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February 13, 2020

Early update.  Everything's fine - I'm just heading to Aunt Charlene's to see my little guy for Valentine's Day.  I'll be with Julia all day tomorrow, and I have some chocolate to share with Gabriel <3 I know people are waiting for oncology news, so I wanted to post early rather than super late.


No emergencies today, but lots of people in the room.  Constantly.  Lots of new people.  Julia is handing out actual mean faces now (which are still pretty adorable).  But she is so over being pestered today.  So there has been little alert time... mostly because when she's finally alone she just zonks out.

Oncology stopped by, and as one of Julia's pediatric oncology nurse followers suggested last night, Julia's team was concerned about the slow down in abdominal drainage yesterday.  The plan, up until that point, had been to start round two of chemo.  But then her drain started draining "a lot more slowly" and that raised some red flags.

As a reminder, she hasn't peed in quite some time (don't quote me, but ~2 weeks or so).  But the abdominal drain, which was originally put in to handle her massive swelling event in January, has sort of started acting like a lazy dialysis.  I'm not sure sure what's exactly going on with the biology there, but the drain is managing her fluid levels and electrolytes fine, so Julia not peeing isn't a huge concern.  But, when the drain drastically slowed down yesterday, they needed to figure out why before they added in chemo (that she might not be able to get out of her body).

So the goal today was to get the drain working again.  X-rays and ultrasounds showed no issues (not exactly sure what they were looking at other than placement).  So they tried a sort of anti-coagulant/Drain-o to see if there was a clog.  And there was.  Ten minutes later the flood gates opened.

They are watching her vitals closely, and draining as much as her body will tolerate.  So far her blood pressure is stable (80s/40s) and her heart rate has actually come down quite a bit.  Perhaps the increased pressure is what has affected her heart rate the last few days.  It certainly explains why she started to swell up again over the last two days.

With the drain working again, chemo is scheduled to start tonight.  Which is a major relief.  Because yesterday, when no pre-chemo labs were being drawn, and the doctor saying oncology wanted to 'talk', I got scared that her kidneys might finally have shut down completely, and then chemo would no longer be an option.  


I haven't dreamt in a long time.  I think when all this cancer stuff started with my dad almost two years ago, that was the first part of my mind to peace out.  But last night I just had nightmare after nightmare.  The most grotesque and violent dreams, full of suffering and physical bodily destruction (seriously a meat grinder and chunks of flying flesh were involved at one point).  I woke up and was so sick to my stomach.  My initial thought was I was having fever dreams and was dying to Listeria (welcome to anxiety), but then I realized all I could think about was that we'd have to stop trying.  We'd finally be told her body could take nothing more, and that we'd have to sit by her side and just watch her die.  

I know there is an overwhelming likelihood that that is our reality soon.  But to lose hope and just wait for it, seems like the most... repulsive thing I could do as her mother.  I think that's the right word.  It doesn't seem to fit the context, but that's the best way I can describe it.  It's foul, and wrong, and revolting; it makes me want to throw up, and scream, and fight something off with teeth and claws and everything I have in me.  The feeling of giving up on my child, whether forced to or not, is perverse. Unnatural and disgusting.  My body wants to reject it completely.

So while I understand the statistics we're up against... just... thank God we can continue to try.  


And just noting that there is nothing wrong with her eye in the picture.  I realized when I put the collage together that the angle is funny and part of her trach tubing is sticking up in front of her eye. 

No video tonight. 




*********** ~~ Julia Adams ~~ ***********   

************* Official Links **************


Julia's official pages: 


Facebook: Julia's Fight Against Rare Cancer - Fund


Julia's official fundraisers: 

T-shirts: |


Car Magnet:

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 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here:

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Amy, I am with you on that! Fight every inch of the way, if she is comfortable. Obviously she is except when bothered by medical expertise hovering and doing "things". So glad she is giving them "the stinkeye" over it! Our little girl is still fighting!

Amy, you do not need to defend what you and your husband are choosing for your child - any right-thinking person would be doing the same. Many of us stand behind you in this fight and would not think of giving up as long as she is fighting, too.

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