sometimes i forget.

sometimes i forget. 

tonight, the 6 of us went out to dinner. we're setting at a mexican restaurant passing out tortillas and eating queso when EJ stops and asks me "hey, remember when we lived in the hospital for 6 weeks..."

well, not really. 

in my head, it seems almost impossible that she was there for that long originally. where were the other kids? how did we rotate? what about work? how did we shuffle that around?

i know the answers to those questions, in reality. but in my head, it wasn't 6 weeks. 

i don't look at reese and think BRAIN TUMOR all of the time. i rarely do, actually. sometimes i can't help but tear up and think what bullshit it all is and think about everything she's gone through - and still has to go through, but day to day, she's regular reese. and we're blessed with that being the case. 

sometimes i forget about anything before 10/31/2012. my computer was running really slow tonight so i was going through and moving photos over to my external hard drive. i came across pics that i didn't even remember. tiny reese with a mop of hair standing on a chair in my kitchen, at the island. 

weird. 

i barely remember her that way at all. not to say i don't have fun memories from the first 2.5 years of her life - of course i do. but the past 6 months have completely... overwhelmed? that part of my brain. i don't remember her walking, really - even though she was doing that since 13 months. i don't remember her going to school (which, i mean, she didnt really go that often/long). i don't remember a lot of specifics. 

but i can tell you most specifics of the past 6 months. some things are a blur, but there are details that i remember that normally would be a blip on the radar. 

a friend of mine blogged this week and it hit me hard:  (grayson's birthday is days within reese's. and they found his brain tumor on halloween night, last year, as well. thanks to the internet and blogging, i have found someone who "gets" me.) 

"I actually forget that in the whole of the United States only 2,900 mothers a year are ushered into a tiny room and told that their baby has a brain tumor.  I forget that out of 313 million people living in the United States Grayson is the .000009%.  At the end of the day, I often think, "It is what it is" and 90% of the time this new life seems very normal.  But there are moments when the enormity of this crashes down upon me and I feel like I can't 

The stats are what surprised me. Guess what, though? i don't want to be rare. i am sick of being a statistic. and i don't want to be a pro every day. 

But i am. Maybe i should be proud of that. But sometimes it just hurts. 

At the hospital last week, we waited all day. a very very long day. we ended up in the infusion room with one other family, waiting for our room on D6. I could tell that the other family was there for the first time - mainly because mom, dad, and brother were there. usually, not everyone comes to chemo clinic for most families - not everyone can take off that much work. eventually, we all go up to D6 together, the nurse tells me to slow down since "it's their first time". i walk fast in hospitals. But then i thought about how "pro" i felt. a pro i didnt want to be. i knew where we were going, how to get there, which elevators get you there, where their room is.... 

then we get to the elevators and an anesthesiologist gets off and says "hey!! how are you?! how's your girl doing!!?" so enthusiastically. he's my favorite. he was the one that let me in to the OR to help reese to sleep when she had her port moved. but do i really want to know so many doctors that we say hi in the halls?

i never thought that i would be able to tell people which floor does what, how to get to your car from xyz, and that the best food is here or here. i never wanted to be that person. i still don't. but i am. 

sometimes i forget about life before the tumor. its easier to forget when i see the advances that reese has made in speech, for instance... the before isn't as awesome as the after. then with her hand, that was a slow process since july. she was a quiet, but hilarious soul - and now she's just louder ;) 

on a good note, our oncologist is sort of ::eyepop:: about reese not needed her ddavp shot for DI. he said "i may not be that old, but i am old" and while he "hasn't seen everything" he has "seen a lot" and he has "never seen someone just be over DI" if that happens to be the case in the end. 

well, duh, thats bc reese is a miracle. and God wants her doctors to say "well, i mean, there was this badass named reese who somehow was cured of DI so who knows!" 

and they'll say the same thing about her tumor. at least that is my prayer. 

the onc kept saying "man, she looks so good, doesn't she look good?!" and "what a difference. wow." and for that, i am elated.

i have so many photos coming. reese's birthday, sawyer's preschool graduation, IG pics from in-patient last week... but right now this is all i have. 

thank you for every prayer. keep them coming - God listens. 

soccer mom.

so sawyer started soccer.

this is aidan's third season. she loves it. but she also doesnt mind wearing jeans or t-shirts.

when sawyer put on shorts and a tee today, i barely recognized her. then she topped it off with a sparkly red headband and then i knew that she was still under there ;)

EJ took aidan to practice and i took the other ones to sawyer's.

they are called the "goal diggers". no we didnt choose it. yes i think its awesome.

it was so fun to watch her. she has no idea that in soccer you cant use hands. even though we told her 20394820 times. so we told her to put her hands in her pocket lol

this has been an interesting week for us with reese's meds.

