I was here, and I got a happy smile reaction (and then she asked for daddy). But she fell asleep like 20 seconds later, so we haven't had much interaction yet. Video in comments of some Julia smiles <3

Edit: Charlene just called to FaceTime and said she wants to talk to Julia. Julia just fell asleep, so Reed said "OK, but don't wake her up". As soon as the phone gets over there I hear Gabriel yell, "HI JEW-YO!" <3 <3 <3 . . .

********** ~~ 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 2018. You can find them all on my Facebook page or Julia's website <3

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