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September 28, 2019

Julia's had a decent day. No fever (honestly, at this point, that's really the only criteria). She's thrown up a few times, but nothing crazy. Got a few bonus baths and string changes, which she hated. She is REALLY fighting these basic procedures... 3 people are regularly needed now to get it done. No one thinks it's behavioral at this point. She's just had enough with being manhandled. Infectious disease has been involved with her blood infection, and they have a treatment plan in her notes. Targeted fungal meds, specific ones because she neutropenic (no/low white blood cells), they are taking daily cultures, and keeping an eye on her stats. As long as her heart rate is good, blood pressure is good, breathing is good, color is good, etc, they will continue to "treat through the line", rather than remove the chest port. If anything changes in her presentation, they will remove her port right away. The nurse explained chemo ports and infections are handled slightly differently in pediatric vs adult cases. They'd ideally like to keep the port in until she gets her MRI (which will determine if more chemo is recommenced [again, no one expects that]), but they will absolutely pull it out if anything at all changes. And apparently her last positive blood culture for the yeast infection was midnight of the 25th. So midnight of the 26th and 27th had negative cultures (that's GREAT news!!). They are running her treatment for two weeks, and will continue testing. But with her physical looks, lack of fevers, and negative cultures, everyone is hopeful the antibiotics took care of everything immediately. Her blood counts should also start to rise in the next day or so, which will only help. Ophthalmology is scheduled to come in this week. They will also check for yeast in the eyes (apparently that's a thing?) But they are checking her cranial nerve... I'm not super knowledgeable on the eye stuff... honestly it's been low on our list of our concerns since January Perhaps they've been checking the cranial nerve all along? But speaking of eyes... look at her look left!! As a reminder, a few days after we brought her to the hospital last Halloween, her eyes went all weird (had we not brought her in for her stiff neck, we would have brought her in for her eyes). We're not actually sure which eye was her 'good eye' in the picture below... they both seemed to be off. Her right eye tended to turn in, and her left eye could not cross center-line and look further to the left. But look at her go today!! This is all due to the tumor releasing its hold on her optic nerve =) Last checkup from the ophthalmologist last month had no procedures or anything to recommend - they were super happy with her natural progress =) ~~~~ Video in comments of some cuddles <3



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