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November 11, 2018

No major information to share. We're still waiting to hear if they will perform any surgery or not. She has the whole day Friday booked just in case they go for it. They only won't do it if it's just too dangerous, mostly due to the location involving her throat (and it would have to be REALLY dangerous, as not doing it drops her survival chances to nearly nothing).

Tomorrow Julia has a full body CT scan to see if the cancer is anywhere else. She's also getting a catheter for 24 hours to check her liver functions. They are not putting the port in her chest tomorrow; they will do that before her surgery. Her hearing so far is OK... as much as they could tell by her total noncooperation. And we go to an oncology consultation next week to learn all about what to expect and how to care for her immune system during the next 6 months.

She is acting like a normal toddler - mostly coloring, playing with play dough, and watching cartoons. She hates all the nurses, but mostly because they have to poke at her IV and shine a light in her eyes. She's gotten pretty used to the other vital checks. She refuses to leave her daddy and sits on his lap every waking minute of the day. We're hoping this is a SHORT TERM requirement, up until she's home from surgery and begins her treatment.

... But seeing her after 48 hours of being away, she doesn't look good =( She's very pale and sweaty. She is clearly very sick. Luckily she doesn't seem to be affected by it other than being tired and a little cranky, but I hate seeing her look so ill. The nurses assured me they are checking everything and she's still stable (temperate, blood pressure, neuro checks, etc.) But as much as I dread seeing her go through chemo... I just want it to START. I want something to be done to fight this. I hate knowing it's still growing unchecked inside her head.

I shared my father's obituary today. His visitation is this Friday from 1-3 in West Chester. Please let me know if you need any of that info.

And guys... I'm blown away by the response to the GoFundMe set up in Julia's name. Wow. As soon as Reed and I found out how bad it was, we were in our bank accounts trying to figure out how long we could go if one or both of us had to stop working. I've never been so stressed. I can't even believe the generosity we're seeing from our friends and family. On top of that, Julia continues to receive toys and stuffed animals at the hospital, and I'm getting cards and flowers sent to the house. I leave the hospital late every night to repeat the lonely drive home, and almost every night I've walked up to my dark house to a package or flowers on the stoop. These gestures have meant so much, you don't even know.

The back to back news of my father and my daughter has certainly put my mind in a very weird survival mode; to the point that I'm constantly getting reminders of my new reality all day long. When I saw so many generous donations my first thought was to call my dad and tell him... because I told him everything. And then just a little bit ago while I was working on the slideshow for his service, I thought to myself "I can get through his passing... look what a happy life he lived," and then I remember my daughter is now ALSO fighting cancer.

So with all that going on, I just want to say that I appreciate all your constant likes and comments and shares. I've followed the links to most of your posts on me behalf and I'm so happy to see so many people praying for Julia. I'm going to keep posting updates... I really hope that I'll have a non-depressing one to post someday soon!

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