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December 15, 2018 - Part 2

Updated: Dec 23, 2018

*** Happier update! ***


I posted earlier today, so please read that one if you haven't. I didn't want to just comment on it and have people miss anything. We have results back from Julia's MRI. The universe must have realized I'm about to literally explode from stress because we finally have decent news.


- The shunt is successfully relieving the pressure in her brain. It continues to work. Reed watches it "drip brain juice". Her eyes are starting to respond again as expected.

- They do not believe there has been any permanent brain damage from the "massive swelling event". The surgeon did find superficial damage to the ventricles, but he believes it is minor and will heal over time (I don't actually know what I'm talking about, I'm just repeating what I was told).

- She does have an infection, which they are still waiting for results regarding, but they are confident they caught it early and can treat it.

- The fusion of her spine is already visibly healing. No one is jumping to conclusions, but they said if her bones continue to heal as nicely as they are already, she might not need the halo for the full 3 months.


And most importantly, this is the first time they've looked at her cancer in a month. There has been ABSOLUTELY NO GROWTH!! In fact, it is LESS THAN they thought it was before! There is a small chance the chemo has had effect, but it's more likely that what they thought was cancer was actually blood, and they just got a more clear MRI image this time around. Either way - they called this cancer currently STABLE, and there is less than they thought. Less to fight with chemo and radiation!


Our surgeon was shocked. He said he always expects to have to recommend more surgery when following-up to this cancer; it's that aggressive. He described the last one he saw as "a weekly effort to cut out the new growth". He can't explain why it hasn't advanced.


***


So I guess what happened is last night she was extremely tired and started to be less responsive. It was enough that several doctors were called in throughout the night to give their opinions, but nothing was conclusive. Sometime in the early morning she started failing her neurological checks - her eyes were dilated differently and she became completely unresponsive to touch.


The shunt procedure was done by a surgeon who has worked on her several times, and Reed said he apologized... having to do this surgery on Julia just got to him. He just feels so bad for everything she is going through, and that she keeps having all these rare complications.


The shunt is about the diameter of an IV, and the incision is about 2.5-3 inches long, on the top of her head. Reed didn't send me a picture because he says it's kind of gory and I won't want to see it right now. It will remain in as long as she has a pressure issue; possibly for as long as they're fighting the infection.


She is still heavily sedated from the MRI, but they're lowering her settings every hour or two to get her to where they want her. They want her to be able to respond correctly to their checks, and start moving her arms and legs again. They will be controlling the pain from all her new procedures, but they do need to get her more awake.


So right now... things are definitely better than they could have been, considering. Her cancer is in a very small location, and if it grows out of control there will be very serious problems. But I am gladly accepting the current "unusual" stability of her cancer. It's a sigh of relief, even if just for a night.




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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!