January 20, 2019
Vitals: Heart rate in the 120s; ET a bit worse today, in the low-mid 80s; BP 170-124. She's only opened her left eye twice today, and didn't focus on anything. We gave her cartoons but she didn't even stay with us long enough to watch. Her left eye is starting to not respond to neurological checks as well. The pupil still shrinks... but noticeably slower. (The right eye hasn't responded at all in weeks, and the pupil remains fully dilated - now they just look under the lid to make sure there are no visible changes.)
It is so sad to see our daughter slowly fade away. She lost her ability to talk when the trach was put in; then over two weeks she lost the ability to move her body - starting with the stroke then progressed with the cancer; and now she seems to be losing the last of her sight. I can't believe just three months ago she was bouncing around asking for Peppermint Patties.
I do not like the one doctor there, the same one who was a jerk last week. Reed had a very hard time getting them to agree on action today. He (and the team with him) really just seemed kind of OK to "pass the buck" while Julia lays there dying. Reed asked what needed to happen to get something moving - for any action to be taken - and they just kind of did nothing but give excuses and suggested he call our other doctor who isn't there right now. I can't believe this guy holds the lives of children in his hands.
I called OUR oncologist, and she was much more receptive to our desire to try something, now that Julia has surpassed her "days to live" sentence. She had reviewed her most recent MRI and had been looking into the medications we asked about. A few are not viable because Julia's tumor does not have certain mutations. But one is viable, and it's one of the ones she originally wanted to start her on (this is one of the drugs mentioned by the New Zealand family). I expressed how unhappy we are at the constant delays. Our doctor said administering this medication during an active brain infection, or during her strokes, would have likely been fatal. And then the cancer seemed to not be growing... so they thought giving Julia a week to heal was reasonable. She repeated what we've heard all along - that Julia has faced complication after complication, and absolutely nothing about her situation has been normal, right down to the extremely rare cancer. We very much like this doctor, and we do believe she cares about Julia and wants to try... regardless of how much of a long shot it is.
Even with the alternative treatments we're doing, the tumor is still advancing. Regardless of how much I want to believe in these options, they're just not enough against her aggressive cancer this late in the game. Most tumors have leeway with their location. They can be let to swell and advance, while medication combos are played with and options are tried. That's not the case when it's wrapped around a brain stem. We will keep administering them though, with an increase in dose.
We agreed with our oncologist that tomorrow Julia will get a full work-up done: labs, scans, etc., to get a starting point for the chemo. Her chemo will (finally) start first thing Tuesday. This is a very hard hitting chemo. It's a 5 day infusion, with some sort of "healing booster" on the 6th day. Likelihood of complications are high. 85%. These include infections and low blood counts (requiring transfusions).
We don't like those numbers... but we're out of options. We can physically see Julia dying. She's survived infections and strokes already... we are hoping she can fight through this. We want her to hold on long enough to give the chemo a chance to shrink something. This is the drug that has worked miracles in both the families who contacted us. I'm just afraid we're too late.