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March 2, 2019

Not a lot of news for Julia today.  I have a horrible cold, and haven't gone down to see her.  I assume it's from her fundraiser last weekend, as many of us are sick now, including little guy =( 

But she's had a fine day, and is still on track for her MRI on Monday or Tuesday.  She slept almost the whole day - she's just exhausted.  I'm so relieved there have been no complications so far.  Our oncologist really stressed the complication rate of 85%+ for this more-intense chemo.  With Julia's history of "everything that can go wrong, does", I was kind of just accepting that she'd have to suffer through every possible complication.  But so far, she's really handled it well.  No complications, and few side effects.

The plan is one more round of this same chemo (to start sometime next week, assuming MRI is as expected).  And then... who knows.  We haven't really talked about what it looks like going forward, as we weren't even expected to get this far!  I know that for her type of cancer, surgery and then radiation are the optimal treatments.  But they really really really try to avoid doing radiation on a brain stem, especially in a 2 year old.  So if I'm making correct assumptions, they will likely do chemo for as long as possible, and try to push of radiation until she's 3+.  They may possibly put her on a much milder chemo for the remainder of the year, and just see if they can hold the growth steady until she's a candidate for further treatment.  But I'm really just assuming.  I believe the official plan is to do the 3 rounds of chemo, and then do another full-body workup and go from there.

And since I have limited news today (no news is good news though!), I wanted to mention her trach.  I read lots of questions asking if it's permanent; and the short answer is, it shouldn't be.  But she will likely have it for a while.

Many people get a trach because they have an actual breathing problem due to obstruction, illness, organ damage, etc.  Julia had a weakness problem -- she was too weak from all the sedation and surgeries to effectively cough of all the secretions (caused by being intubated [breathing tube] and several infections).  They did try to remove the breathing tube, as scheduled, but after 2 days of trying to breathe on her own, her oxygen saturation just continued to drop, and they weren't happy with it.  So they had no choice but to intubate her again.  And when someone is intubated, they need to be kept pretty sedated (not completely, but a lot), because it's super uncomfortable -- not even an adult would tolerate a breathing tube very well.  And being intubated/sedated again caused a downward spiral: she had to sedated for the breathing tube, but she was growing weaker due to being sedated, but she had to get STRONGER in order to not need the breathing tube...

So they made the decision to give her the trach, which allowed her to come off the breathing tube / off the sedation / wake up / regain strength / start chemo.  Once she was doing a bit better, they decided to keep the trach in "just in case".  She still had the halo brace on, and they could not fit a normal oxygen mask on her head should she need emergency assistance.  So it was just safer to keep the access via trach.  My understanding was it would possibly come out once they removed the halo.

But right around the time the halo came off, her situation got real bad real fast, and she required almost full vent support.  Since then, she's continued to need vent support even though she's been improving.  So for the foreseeable future, I believe the trach will stay in just due to her weakened state and her history of needing assistance.  Also with being on chemo and having essentially no immune system, they REALLY want to avoid having to intubate her because that foreign body is a huge infection risk.  And infection is bad!  But "someday" it should be able to come out, as nothing is actually damaged. 

Right now, she's down to no oxygen support, and no additional vent-powered breaths.  I believe she's only getting a little pressure assistance every time the machine detects that she's taking a breath.  For the last week or so, they've been doing 4 hour stretches a day where they completely turn off all vent support.  And she's done great, even being super weak from chemo =) I think they're heading toward being able to cap the trach for all or part of the day.  Once the trach is capped, I believe a cuff can be deflated, and she could possibly learn to talk around the trach (I believe the cuff is something that sits just above the.... trach hole (technical term), and prevents her from aspirating like if she throws up, but it also prevents air from passing so she can't talk -- some trach expert correct me if I'm wrong on that!)

[Edit: I'm close, but not exactly right on the trach details, mostly regarding the cuff. I give myself 5 effort points.]

So, that's my assumptions on her trach.  It's likely not permanent, but will probably be in for the foreseeable future.   

And someone asked for some Julia and Gabriel pictures, so I thought that was a nice idea today instead of just sleeping beauty =) They are 11 months apart, and she LOVES HER BABY BROTHER SO MUCH!!  He had JUST learned to walk a few weeks before she went into the hospital, so other than through FaceTime, she really doesn't know all of the new toddler stuff he does. I can't wait for her to be able to play with him again.  She was always touching him, and poking him... and sitting on him.  Lots of sitting on him.  But she's a great big sister <3 <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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