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February 25, 2020

Late update.  Charlene rode with me to the hospital, and I just got back from dropping her off at home.

News isn't any better.  It's not worse, but that's not saying much.  We had our meeting with her primary and oncologist today, and it went exactly as expected.  Imaging shows tumors everywhere, where they weren't before.  No one really comes back from this level of disease - even if there were a miracle chemo... there has just been too much damage.  Well, they said no one comes back with medicine.  But they've seen crazier things happen.  

The official prognosis is days maybe weeks.  They say they hesitate to make a prediction because she proved them all wrong before, but we're significantly worse off than we were last year.  Last January we were dealing with a single tumor squeezing her brain stem (deadly still, but just the one).  Now it's... countless tumors.  All over her brain, all down her spine, and now, all over her internal organs and abdominal wall.   

They know we don't want to hear the word 'hospice', so they didn't bring it up.  We had the hard conversations though.  Seemingly for the hundredth time.  We will continue with the Mebendazole and third round of chemo (if she gets there), because everyone is in agreement that they are doing no harm, and causing her no unmanageable discomfort.

What will likely happen is, as she shows increased signs of pain, the meds will be upped to handle it (completely).  If and when we get to the point where her pain meds aren't enough, they will add additional medications to essentially knock her out.  Once she reaches this state, she will very likely never wake up again.  Ideally she will be in this unconscious, unaware, pain-free state if and when something catastrophic happens within her body.  

We've added a few more DNR-type measures.  But while she is awake, and able to smile, communicate, and watch TV, we are not going to take any action that will hasten her death. 


As far as symptoms, she's had quite a bit of spit up today. But I noticed the sump (tube from her nose) also was not sucking anything out.  Seemed like a coincidence.  The nurse said it was working fine, but later it was discovered to be clogged.  They got that unclogged and the spit-up/reflux stopped.  Also, they did not believe there was a clog in the abdominal drain, which had slowed down to about 20ml every two hours (150ml is the goal).  Reed requested they do the drain-o anyway, regardless of assumed lack of fluid / possible risks.  They did that and 150ml gushed out immediately.  Her BP dropped and they stabilized by stopping the drain and giving some fluids.  

So, nothing amazing with either of those, she's still riddled with cancer.  But both provided immediate comfort.


We spent a lot of time with her today.  Charlene lotioned up all her dry skin, and gave her a mani/pedi.  Julia watched us with her one eyeball, moved her mouth, and reacted to all the head pets.  Eventually we gave her some cartoons and her eye followed those just fine.

And, I guess as a side note... even the oncology team said that with Julia's recent "improvements", they even started hoping beyond reasonable hope that the chemo was working again.  They "knew better"... but her regained ability timing was certainly suspicious.  It's very clear they are disappointed and sad that it's not what we all thought we were witnessing.  Her oncologist even came to the meeting with the "Julia's Army" ID badge holder we gave her last week.


And just to save everyone the hassle, I feel compelled to address the 0.01% of Facebook followers who (wrongly) believe they know better than an entire medical team.  No one at CHOP believes she's suffering.  No one at CHOP, including hospice, is suggesting we "pull the plug".  No one at CHOP believes there is anything inhumane, unethical, or selfish with continuing mild chemo and basic interventions. 

If and when Julia experiences ANY pain, they will handle it, up to and including completely sedating her.  Like, brain surgery sedation.  She will not suffer while in the PICU.  She has central access, and they can knock her out cold in 20 seconds.  The cart with appropriate meds is literally stationed right outside her door.


I do have stuff for a video, but I wanted to get this up first.  So give me a few minutes to put it together and upload it.  Will be in comments. 





*********** ~~ 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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