i mean, early.
we had to be checked in for her MRI by 6:30am. since i didnt decide to plan ahead (lol), i had to pack everything up for my stay.
we check in, move right along - and MRI is at 7:30.
afterward, she has a rough wake up. they masked her, first and then gave her propofol to knock her out completely, but that gas makes her angry lol i wish they'd just do the propofol only - but every anesthesiologist has their own "way". some like tubes, some dont. some prefer different meds, whatever.
she was madddd at me when we didnt go straight to the car. we went to check in at chemo clinic - sigh. she ended up in a GREAT mood when the doctors were around so they got to see the funny [and bossy] reese that i see every day. when i was talking, she'd be like "mommy? 'top mommy!! 'top!!" meaning - hey quit talking lol
the oncologist gave us good news. the tumor is obviously smaller. and the "bright" spots on the MRI are not as bright anymore. how awesome is that?! :D
the "bad news" was that there was a bit of fluid in her head. remember, she has a shunt. so it can happen. made a bit of sense bc last week we took her up there to get sodiums drawn bc she just was not acting like herself. but then perked up right away so -- who knows if its related. long story short on that is that our neuro said she just wants to do an MRI in a month. they called today to give me the date and its the day BEFORE chemo - i think thats so we know if we need a new shunt... or a revision... or SOMETHING, they can do that.
i finally could breathe. when the nurse came in to tell me that the onc was looking at the MRI, i almost puked. i mean, reese has been acting so so awesome for so long. i would have imagined there would be regression if the tumor was growing - but still. one scan can change your life. and it has before. it broke our hearts into a million pieces. and the chance that it could again, is gut wrenching.
when they talked about the fluid, i kept thinking "thats okay. that seems totally fixable in comparison to anything else". i mean, she's had such massive brain surgery that while i know everything is so dangerous and scary - i was still on cloud 9 from the tumor update.
we waited in the little dr's office at the chemo clinic for a while waiting on a bed on D6. it seemed like hours (i actually think it might have been - we watching like 5 episodes of spongebob on netflix lol). but i was patient. i was happy. sitting in that boring office was the least i could do in exchange for such awesome news.
we headed to our room, started chemo. la dee da. she has a cough. a phlegm cough, though. so she just hacks shiz up and then gags. which doesnt help the nausea. slowly, though, she became more and more tired.
listen, i knew something was up. they thought she might have a UTI bc her spec gravs came back with some sort of bacteria. whatevs. that doesn't make her sleep the whole day. we were getting ready to leave at noon'ish, but then needed an actual pee sample (not from diaper). so we couldnt leave yet. i said i wanted one more sodium before we left.
I KNEW it would be low. when they came in, they said there was likely a mistake bc it was at 128 - and all her previous sodiums were fine. i said "this is how she acted the first time we did this chemo. and we ended up in ICU watching her bc of it. when her sodiums go down like that - she sleeps. when they creep back to mid 130's, she'll perk back." - but they insisted "likely mistake" based on her I/Os and stuff --- but of course, it came back next at 127.
outfit changes ^^^ due to puke.
so then we just had to wait. they gave her a saline solution with a tiny bit more sodium and dripped that for a bit and BAM. back up. and, of course, she's a different child today. hopefully she'll be out by this afternoon.
so now we have an MRI in a month, a shrinking tumor - aka a chemo cocktail that seems to be working, and a happy kid.
thank you for every prayer. God so so does listen. He hears us.
so now just some updates via IG (punkfictionv4) - soccer games, playtime at the house, etc :)