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November 16, 2019

Julia had an OK day today, considering. She is comfortable and content. Smiles are very limited lately. No clapping or laughing. She doesn't use her left arm much at all. Her vitals have been OK. Blood pressure is fine. Heart rate fluctuates between fine and aggravated. It spent some time in the 170's today. Stitches all look great - no concerns at all with surgery sites. She slept really well last night and has taken several good naps. The condition of her right eye bothers me a lot, as it's a very obvious sign of disease progression. A month ago it was fine. And then it started getting out of sync with her left. Then the eyelid closed. Now the pupil just stares off to the far right. Lots of decline in just a few weeks. Her left eye still appears to move around fine, but the pupil reacts minimally to light. She still wants to sit up unassisted in bed, which is awesome. She's asked to do that several times today. But she can only sit for 15-25 minutes before getting tired. Now when you ask if she wants to lay down she nods yes. A month ago she'd resist laying back down for so long that she'd just fall asleep sitting up. She has not had any interest in playing with toys this past week, but she does seem very content with her iPad and some hand holds. . She hasn't thrown up at all in days - she's tolerating her new oral chemo just fine. Tomorrow they will add the Mebendazole. This is a medication being used off-label due to its cancer killing properties. We have no idea if it will work with chordoma, but it's doing some cool stuff in other cancers, and it has low toxicity and no known interactions with her other meds. So kind of... why not? If she tolerates it well, we'll look into adding a few more things to ramp up this complementary method. We're still in the PICU waiting for a private PCU room to open up. So far our stay here has been decent. I miss the PCU. We have a bigger room here, and a better view, and I definitely don't mind the slightly faster access to emergency help... but I feel she was better taken care of in the PCU. If one more person tries to draw blood from her without using numbing cream first I'm seriously going to flip out. The PCU always numbed her and used heating pads 20 minutes before the blood draw lady even showed up. The PICU just sends someone in who digs around and seems completely oblivious that she's causing Julia pain. I already had to ask her to stop once, and then I confirmed (two days in a row) with the nurses that it's in Julia's chart to use numbing cream. And yet, first thing this morning, Reed had to stop them from sticking her again without it. (And the phlebotomist actually seemed ANNOYED that she had to come back later because "she has other patients".) ...We're in a children's hospital. Getting your blood drawn hurts enough as an adult. And we understand the necessity and know to sit still. The numbing cream works great on Julia - they used it every time they accessed her port - why the hell is this not standard when working with kids!? (If there is a legitimate reason, seriously, let me know.) So... we can't risk the germs with Julia's condition, but SUPER anxious to get back to her PCU nurses. She just seems like a number here in the PICU. ~~~~ I'm personally not having a great day. I'm just very tired. Like... in life. Today it was house stuff. There are things I need to do and I'm just not very handy. ...I never needed to be. I would just call my dad. He liked fixing things, and I liked hanging out with him, so it never even crossed my mind to do anything on my own. My incompetence has led to some funny one-sided conversations while trying to figure out how basic tools work... I know he'd be laughing at me. But today I had to go to Home Depot and I'm lost as soon as I step foot in that store, so I missed him a lot. ~~~~ Pictures: Julia has spent most of the day as a Julia burrito. She still says no to PJ's but she's been saying yes to blankets. Also added a few in honor of Gabriel's 2nd birthday <3 Video in comments as well - it shows Julia's stitches (so don't watch if you don't like that sort of thing), with a bonus clip from 2 years ago.

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