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October 13, 2019

Julia has had a fine day =) She slept better last night, and took a good nap. Nothing medical to update - all vitals are great and no concerns such as fever. She also hasn't thrown up since yesterday morning, and even that was more likely just gagging. So here's to hoping her lasting vomiting was from that anti-fungal she was on for two weeks. A few days without barfing and they will re-evaluate her for a speaking valve! Neither Reed nor I went to the hospital today. Reed's much better, but still has a lingering headache and that awesome bark-cough you get. I'm pretty much in the thick of the cold right now, the nurse heard it immediately when I called to check on the patient <3 But the nurse and a medic took Julia for another stroller ride today! She said she was a bit cranky getting in her chair, but was quickly pointing at everything she passed. Then she got super comfortable and was already tuckered out and falling asleep by the end. They visited the gardens again and a cool display in the atrium. Her nurse got some pictures with Julia's iPad so we could see! Seriously... wherever we go for acute rehab have some major shoes to fill. Every CHOP nurse has been fantastic. She has been well-behaved and engaged with all her caregivers. Last I checked in, she was happily channel surfing with Peppa on in the background. We'll likely keep Reed away for at least tomorrow, and then he can get back down to her on Tuesday if he's better =) ~~~~ And to answer a question I've seen a lot recently: her being finished chemo / getting her port removed does not mean she's cancer-free. It just means she can't take anymore chemo. According to all scans, the tumor hasn't moved in months, suggesting it might be dead, but we don't know that or certain. A more conclusive biopsy comes with risks. So the plan is to look again 3 months post-treatment and see what happens. It's very possible the tumor starts to grow again, which of course would be very bad as we have limited medical options left to us (and that would suggest the alternatives aren't working). Seeing growth at the first post-treatment scan absolutely does happen, so it's certainly an outcome we need to be aware of. Between now and then, everyone will watch Julia closely, and hopefully not observe any neurological warning signs. But it would need to be many YEARS of no growth on this tumor for anyone to even entertain the idea of 'cancer-free' (if they even do that anymore). As far as time schedule, last I heard her oncology team would like her at CHOP until at least the end of October, which is ~2.5 weeks away. I believe they are going to see how she does this week on therapy, and if she continues to be engaged and productive, they will send her current report to DuPont for review. If everything goes well... she could have a new home in just a few weeks! I feel so safe at CHOP, and I honestly don't want her to leave... but CHOP can't rehab her with her vent and she's not quite ready to be off it yet. And we need some acute rehab for this chunky pumpkin! ~~~~ Pix tonight from her stroller ride, and I don't have a current video, so I put together 2: one from last October, and one from last-last October <3 In comments.

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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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Wendy Lynn Nelson
Wendy Lynn Nelson
14 oct. 2019

i just don't get it. they are doing rehab with her now with the trach. so why can't they do extensive rehab there if she still has the trach? it doesn't make any sense to me

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