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December 31, 2018

We have the results from Julia's MRI today. You know it's not good news when the social workers accompany the doctors. I'll start with the bad and get it out of the way.


Her cancer has grown, and it is now a concern. They did not give us a percent or growth rate, but they've seen growth in the past two weeks and that's never what you want to hear. They believe it is starting to press on some nerves that control things like heart rate / blood pressure, and they believe that is what's been causing her spikes. They will begin aggressive chemo next week. A full treatment plan is forthcoming.


With new images, they've determined that her stroke was worse than they originally thought. Her speech won't be affected, but they expect her to have significant motor issues. They believe she will walk again. They had no comments on her vision. It was a quick conversation, so there was not a lot of detail. They say she's still young, and can still possibly see a lot of improvement through PT.


It looks like the infection is gone. They are doing final saliva tests to make sure there is no traces of brain fluid in her mouth (suggesting a leak). They expect those to come back clean. They will be removing her brain shunt and installing a permanent(?) interior shunt. Something that can be closed off when not needed. I believe this is more of a "just in case" scenario due to the location of the tumor. They want quick access should swelling happen again. They want to get the surgery out of the way now, so she has time to heal with a decent immune system. The chemo treatment is being held off for this healing process. They don't believe a one week delay will be detrimental.


They will be removing the halo at the same time. I should be excited about that, but it's over-shadowed by the other news. That procedure will be in the next few days.


I told myself I wouldn't get my hopes up for a miracle with the news that her cancer was 'shocking' doctors by not growing... but apparently I did. And I know that due to how disappointed and sad I am right now. I feel like this is just a repeat of my dad, and I'm having a hard time not thinking "what's the point" when they talk about possible improvements from long-term physical therapy.


It looks like she's going to have to fight this the hard way... hopefully all her awful luck with 'rare' complications has passed, and treatment starts going as expected.


Here is a picture of her limited PT session today. She was still coming out of anesthesia from the MRI, so she pretty much just got sat up and fell asleep.




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!