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February 11, 2019

Another pretty good day for vitals.  Heart rate in the low 100s, and BP 93/50 - the first normal toddler blood pressure since she checked in.  Oxygen saturation and ET are a bit worse today (mid 90s and low 60s), but they say sometimes stuff like that just varies.

No concerns medically (such as a fever).  I believe they're starting to cut back on some BP medication doses to see how she responds.  She's been very sleepy today, but has opened her eye several more times. Just the same little peek, but it's definitely there!  She's drained the iPad of batteries watching her favorite cartoons again, though she can only stay awake for a few minutes at a time.  We like to think she's just resting her eyes and still listening though =)

She got her head shaved by the nurse.  I'm glad all the stragglers got taken care of, but it is hard to see her looking like this.  Just a week ago she had beautiful, long hair, and today she looks like a ... cancer patient.  I know it grows back.  But that only makes this part suck a little less.  She does look really cute with the headband ChildLife gave her, so I'm looking forward to trying on some of the bands and hats her Facebook friends are sending =) 

The biggest news today is that round 2 of chemo starts TOMORROW.  I thought Reed said it started ON the 22nd, but he said it started on the "22nd day" (of the chemo cycle apparently)... which is tomorrow.  He said the doctors are anxious to hit it again.  It will be the same treatment: 5 days of chemo, and then 1 day of a recovery booster.  It put my stomach in knots knowing that we're going to do this to her while she's awake and aware.  It's such a hard chemo, and it was much easier knowing she wasn't really... with us so much.  I hate that I can't even explain to her what's going on, and why she feels so miserable and can't move =( 

I hope this next round of chemo goes as smoothly as the first one did - no complications, and a fast recovery.  They expect her to recover more slowly with each subsequent round (by about 2 days).  And this chemo has a high rate of complications (85%) - so let's hope she beats the odds again and does just fine.  We're continuing the same doses of all alternative therapies.

As far as Reed and I: My cold can't figure out if it's coming or going, so I stayed away from the hospital again today.  I honestly can't even tell if it IS a cold.  Or anything.  It's like, 10 coughs a day... but I normally have 0 coughs a day, and I'm extra paranoid right now.  When I got home last night I felt like I was starting to come down with a sore throat and everything, and then nothing ended up happening.  So I'm starting to think it's in my head because I'm so nervous about getting her sick.  But Reed is starting to feel better, so that's good =)

And for Julia's new friends - A month ago, right after we received terminal news, I quickly put together a video of Julia's first two years.  I was afraid it would be too sad to share after she was gone, so I shared it immediately.  Well, it's been a month and she's still here(!) so I wanted to share it again in case you missed it, and would like to see her before she was sick =)

. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraiser:  T-shirts -

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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