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June 11, 2019

Julia's entering the roughest part of chemo.  Her levels are starting to drop over the next few days, and then she'll spend several days at 0s, and then they should start coming back up (that's red blood cells / white blood cells / plasma).  During this stage she's super tired and in general likely feels pretty miserable.  She's also the most susceptible to infections and health issues.   So far she has done absolutely as wonderfully as possible as far as complications are concerned.  

So she's very tired, and goes through bouts of being sound asleep and long stretches of being awake and pretty grouchy.  We expect this grouch period to last for up to a week.  She had one big throw up today (Peppa casualty), but they gave her extra meds and she's been fine since.

As far as we know, her next MRI is scheduled for when she recovers from this chemo - so possibly as early as next week!  This will be 3 rounds since her last MRI.  They of course will be checking the status of the cancer, see how her stroke damage is healing, and make sure everything is as-expected with her spinal fusion and her shunt. 

Right now Peppa just came on (9:30) and she insisted that Reed sit next to her on the bed and hold her hand while she watches it.  He usually sits in his chair beside her, but that's no longer good enough!  Julia wants IN-BED cuddle TV time <3  Oh, and she stared kissing her own hand and then putting it on things, like Reed's face or her puppy <3

As far as some physical improvements - her right foot has joined the battle during her trach/string changes.  It already takes an extra person to keep her arms pinned down, but now that right foot is swinging around and she has a toddler's flexibility... so it's right up near her face.  She's also figured out how to disconnect her trach!  She pops the tubing right off, and seems to think it's pretty funny when the alarms go off, and she gets all that immediate attention.  I told Reed we should have gotten her a little bell... we might have waited too long so she's figured how to summon us on her own.

So, we're hoping that Julia keeps beating the odds and avoids any major complications (and this intense chemo has an 85% chance of serious complications, such as infections).   And we're hoping she just gets through these next few days without being super miserable.  

One of our new Facebook friends posted an AMAZING comparison in my video comment last night!  It's crazy to see the side-by-side from just 5 months ago!  So I grabbed a picture I hadn't shared from January, and recreated it with a screen-grab from yesterdays video (thank you for this great idea!)  As she points out, it's sometimes easy to forget how far Julia's come when we're seeing her daily progress <3 

Video of a very happy hardest-part-of-chemo baby!




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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: | Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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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