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March 28, 2019

Mixed day for Julia.  Unfortunately she threw up a lot =( So I guess yesterday was a fluke.  They gave her several rescue doses of her meds, and toward the afternoon she calmed down a bit.  But a rough night and morning.  Her vitals are fine: heart rate 130s, ET mid 30s, BP 91/59.

They always have to consider withdrawal as a cause of increased vomiting.  I guess they did a final step down on her Morphine, and she should (finally) be completely off of it in another 1-3 days.  This will be the first time in 3.5 months she's not on any narcotic pain reliever.  Very happy to get that out of her system (though she's still on a whole concoction of other meds).

Her blood counts are all good.  They say her white cells are actually high, but they don't believe it's due to infection (though they keep checking).  They expect she will do her next round of chemo next week.  It seems so soon... but they have to keep going.  I'm not sure if an MRI will happen between the two.  They generally going at least 2 cycles between scans.

I had an intro meeting with the PCU team today. Why we're here, what the goals are, etc.  And they were nice, but some things people said made me uncomfortable.  They reviewed her current medical status, and mentioned that Reed and I 'requested' to bring Julia home (we certainly didn't).  I told them I have no idea why we're in the PCU, and that it came on all of a sudden.  I asked if anyone on her team is like... confused, or intrigued, or shocked, or anything, at her seemingly miraculous turn-around.  They all seemed rather clueless honestly (they cared to find out, they just didn't have any info).  I reminded them they she was on hospice just 2 months ago... and now she's not... and no one is really saying much about what they think is going on.  Someone mentioned "quality of life" which is always a really horrible phrase to hear.  So I asked them if they believe they're sending Julia home to die.  Like... is the plan to get her out of the hospital "comfortably", with the expectation that she won't live long?  I told them I don't want to learn to care for a trach/vent if we're really just looking at a home hospice situation.

So they had our oncologist call me, since they just didn't know the answers.  I felt MUCH better after talking to Julia's doctor.  She said the PCU team doesn't know Julia, or where she was in January (outside of some case notes).  They see a very sick little girl, with a very difficult cancer... but they likely don't appreciate where she was and where she is now.  They likely don't know "how exceptionally well she's responding to chemo' (her words).  Our oncologist is THRILLED with Julia's progress.  She said she stopped in to see Julia last night and Julia was very engaged in her TV show (Peppa Pig!), Julia nodded yes and no to questions, and she waved goodbye when the doctor said she was leaving.  This is the first time our doctor saw this level of neurological (and physical) improvement in Julia, and she couldn't be more optimistic.  She said there are definitely no guarantees with such an awful cancer... but she is referring to Julia as currently "beating the odds" and she plans to run with it. So I felt a TON better after talking to her. 

So I agreed to some training.  We got trained on the vent - how to change out the tubing.  We both did it on a test machine, but then he suggested we try changing her tubing (not the trach, just the tubes attached to it).  So Reed did it, but that meant they had to disconnect Julia from the trach and attach her to a bag... that's hand pumped to make her breathe.  I watched this man squeeze the bag and Julia's chest would rise... and I nearly puked.  I NEVER want to have to have that much control over a life or death situation with her!  Julia was uncomfortable, but she tolerated it (she had no choice).  But then he asked if Reed wanted to try, and he said sure.  I had to leave the room.    ...She's still alive, so I assume it went well, but I just couldn't.  Maybe next time.

Ugh.  It makes me sick to my stomach just typing it.  This is going to be a major effort.  At the meeting, they assured me that I will be "a changed woman" before they discharge us... but I don't know.  

Oh!  And Kinley, Julia's 12 year old cousin (who Gabriel is living with), figured out what the "pointer finger up / "O" mouth" is!  Julia has been doing it for a few days, and I've just been really confused.  ...She's doing the "shhhh" expression!  She just isn't strong enough to bring her finger TO her mouth (and she can't make the noise) so it wasn't super obvious what she was doing, but Kinley caught it right away.  Julia would do it after she asked for Reed (by doing 'daddy finger'), and I would just say he's sleeping - so I thought she was then asking for mommy (by doing 'mommy finger') but was confused by the "O" mouth.  She was on FaceTime today and saw Gabriel sleeping, and immediately pointed her finger up and did the O.  Kinley saw it for what it was -- we asked Julia if she was saying "shhhh" because Gabriel was asleep, and she enthusiastically nodded 'yes'! I think she was so happy someone finally knew what she was doing <3 

And tonight I included a picture of her with her 4 BEST FRIENDS - Tiger, Hippo, Elephant, and Foxy.  She had all 4 with her at all times, and they've stayed by her side at the hospital. Today I was trying to figure out what she was pointing at, and she made it VERY CLEAR it was NOT her animal friends!  I don't like that she's frustrated with communication... but LOOK AT HER!  She can now purposefully grab things, and THROW THEM!!  I'll put a video in the comments <3


. . . ******************************** ********** 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 fundraisers:  T-shirts - | Jewelry: Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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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