new round. and MRI news.

so on tuesday morning, i got up early.

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 :)


and if you don't follow on FB, i now have a weekly blog spot "try it thursdays!" with Light Inspired! and this week, my post is about Finding the Light in Your Home! so check it out!! 

new chemo. round 1. part A1.

yesterday morning, i packed up everyone's stuff, dropped ASM off at my parents' house, and reese and i headed down to children's for the first in-patient stay for the new chemo.

the whole process takes forever.

you go and check in, fill out the same paperwork every time, get labs drawn. then go back and wait. you get into a room where they will, then, access her port. sometimes, she can just do port-drawn labs, but sometimes not - depending on what chemo day it is.

then we start fluids.

after that, you wait for a bed on the hemoc floor.

then you hustle your butt over there and do more tests.

one of the tests is a spec grav. yesterday, her spec grav wasnt "right" at first pee. so we had to wait until it was. which means chemo wasnt ordered until the evening. we didnt START chemo til about 8pm.

all day, reese was tired. we cuddled. she slept. we just hung out, quietly. she wasnt really acting like herself, but she's been up a LOT recently at home - so i figured she was catching up.



last night, we slept in the same bed and she just laid on my chest as cozy as could be. she didnt fuss for sodium draws, she just.... was cozy.

this morning, she puked. i had already had a neurosurgery consult come in yesterday and then they did rounds on her and checked her "squish" again this morning - where her last surgery was. after she puked, i was certain - that was it -- she had something wrong with her shunt. she puked again, they started zofran (and also the dex -- steroid -- in case she needed surgery). they sent us to ICU to be watched and ordered a CT scan.

her sodiums slowly dropped -- 128 - then down to 123. ugh. i couldnt remember if she had gotten her keppra (seizure meds) before or AFTER she puked the 2nd time so i just prayed she didnt seize. her HR went down into the 50-60's when sleeping - which is VERY low for her.

i had a NS come talk to me and she showed me that there's no fluid collecting in her brain - its puffy between the skin/skull, but thats it. she showed me scans - totally normal. she also showed me before and after resection... wow. its like... so much smaller. i am amazed. and blessed.

here was the problem: they have to pump reese with fluids bc of the chemo. that, alone, will jack with her sodium levels. THEN, she wasnt peeing out. so, she was just diluting it all in her body. we didnt give her the ddavp this morning so we just waited for her to pee - and finally she did. her sodiums went back to 128, 135... and so on. when they hit back at 128, she was a different kid. totally happy, laughing with nurses, being a jokester... everything.

EJ came up after work and then we moved *back* to the oncology floor - and he is there tonight. he brought the headbands (remember these? haha) for her to wear for compression on that squishy side.

its funny, though - an oncologist came in this morning to talk about possible shunt surgery and said "youre so calm!" and i guess i was -- but here's the thing. when you have already had 2 craniotomies where they cut out a piece of your child's skull, lived in ICU for weeks, in the hospital for more, had a chemo fail, been told that if you didnt do xyz, that itd be "too late" or that "youd have 2 months with reese left".... a shunt surgery does not scare me. its a means to an end at that point. am i glad that she didnt need it? of course. but anything to keep reese healthy is whats the foremost in my mind.

what scares me is if there wasnt a means to something. if they didnt know what was wrong. if they couldnt fix her. i hope to never ever feel that feeling [again]. that gut wrenching fear. to where you run to a toilet.

i am not "happy" about how things are - but generally, i am happy day to day. i have to be. i have to be calm and rational and let the meds, the doctors, God, everyone... work. i pray for peace - and God has, gracefully, grated me that for now.