as a whole.

as a whole, life seems to feel.... good.

reese feels good.

we went for chemo on tuesday. cisplatin first. then etoposide (vp-16). i got there at about 3pm. got a room about 3-4 hours later after hanging out in the infusion room. and then they started chemo at, like 9pm.



one round of etoposide the next late afternoon and we were sent home. high sodiums (about 153?), but we were comfortable handling that. the next afternoon we went back for another etoposide and now we'll just go back on tuesday for labs.



reese has puked a few times a day. we stay on top of it with zofran. one night we did alternate between that and ativan, but over all, it doesnt bother her necessarily. she just pukes and goes back to bed or back to what she's doing after we clean her off and change her clothes.

they say cisplatin's side effects of puking "peak" at day 4-5, so we still have a bit... but she feeeeels good.

she talks, she uses her right hand as an assistant and is much more aware of it, she laughs all day, is sneaky ;), and is just overall so normal.



i made the mistake of watching her "going home" video last night. she was so different. its no wonder that the oncologist is just amazed at "how good she looks!!!" - she was just so weak. didnt really hold herself up, was so... sideways (with her eye and smile) compared to now. all of it was so different.

so today i am thankful of how good she feels. and praypraypray that she only gets better with every chemo treatment.



this past week, ashley and i went around town scouting for new locations. we drove around town with kids upon kids packed into my car.

on thursday night, i let loose. i let aidan and sawyer have a time to remember.

 

today was a fun day, too. aidan had soccer this morning, then dance at 1pm. we went and ate lunch, came home for naps, then i took ASM to the park while EJ took reese to some guy store that i have no interest in ;)

they did their fave thing almost the entire time.... the swings.

 
tomorrow we have nothing, really. hopefully not a lot of laundry puke.

after my vent session a post or two back, i feel better. i feel like we are at a place where we just are getting into a rhythm and its nice.

i wanted to add this, too -- MILLER'S FIRST BIRTHDAY VIDEO!! ***click!!

also, in the IGs you'll see aidan's hair all up and cute for dance --- i don't think i posted this on my blog, but HERE is aidan and 3/4ths of her mini squad performing their dance for only the 2nd time. and may i say, i think she's awesome ;)

and to answer this question, which i get asked a lot:  when is the next MRI? this i am not 100% sure about, but i *think* it is going to be before we start the next round. that will be 2 months. i will ask on tuesday. :)

alright, on to the IGs of the past few weeks!! (punkfictionv4) -- remember the first hospital pics here are from her sedated hearing test to get a baseline (etoposide can reduce high frequency hearing....)

 

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.