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January 27, 2019

Julia has finished her 5 days of chemo and 1 day 'healing booster' IV (to help regrow bone marrow / increase blood counts).  Normally at this point they just watch and wait for 3-4 weeks, doing regular lab work.  Once her blood counts rise to an appropriate level, the would do the chemo process over again.  That happens 3 times (or roughly 3 months).  Given her fragile situation, I don't know if they plan on expediting any part of the process.  We'll get more answers this week.  

Her vitals are as they've been recently: heart rate between 120-160.  ET low 60s, BP 127/90 at last check.  No fevers which is great!  Tomorrow I think they're going to look more into possibly needing a blood transfusion.  But she's really had an unremarkable day.  No movement out of her of course.  We've gotten lots of feedback that her 'sleepiness' could easily be from the chemo or even the RSO.  So we're hopeful that it's not necessarily from cancer progression.  Reed did say the nurse noted that her left pupil responded "slightly better" than the day before.  I don't want to read into that... but it's so hard not to.  I'm just really happy that it's not worse.  

I don't have much else to say in this update, because thankfully it was a quiet day.  We'd really really REALLY like to see her open that eye again sometime soon.  Many people have shared their chemo experiences and said they were just exhausted during treatment.  I'm not sure how long after the infusions someone normally starts feeling better, as in days or weeks (would love input if you have it).  But sometime in the near future we would just love to see that pretty little eye open on its own again.

In non-medial news, many people have asked about work.  Right now, Reed and I are in limbo, and it's very frustrating.  We are a two income family, and up until recently, we continued to work as much as possible; odd schedules / remote work when available.  When we were told she had days to live, of course we both stopped what we were doing and sat by her bedside. ... but it's been 3 weeks.  She's still here, her vitals are "stable" (for her), and she IS being treated.  We have no idea if she possibly has months+ to live, or if she's still in her finals days and the doctors are just humoring us with trying chemo.  So we're really torn on what we should do.  Reed has already used up all his vacation time for the entire year, and it's not even the end of January!  Having to make the decision to possibly go back to work is definitely an added layer of stress.  We just don't know what her health is going to do in the near future.  Anyway, we haven't made decisions yet, but it's been our main topic of conversation over the weekend.

Many people have asked what she was like right before we took her in... she was a normal happy kid.  I included some pictures today.  These were all taken in October.  We took her to the ER October 30th for a stiff neck.  We had no idea she was sick.  

And I mentioned it before, but please feel free to ask questions.  I won't be offended by anything, so if you're curious, go ahead and ask.  We're all in this journey together now. 

(And as a reminder: I'm maxed out on number of friends that Facebook will allow - so I'm not ignoring your requests, I just can't accept anymore =( We're a bit behind on messages, but we will get to them!  And if you've tagged me in anything and I haven't responded, it means I haven't seen it.  We really love all the support <3 <3 )

[Website only: These posts originally go to Facebook - the above makes more sense that way =) If you have Facebook, please feel free to follow on there! It's the same updates, but there is a lot more interaction. ]

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