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January 16, 2019

Day 10 past terminal diagnosis, and Julia is still sleeping peacefully.  I'll post vitals since many of you appreciated those last time.  Heart rate is steady between 100-130. ET has actually lowered again to an average of 74 (which was not what doctors were expecting).  Blood pressure continues to slowly rise, most recent draw was 177/123.  Meds are the same.  She continues to open her left eye a little bit, and find Reed and cartoons.

We spoke with the oncologist on staff today about our desires for the MRI / treatment options.  I did NOT like this guy, and the whole interaction really put me in a bad mood the rest of the day.  Right from the start you could see him mentally rolling his eyes while we were talking.  As he sees it (my words, not his), the medical team is certain as to where Julia is headed - today, tomorrow, two weeks from now... there is only one way for this cancer to end, so what's the point of another MRI?  "Well, we always want to consider if the results of an MRI might persuade us into change our goals...".  Which he of course believes they won't.  Because she's dying and comfort care is all they're interested in doing.

I quickly became angry during the conversation.  I asked why we've been told there was this plan for treatment all along, including chemo and radiation, and then all of a sudden it's too late and there's nothing anyone can do.  He said this chordoma can't be treated.  Period.  That's news to us.  We knew it was a long shot... but 30% is 30%.  He said chemo isn't a viable treatment option and radiation isn't done on kids so small.  He said the damage to her brain stem is so severe, she would have no quality of life because it has already affected her vision, speech, and movement centers.  He says with how quickly the cancer is spreading, all chemo would do is introduce toxins into her system with no chance at any sort of reversal.  We've also learned that the cancer has already metastasized down her spine and there is even a secondary tumor (this is from last weeks MRI).  HOWEVER, this "there's no quality of life" is certainly different than "it would cause fatal swelling", and I'm not happy about that.  The decision to treat is ours, not theirs.  

Anyway.  Typing that is already making me annoyed again.  In the end, she's getting on the MRI schedule tomorrow and we will be approached with 'treatment options'.  And I made it clear I didn't like him and I wanted our other doctor back.

Reed and I are not sure if we will go forward with chemo.  This doctor might be a jerk, but we do understand his reasoning.  We don't want to prolong her life in this state, if there is really no chance at any sort of recovery.  But we want all options laid out for us.  I believe we will see what the MRI results show, and will likely call the doctor in Boston again for his opinion.

But we did ask this doctor when he thinks her time will be.  He said much as the other doctor said - it could be any time, it could be another week or two.  The problem with where this tumor is, is it might very well be a "straw that broke the camels back" scenario, rather than a slow decline.  At some point the growth/swelling will be just enough that the signals to breathe will stop being relayed between brain and body.  It's just hard to really know when that will be.


Very stressful day.  The initial shock of "she's dying" is wearing off, and more than a week of extreme anxiety is really taking it's toll.  I'm exhausted.  

I did want to say that I found a WHOLE BUNCH of messages in my "filtered messages" folder... I didn't even know that existed.  So there are a ton from you guys I totally unintentionally haven't read yet.  I read all your messages to her, but I don't always respond because I'm usually holding her hand or laying in bed, and typing with one hand on my phone is slow.  And if you have any questions, please tag me in the comment so I get the notification.  If not, I just read over your comments as I talk to her =) But I'm happy to answer questions - she's just got so many followers now it takes much longer to get to them.  So many people love this little princess <3 

Speaking of princesses.  A foundation reached out to us weeks ago and asked us to pick out a Disney princess dress.  I wanted Belle or even Cinderella because the gowns were so pretty.  Reed said Mulan.  I asked him why he didn't want a big fluffy gown for our pretty little girl.  He said because she's not a helpless princess...she's a warrior. 

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