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March 4, 2019

No MRI today.

Augh. I want to know but I don't want to know. I'm hopeful but I'm so anxious. She's CLEARLY showing physical improvements, and every doctor says this doesn't happen when advanced cancer continues to progress... But I'M SO NERVOUS. I want to see improvement so bad. I will take fractions of millimeters of improvement. I will even accept no change. I just don't want growth.

I think I was just talking to our nutritionist about it... but I have such a hard time staying hopeful, because every experience I've had with medical issues has been perfectly in line with worst-case statistics. My first two pregnancies had concerns, but, "Don't worry, you're probably fine"... (It wasn't fine; and both concerns, however rare, turned out to be accurate - ectopic [that ruptured], and missed miscarriage). And the two recent cancer deaths - they both lived exactly as long as the statistically predicted life expectancy. One did no treatment, one did every treatment. Didn't matter. And even with my cat... she was struggling to breathe and I was hoping and praying it wasn't a big deal and they'd send her home with me. Nope. Worse case. Every time.

And all of this 'medical trauma' has been within the last 4 years, so it's super fresh. I JUST did this with my dad over the summer... he had a hundred MRIs, and each MRI was worse than the one before. I'm so traumatized by MRIs (no joke) that I won't even look at them. I've not looked at a single one of Julia's MRIs. I won't even Google a stranger's MRI! To me that black and white image of a brain is just a visual death sentence. I still don't think it's registered that Julia's last MRI *DID* show improvement. I feel like... they read the wrong one or something. Or that this cancer just behaves like that - it shrinks on its own and then takes over (which isn't even a real thing...) It just doesn't seem real.

I just don't personally know anyone who has beat the odds.

And Julia doesn't have to simply "beat the odds"... she has to come back from the brink of death. And if you've been following for a while, you know that's not even me being dramatic! This cancer, that is so rare we don't even know how to fight it, had almost killed her. This sort of miracle, like... stump-the-doctors miracle, doesn't happen in my life. Or the lives of anyone I personally know.

So I'm trying to keep the faith, it's just HARD.

I know this is the scanxiety talking. Augh. It's real guys.

But today Julia has been pretty comfortable. Very tired. Her vitals have been fine, but she's still been throwing up a bit. They notice it more after her meds and her cough assist treatment, so they're just trying to keep her extra comfortable when that happens. I have bags of her stuff at home now that all need to be washed - I think she's puked on pretty much every nice blanket and stuffed animal she has.

She's continuing all her new movements, and even the nurse has seen her try to open her right eye a bit =) So it's more than just one instance in a picture! The nurse said they believe they MIGHT also be detecting a little bit of movement from the actual eyeball now. Which would be AMAZING. No one is sure, but I've not personally seen a twitch out of it, so someone seeing something is just awesome. But either way, she's definitely trying to use it again!

Her MRI is currently scheduled for tomorrow at 11:30, but she could get bumped for an emergency. She's going to have general anesthesia, rather than light sedation. The scan is of her whole brain and spine, so it's a several hour test. She'll probably sleep for most of the day and I don't expect to get much out of her physically.

Sometimes we get results the same day, especially with an earlier scan... but not always. It could be Wednesday before we hear anything.

I'm just SO NERVOUS. I just have to not think about it.

So I'm not going to talk about it anymore. Starting now!



I'm still thinking about it.




OK. I'm just going to post this and be done with it.

I picked a picture today of her in all of her braces. These prevent the hands and feet from just flopping around all day, which can be a real problem after an extended period of bed rest. They are currently 2 hours on / 2 hours off, around the clock. Her left hand brace is kept on for a little bit longer, I believe because of stroke damage to that arm.

And while I was sorting through pictures, I found this one of the night after she was admitted to the hospital. I've wanted to share it before... but I kept passing over it. I just think the love it shows is so real... so relatable. That's her dad, aunt, uncle, and baby brother all passed out -- It's like, 4am and we had all been up for well over a day, waiting to hear what the mass on her brain was. No one was willing to leave the room until we knew. I don't know why, but I just think it's sweet, despite the sad circumstances.


... and I'm still thinking about the MRI. I'm praying for good news to share with you all tomorrow <3 <3 <3





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Wendy Lynn Nelson
Wendy Lynn Nelson
Mar 05, 2019

Hang in there Amy! Julia's hanging on and fighting she needs you to do the same. God has you all in His hands. Maybe those other things were to prepare you how to fight as Julia's advocate. Not trying to minimize anything, but as long as that little warrior is fighting then you need to do everything you can to hang in with her, including facing those demons of the past. I love you & your family with all my heart!

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