June 20, 2019
Initial MRI results came back. As far as they can tell, there has been no change. So, it doesn't appear to have shrunk, which isn't what anyone was hoping to hear, but it also didn't grow. A few notes from the review:
--- They are 100% confident there has been absolutely no growth or spreading at all (which is fantastic... especially since the growth was "out of control" in January).
--- There is NO pressure on her brain stem anymore (confirming what they thought at last MRI).
--- They can't tell if it's still... active. Like, they can't tell if these cells are still attempting to divide at a rapid rate, or if it's just kind of dead tissue (which would be totally acceptable). They just mentioned that as an option. I guess when an MRI is identical, they wonder if we're killing it off at the exact same rate it's rapidly growing... or if it's just dead and not getting bigger and chemo is useless. Both are options, and they're not leaning one way or another at this point.
--- They reminded us that this cancer doesn't "melt away" under chemo (if it's affected by chemo at all, which it usually isn't). So a slow response is not concerning.
--- No one on her team is unhappy in any way with these results.
--- Infectious disease confirmed there is no exchange between her throat and her brain anymore (from the surgical sites), and has declared there is no more infection risk. So they will recommend that she start to wean off the preventative antibiotics.
--- These were just initial imaging results. All her teams will meet over the next few days and discuss the next course of action (such as continuing the same chemo / trying a different chemo / backing off on chemo to give her a break and see what the cancer does, etc.) We should know in a few days.
--- It should be noted that there was also no visible change between MRIs #2 and #3, but then there was a sizable reduction with the next. So this could just be the non-linear course this cancer is taking.
So that's that. Not what I was hoping for, but not bad in any way. 'Stable' is totally acceptable in the aggressive cancer world.
And... listen. We had the absolute grumpiest, angriest, most unhappy-miserable toddler in the whole world today. She was AWFUL. Even REED said she was awful! She was sooooo tired, and she refused to sleep for more than 5 minutes. Her sleep at the end of the day yesterday was anesthesia sleep, which is not restful. And she's been up since! Pretty much all night, and all morning, and by afternoon BOY was she a nightmare. She was kicking, and screaming, and scratching. The nurses started wearing the coats in just to not get scratched =( They could hear her screaming down the hall! I mean... really good for vocalizing around the trach, but definitely not the conditions I want it under. PT and speech stopped by but they didn't even bother.
By the time I got there with Reed's dinner with plans to hang out for the evening, she had JUST fallen asleep, and Reed said we should just leave. They had all the lights off, and her vitals were nice and low, suggesting a deep sleep. Her oxygen saturation was dipping, but they think that was just due to sheer exhaustion. They don't think she was in pain, though they did give her painkillers just in case (it didn't help). Through all the yelling she was constantly rubbing her eyes. So I think we're just dealing with a case of... a toddler refusing to sleep.
So now Reed and I are home, and I'm sure Julia will get a good night sleep and be back to her happy self tomorrow.
Honorary grump-picture included tonight. This is from last October. And Reed had texted me this 15 second video (in comments) this afternoon -- she had just finished tantrum 4 of 10 and had exhausted herself into a 5 minute nap. And to end things on a more light-hearted note, I added a clip from last June. You can see her adorable "I'm on a mission" waddle. She was picking up cat food and putting them in the windowsill. (??)
. ******** ~~ Julia Adams ~~ ******** ********** Official Links *********** (These are here because of scammers) ********************************
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Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3