Updated: Dec 22, 2018
So, first bit of news, is Julia's eyes are weird now. I walked in today and freaked the hell out because she looked at me with an unfocused, distant look and then went cross-eyed. Obviously I thought she was dying. And I think that's what I screamed to the nurses as I ran out of the room. Not my proudest moment.
They came in and looked at them, and they agreed they are being affected by her tumor. It is most likely starting to press on a nerve. So her right eye is starting to turn in (she can fix it on demand, seemingly), and the left eye can't look further left than 'center line'. So... clearly new symptoms. She also has a fever today which is new. And she is starting to hold her mouth crooked. Not sure if that's related but I assume it is.
She is seeing the optometrist tomorrow, but I can't imagine there will be any useful info - the neurosurgeon stopped by and was not surprised by her eye issue. He just nodded and said it's expected with the location of the tumor. But they ordered another CT scan just to make sure nothing has started bleeding or swelling in the last few days. That happened about an hour ago and we were assured someone would look at it tonight (if we don't hear anything, it likely means there was nothing serious). If something is found to be happening, they will of course do what is required, if that means something like immediate surgery.
She is still acting kind of OK. She's extra fussy today (perhaps from the visual issues), but definitely from having that catheter in all day. It was taken out around noon. But it's been another long day of being poked and having lights shined in her eyes, which she hates the most.
She has MANY big days ahead of her. Tomorrow she gets general anesthesia again and will get her chest port installed, along with a lumbar puncture for more testing.
Dr. Storm still said "surgery is expected to be Friday". So I'm not sure what, at this point, could change that. As far as I can tell, it sounds like the surgery is happening. He explained the normal risks. Their goal is to remove as much of the tumor as possible. He is positive he can remove a significant amount, but he's not sure if he can remove all of it (he doesn't believe he can, given that it has "punctured through into the dermal layer"). They always go in with a plan to remove it all, but it doesn't always work out once they are in there.
The surgery is a big deal. He said it will be long, but couldn't give specifics. I asked about timing since my dad's service is the same day, and he said it would go "well into the evening". They will end up scraping away a considerable amount of bone along her top few vertebrae because that's where the cancer is. She will be in a halo (those big neck braces that make her head totally immobile... actually bolted to her skull) for four to six WEEKS. This Monday, she will do a follow-up surgery "accessed from the back" to re-stabilize her neck due to the missing bone. They will fuse the top 2-4 vertebrae together. They like to just do the top 2 if at all possible, but he said in reality, in a toddler this young, they will have to do the top 4. This will render her head mostly immobile left and right. This will be permanent.
The neurosurgeon also said radiation will be required, which is new/different info than we got from the oncologist. But he said he didn't hear that for sure, he just assumed based on what he sees and what has been done in the past. He said whole brain radiation is not done on a toddler this young, but that 'focused photon radiation' is tolerated better, and would likely be required for part of the treatment. So it does look like radiation will happen at some point. The permanent defects I read about (vision loss, hearing loss, walking disabilities, etc.) are mostly caused by the radiation / less often but sometimes from the surgery itself. So of course that's scary.
So... tomorrow it's the port/lumbar puncture (we're hoping they both go as expected with none of the rare complications). Friday it's an all-day surgery with HOPES that they get as much tumor as possible without causing any permanent issues. Monday is another surgery to fuse her neck together. She will then recover in the hospital, and they will start chemo as soon as her body is able to handle it. We will learn more about exactly what her chemo schedule is and what to expect at our oncology conference next week.
(You can see her eyes here)