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November 17. 2018

Updated: Dec 22, 2018

I have details from the surgery. I'm going to say the important stuff first, and then I'll give some specifics further down. Those specifics may be graphic/disturbing, so please don't read them if you REALLY don't want to know. But many people ask... so clearly there are those of you out there who want to know everything.

The important stuff: Julia is currently in critical care in the PICU (as expected). Reed is *very satisfied* with the level of care she is receiving. When we were in the PICU before for her biopsy, she had a single full time nurse (which was great!) But now she has like, an entire floor or nurses. People flood the room for every beep. There is a full conference for hand-off between shifts. No one is allowed to do anything alone - there are warning signs posted everywhere and there are backups to the backups.

She will be kept fully sedated until her surgery on Monday (this is different than what we expected - they will NOT be waking her up for neurological checks). In addition to her pain relief and other meds, they've added a paralytic so she can't move. She is in her halo, which they tighten as needed as her swelling goes down. It took a team of 6 people to tighten her halo, they are handling her with such gentle care. One person was there JUST to stare at the monitors while they did it.

We were not given a percentage, but we were told that the surgeons are "very happy" with how much tumor they were able to remove. They got the majority of it out, but did not even attempt to get all of it. They confirmed it had permeated into the nerve area, and they were not going to attempt to touch that, as very bad things can happen. So there IS still tumor left - that's what we hope the chemo, and possibly radiation, can handle. She did have her 24 hour follow-up MRI and they confirmed the majority of it has been removed, and what is left, is what they expected to remain, and there are currently no issues (such as excess bleeding).

They ended up going through the back of her mouth to access the tumor. She will have scarring in several locations on her body (details below). The surgery went as expected. She did require a transfusion, but again, expected. Her vitals were PERFECT during the surgery - her little body tolerated everything beautifully.

As far as when she will wake up - they are currently estimating Wednesday. The tough part is that she is a young toddler... and no one can explain what a halo is or why she's in so much pain. So they want to try to get some of the worst part of the pain over with, and then slowly wake her up (with heavy painkillers), and ease her back into reality, with this very new sensation of a thing bolted to her head.

It will take her many weeks to heal from these two surgeries, and chemo will start as soon as she's healed enough. Last we heard they expect the halo to remain on for 4-6 weeks. I'm making an assumption that she will remain in the hospital for those 4-6 weeks.

So that's all the critical information. I'm going to give details on the surgery for those who want them.




I believe many people would consider them graphic and maybe disturbing, so don't read if you don't want to know. You're not missing out on any important info.


There is a picture in the comments


I'm serious... turn back now.




I'll give specifics without getting overly graphic. For her surgery a plastic surgeon was consulted, as they were not sure the best way to access the tumor. Through the back of the mouth was optimal, but in case that couldn't happen, they would have had to split apart her jaw (from mouth down to chin). That is what the plastic surgeon was on hand for. THANKFULLY that did not have to happen. They ended up splitting the "soft pallet" area at the back of her throat. In order to get the visibility required, they used a device that severely compressed the tongue (for 12 hours). Due to this, Julia is experiencing an *extremely* swollen tongue and mouth (so much that it bulges out of her mouth and wraps around the breathing tube - it is worse today than yesterday, which is as expected). The swelling is so severe, that should the breathing tube get dislodged, they would be unable to get another down there and she would suffocate because there is zero available airway. She is under critical care with many warning signs for this reason. In order to prevent the possibility of the breathing tube getting moved, they have physically sutured it to her mouth and chin. It is so thoroughly fastened, that in order to avoid permanent damage to her lips, they come in regularly and move the position of her lips around the tube. It is possible this could result in some physical scarring, but they are doing everything they can to avoid that. They also had to do several "fat grafts" to repair the area of her throat they cut into and the tumor area (they removed mass so they had to re-form the back of the mouth). They prefer to take fat from the belly, which they did, but because she's lost so much weight they could not get enough, so they also had to take fat from her thigh. She will have scarring in both of these locations. She will also have small scars from where the halo is attached (she has 8 carbon fiber screws drilled into her skull to secure the halo and a connected chest apparatus that constrains the head and body movement). They had to use a stiff scope up her nose for the surgery, so her nose continues to regularly bleed from the irritation, but it will heal up just fine (it's just alarming to see her nose bleed while under these conditions).

... Not sure even how to end this update. So that's all I have.

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