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December 19, 2018

Late update today. Long day.


More mixed news, as seems to be her norm these days. I definitely misunderstood some of the talk regarding the "swelling event". It 100% led to a real stroke, as in brain deprived of oxygen. The damage was minimal, but when I first heard she'd recover as she gets better, I didn't realize we were possibly talking like... years. Julia DOES appear to have physical consequences from the stroke. The day following the stroke, her left arm was ice cold and completely motionless. At some point the whole arm turned bright pink and got hot, so they looked all over via ultrasound for a clot - they checked from her finger tips up to her ribs and neck and found nothing. The arm remained hot and pink for an hour or two, and then went back to normal. The doctors at rounds this morning said she has not been moving her arm at all. Reed and a nurse said that's incorrect - that they've seen her twitch her fingers. Reed even says she flipped her whole hand over to reach for his. The doctors seemed astonished (... I don't like that they are astonished that she moved her arm, I thought there was minimal damage!) Today during my visit, she was not moving her left arm, and it was very cold. I think I saw her middle finger twitch once, but it doesn't even lie in her normal relaxed position. Something is clearly wrong with it. At this point, I guess I just hope time and PT can do something... I can't believe she's dealing with stroke issues on top of a brain infection and cancer. I just don't get it.


I also don't like how her eyes look. Reed sees her all day every day, as do the nurses; I see her less often, so slow changes are much more noticeable to me. She blinks, and her pupils dilate appropriately to the flashlight, but they just aren't following us normally. She just didn't look at me once, but she's clearly awake. She's looking mostly straight ahead. They're not fixed in position, but the range of motion is like... 10%. The nurse says it could be due to all her body is going through and is not necessarily indicative of any sort of permanent damage. I guess I'll just take that and try not to obsess over it.


Something that came out of the doctor conference is that they are definitely not going to treat the blood clot in the vein to her brain (and it IS being referred to as a clot, not a clog... I don't know if medically there is a difference or if I'm inventing one. Clog sounded less scary than clot.) Their treatment for that includes blood thinners, which are too dangerous with all her recent surgeries. So the plan is to let those heal for another week and then reassess her whole situation. They are currently satisfied that the other major veins are compensating and she is getting appropriate blood flow to the brain; they also are not concerned that the clot will break off.


They have also decided against doubling the dose of the one antibiotic she was already on. V... micin, something. Like I posted before, her body is doing an "over awesome" job at filtering it out of her blood, so they'd have to really increase it to get enough to her brain. The concern is what would happen if her body stopped over-filtering, and just went to normal-filtering. The levels would be toxic. So they've stopped that one completely and switched her to two others that should do a good job fighting the infection. She'll be on them for 2 weeks. Her fevers seem to have gotten much more under control. The nurse said she hasn't had one in over a day.


She did visit the OR again today to re-adjust the shunt since the swelling has gone down. The surgeons said it was unremarkable and the procedure went perfectly. The pressure is still being managed and there are no concerns in that department. Since she was under general again, she was back on IV fluids instead of feeds, and she's all puffy around the face and eyes. Feeds just started as I left, but they were already hurting her belly. She's got so many meds being pumped in her system I'm not surprised food makes her stomach hurt. But hopefully things will calm down and she doesn't have to deal with a belly ache on top of everything.


And an... unexpected disturbance (to me) is watching her be upset with her new trach in. Since she is being weened off sedation, and doesn't have a breathing tube in for once in a long time, she is getting agitated. Which I know is a good sign... but she's making all the normal toddler upset faces (squinted eyes, mouth in a big O, red cheeks, etc.) but there is no sound at all coming out. Not even breathing. It's hard to watch her seemingly try to talk and yell while it's like she's living in a vacuum. It freaks me out, but I get freaked out easily. I just hope it's not scary for her =(


The only other bit of news is that Reed's since been visited by our neurosurgeon and three different oncologists... they are all completely stumped by her cancer's non-progression. They say it's not that it's growing slowly... it hasn't grown at all in a month. It makes no sense to them and it defies all expectations of this cancer. Not that they're making any suggestions, but they've mentioned wild, one-off case studies where a person had a cancer and a particular bacteria infection at the same time, and the bacteria appeared to eat the cancer for food. Again, they're not suggesting that's what's going on... just commenting on how NOT normal this is.


So with everything going on, and the very unfair amount of "rare" complications Julia continues to deal with, we are VERY HAPPY the cancer is not growing as expected. I hope to God this is a long-term abnormal growth pattern, but even if it's temporary, it's giving her the time she needs to fight off everything else. So we'll take it.


(The picture is Julia falling asleep to cartoons... I put them on as soon as I got there and she made it through one whole nursery rhyme before she was out. And the angle of the picture kind of makes it look like she has lost hair. She has not.)




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!