a tiny bit.

this was a long weekend.

tuesday was our MRI. the MRI to tell us whether or not the chemo was working.

i get there and do labs at 10, get done with those quickly and then walk around with a very annoyed reese for 2 hours. normally when we go to the chemo clinic, we go and then we leave. this time we didn't. she was ticked. ;) so i had to keep pushing the stroller bc sitting meant her hollering for the car. finally she fell asleep.

our MRI was schedule at 1:20pm and we finally went in at 3pm. she had, again, fallen asleep on me while waiting.

it was a long MRI. at 5pm, they came out to tell me that her port "wasn't working" so they deaccessed and then reaccessed. and then they put an IV in her hand. so that took time -- but still too long, in my opinion.

we went home and waited. they said they'd call last night. but then again, that was when the MRI should have been over by 3pm. not started then. so i went to bed thinking "if it was horrible, they'd call, right?"

and i was right....

this morning i get a call from dr. b and he first said "well, id say its good news" :) he said, in multiple ways (ha), that "the swelling has obviously gone down from the previous MRI bc that was right after the 2nd resection. but still it looks as if the actual tumor mass was a tiny bit smaller".

which was MORE than i could have ever hoped for. all i wanted after the worst news of my life, that the tumor had grown and the previous chemo wasnt working... was to hear that it wasnt growing anymore. it being the same size would have made my day, but to say it was smaller?

unreal.

i was on cloud 9 the rest of the day.

its over 70deg here right now so my 2 best photographer friends and i went out to the park to snap some pics. i wanted to get pics of awesome reesey on this awesome day.



with her best friend... miller (or "niller" to reese)



we got some others of sawyer with her friend...



and then miller - and one with D lol showing personalities ;)


it was just a great day.

we were supposed to go to chemo today, but its just, bottom line, too full -- so we'll go tomorrow. we have a lot more chemo to go through. 17 more months, i believe? so i can't wait to get rid of this thing once and for all. keep the prayers coming :) God hears us.

here's a short IG (punkfictionv4) recap of the past week.

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.

miller is 4 months old.

this goes to show you how hard older kids are to shoot lol

i have like 20 pics here of miller and could barely get reese to hang out for 3 for her 2 year set ;) it always cycles that way. then at 3, it bounds back. but little miller i have captive to my camera until she crawls away... ;)

miller can't believe she's already 4 months!!

 

she's such a little love. sigh. ok lets go through the stats.

size: she is prob 10 lbs or so. she now fits into 3 month sleepers :)

 

her fave things: smiling with her sisters, "talking" to us, getting overly excited, taking baths, playing underneath her new play mat.
 

dislikes: pooping. or rather, having poop in her diaper. she ALL OF A SUDDEN will freak out and we'll know she pooped. lol she also hates being overtired and will make you *work* for that sleep. catching her before it hits that point is key. still. and she hates being on her belly.
 

she sleeps... okay. she sleeps wrapped with her hands up by her face. which is 100x better than pure swaddle. so we're working our way out ;) (how cute is her stretching?! swoon!)
 

she goes down early evening - like 630/7ish. if i have missed her sleeping window, it can take me 45mins to put her down. if hit it, right after she eats, she goes down no prob. she wakes up 1x at night - that can vary on time. then she's up at like 7am ish. if she is suuuuuper overtired at bedtime, im screwed at night. i just am. so i am being so diligent on taking her cues.
 

p.s. how cute is this bonnet? my photo bud made it for me for newborn sessions, but i thought id try it on miller, too.
 
 
 


she eats when she wakes up and then a bit more before the gym. she takes a bottle at the gym (and sleeps for about an hour). then eats when we get home from the gym. then she naps from like 12-3ish.  bc thats a long morning for her. she eats when she wakes up and then a 1-2x more before bed. like 5 and 630.

she loves her fingers, too. she doesnt suck them all the time, but she does love them.
 

these were taken with my new 5dm2. ill reference that later ;)
 
 

she's just so sweet. happy 4 months old, miller.  

and a bit of instagram love.