we havent't had to give her DDAVP shot since monday morning at 5am. but let me explain this again --

so we give her the shot when she "pees out". that means that (around every 12 hrs or so) she starts to pee a lot. a big diaper. or 2 larger diapers. then the shots stops her body from peeing out again. usually at this point in the day, her ins and outs are out of wack --- there is more OUT than in - which then leaves her sodiums to go higher.

so she has not done all of that ^^^ since monday. on tuesday we went in for labs. sodiums were 140. awesome. then i talked to the endos on wednesday they said labs today. so i went to labs - sodiums 145. awesome. soooo they want me to go back tomorrow. if she does flip to more on OUT than IN tonight, then we're at a good spot to give the DDAVP, but they only want a 1/2 dose. which is, like, almost non-existant on the syringe. like, we have to make up the spot its so small lol

they seem to be baffled? lol i dont really know. she should be peeing out bc of her DI. her sodiums should be all "omg come in and stay for 24 hours!!!" and honestly, i expected that today... but no. so we shall see, i guess what they are tomorrow. the math right now says about even on I/O so we may be doing that 1/2 shot tonight, but, i mean, thats the first time since monday early.... its just weird.




coming up for reese next? MRI at 730am on march 19th. so i'll get there about 6am, hide all drinks and food from her (the worst part of the day) and then MRI. then we'll go down to chemo.

she feels good. she is funny and happy and dancing (check out my vine --- punkfictionv4 --- there are dancing vids haha). she just hangs out and laughs and is so... normal.

we're having good days. thank you all for your prayers and thoughts and love. i'll update on the sodiums as soon as i know tomorrow :)

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.

the best 5 days.

so we have been doing our "new normal" for 5 days now.



5 days of wondering "wait, was that peeing out? did she breakthrough?" "did you mark down that 150ml drank?" "how much did that diaper weigh?" "are you going to wake her up while i get the meds ready?" and so on...

my best friend, ashley, from Lily Toes Photography yet again outdid herself by putting THIS video together of our going home. i cry every time i watch it.

you can see in the video how weak she is. i want to remind people that she is not actually... sick? i mean, she doesnt feel sick, really. she is just weak. she cant stand, cant walk. she can only sit for a while before needing to lay back. she needs help from going from laying down to sitting. as we were told, we trying to do things with her during the day -- she spent weeks laying down. while tv and relaxing is good for the soul and we do that often, sitting up, playing, trying to stand, and being interactive is best for healing.

she laughs. she smiles. she welcomes everyone that comes into the room with arms out and a holler of their name. she hugs miller all the time. she loves petting the dogs. she's been playing blocks and other toys.

on a PT front, things she didnt do until home - reaching forward, rolling over on her side, trying to sit fully up, stacking blocks. and, well, playing, in general. PT and OT had a rough time, but within a few hours of being home, reese was back to what she knew.

the last few days have proven that family and home is, indeed, the best medicine.

thursday night, we gave her a bath and put her to bed. PJs open so we could sneak her ddavp in later.

on friday, we played. lots of playing. sisterly love at its finest. with some cheese-cheese thrown in.

saturday morning, we brushed her hair as best as we could and put a clip in and set out to get her out of the house. she needed bigger shirts (as you can see bc this one fit her so we kept her in it haha).



what a happy girl she was all morning. just getting in the car and sitting in a stroller for a few mins had her smiling from ear to ear.

we got home and brought out all of the christmas decorations. i have been waiting for this for weeks. just the entire family getting ready for christmas. the girls were silly.

then, that night, i took my favorite photo of all time.



then i found aidan asleep like this. lol

on sunday, my brother and niece came over and brought goodies from his MIL. so later, A and S decorated gingersnap cookies while miller made a huge mess haha reese looked a bit more like herself :)

and reese snuggled.



then we had a cozy night :)

this morning was business as usually. i got aidan ready for school first.

we did the rest of the morning duties and then it was naptime, apparently.



well not the whole time

this afternoon we picked aidan up from school and then, before dance, aidan brushed reese's hair. reese so so loves that.

and then here we are. 5 days in. 5 days of having the skelte 6 under the same roof.

we have a long long road. we have 7 types of meds to give on various times, multiple times a day. which, by the way she hates. we have chemo once a week for 15 months. we have PT, OT, ST multiple times a week. and then we also have life. regular, boring, day to day crazy town life.

the prayer warriors that have been thinking and praying for reese for the past 6 weeks are nothing short of amazing. the donations, the gifts, the postcards... i cant say enough times how grateful i am for everyone. you look at life differently when you see the type of community you have around you -- full of love.

so now, ill go give reese more meds, wait for her ddavp shot, cuddle on the couch, and go to sleep - knowing that i'll see my baby immediately in the morning.

okay and maybe in the middle of the night ;)