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July 26, 2019

Julia had an OK day.  Rough morning, but better afternoon.  She was pretty fussy early on with a fever of 100.5.  They gave her Tylenol and had a good nap, and she seemed to be feeling much better when she woke up.  The fever has been gone since.  Really hoping that stays away (is it a coincidence that it happened again the day Reed is home?)  Blood counts look good, except platelets, which they gave her this morning - they'll keep monitoring for the next week or so.  

OT and PT stopped by, but she was sleeping VERY soundly, so they decided to come back on Monday.  Good call. Oh, and last night the respiratory therapist thought it was ADORABLE how she one-arm pulls Reed in for kisses.  If Reed is anywhere near her face not paying attention, she just starts pecking him on the cheek and petting his beard.  She loves her daddy <3  

And Julia is 31.7 pounds.  She was 26 when we brought her to the hospital, and got as low as 20 during her coma.  So, she's plumping up real good!   ~~~~

Tonight was supposed to be Reed's evening with Gabriel, but Gabriel was up all night crying and now has a snotty nose (with photo evidence).  He's been with Charlene, so I guess he needs to stay there for a few more days.  She does a good job pumping him full with immunity-boosters, but that's the best she can do.  And Reed and I just stay away... for Julia's sake.  We avoided the play date this week "just in case" he caught something at the fundraiser, and it looks like that was the right choice.

So now I'm in this limbo.  Do I assume I already have it and spend time with Gabriel anyway?  Do I assume I haven't caught it and not go anywhere near him?  Am I safe enough to see Julia?  Do I have to spend another weekend avoiding both of my kids? And of course my anxiety is going crazy... did I use enough sanitizer?  I think I kissed her hand yesterday, did she put it in her mouth?  Did I kiss her cheek and she wiped it onto her lips while going after her snot?  Did I wash my hands after touching my hair?  I'm trying to replay Reed's interactions with Gabriel at dinner on Wednesday...  Did they share a fork or straws  Did he kiss him?  Was there snot exchanged in some fashion?  Do I quarantine Reed all weekend and force Julia to be alone?  How far do we go?

I feel like we "messed up" by seeing Gabriel for an hour at dinner.  You shouldn't have to regret spending time with your 1 year old, but that's our reality.  I can't believe one of my kids behaving like a normal kid can kill my other kid.  This is not the life I expected when I signed up to be a mom.   Ugh.  But the reality is... if Julia is fine then this is all fine.  I can handle this minor (in the grand scheme of things) disappointment.  So can Reed.  Julia gets to spend the night with her daddy now, so that's a plus.  Gabriel is totally happy, and loved, and entertained, so he's certainly not suffering.  And I'm sure I can make use of 'extra alone time' this weekend - I do have a million things to do.  So... trying to keep it in perspective.  As long as Julia doesn't get sick... everything is fine.  I think it's more of the anxiety right now knowing we may have put her at risk.

I've been told many times we can't keep her in a bubble, and that the long chemo process is all about being as safe as "reasonably possible".  But I've personally met families, right here on Facebook, due to Julia's journey, who have lost their children not to cancer, but to an infection while on chemo.  It really happens.  I know I can't protect her from every germ... but I'm having a hard time figuring out where to draw the line.  Does she NEED therapists coming in right now?  Does she NEED to go to the playroom? Does she NEED to see her baby brother?  Does Gabriel NEED to see his dad?  ...does Julia NEED to see me? How extreme is "reasonable" when it's literally your child's life on the line?

I want to say my only goal is "don't die", which makes me want to cut off everything until chemo is done.  What's a few more months of seclusion to 'ensure' a lifetime of relationships?  But... I'm also aware that her future is not guaranteed.  What if 2.5 months is all she has?  Do I take away her happiness, and distraction, and comfort, if her time here is limited?  Shouldn't I be filling her days with as much love and joy as possible?  Do I follow my head or my heart? 


Anyway, I wrote all that earlier.  As of 7:00, Reed's heading back down to the hospital, and I'm going to stay away from both kids at least until Sunday.  I think I'm going out tonight, since my kid options are limited, so I'm posting now.




. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

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

Julia's official 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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