Monday, September 30, 2013

the newest normal.

the newest normal for us, now that school has started for ASM, is PT/OT, shopping ;), appointments, lunch with friends, chemo or labs, hospital for occasional fever, dance classes, soccer games... its not so bad. exhausting at times. now that im getting, erm, larger lol with corbin in here, some things get bit harder.

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like sleeping on a twin hospital bed with a 34lb chub of love...

but it works. because reese asks to "cuddle with the baby" and lays on my belly.  and it has to work because thats where reese asks me to sleep. in bed with her. so thats where i will be. i mean, why not - she's been in our bed since she came home in december last year. ;) so....
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on the update side of things - we went in for a low fever last wkend from fri-sunday. since we left the hospital for chemo the last time, reese has become more aware of her port. randomly at home she'll say "no doctor touch my port. no port." so being at the hospital entails a lot of distractions. every doctor or nurse that comes in, she tells them that she'd like her "port off?"

she also yells at her IV pole, which she calls "my beep!!" and says "shhhh beep!!" when it goes off.

she's understanding the medical world a bit more. we can explain when we have quick vinc "port on and then we'll take it off and put a bandaid on" and she seems to understand a bit more that its not staying accessed. but its hard to distract her for an entire weekend, saying that not everyone can just pop it off because she asks to go home.

we cuddled and laughed and watched "too cute" on animal planet for hours, while at the hospital, the night i stayed with her. its quiet at the hospital. its not ideal, but its nice reese time.

i love just me and reese time. we have a few hrs on monday and wednesday together alone and we run around town like best friends until its time for PT/OT and then nap. then we run around picking sisters up.

last week we had our final eval for PPCD and looks like after a few meetings, she'll be going! it'll be so awesome for her to have therapy often and be around kids her age for a few hours a day. it will be hard on me, of course. as i type it, i want to cry. i want to just keep her with me all day. watch mickey, go shopping and lunch, cuddle on the couch. but i know she needs role models her age who walk and talk... who she wants to be like. she learns so much from peers. i see that with her sisters every day.
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she has been using complete sentences more often, which is amazing to me. she opened her hand, several times, at dinner last night, to hold her cup. she stands up on the couch (and cruises) as if its never been a problem. she also passed her hearing test WITHOUT being sedated -- so that is awesome!!
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we went to jumpstreet yesterday afternoon. i think i was more impressed that reese just bounced and tossed around like a normal 3 year old. i want all of these things to be indicators of a good MRI coming (october 16)... to feel confident that we will get good news again. that she is in fact a miracle. and that what the doctors ordered is exactly what she needs for her tumor to die.

but sometimes i google and think OMG WHY DID I DO THIS?! no really. why do i google? i am then reminded of things the oncologists have said about stats and things. tumors arent the same. PMAs arent the same for each kid. protocols arent the same. its just not the same. but then i start to get queasy. i think about the worst. and then i pray. pray for peace. pray for healing. i pray that things continue to progress and that we see as many signs of "wow. reese, thats amazing" as i have been seeing. i pray that we dont see another setback, like last winter where her chemo didnt work. i worry about hair poking up and thinking "that must mean nothing's happening!!" and i make tiny comments to the nurses who smile and tell me that its totally normal.

nothing is truly normal.

today i actually made sure i could pick her hair off. it somehow made me feel better to know it was *this* close to coming back out.

but we can spend our days living as if we are normal, right? so we go to places like jumpstreet and main event, when counts are high, bc the girls have so much fun together. reese loves to do all those things - to be normal. to jump and bowl and play pretend video games. she loves to go to the dance studio and wait for A and S. she loves to ride in EJ's jeep. she loves to go to my parents' house after labs/chemo and eat mac/cheese. she sits up in the front seat while we wait in the school line for aidan and sawyer. every day we take a pen and put a heart on the inside of my palm. and one on the inside of her palm (and sometimes miller's if she wants to.) and high 5 or hold hands and put our hearts together. one day, that will be tattooed on me. throughout the day we show each other our hearts. then we give A and S one when they are around, if they want one. "just like the kissing hand!!" aidan tells us.
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soon we'll do all those things without thinking about counts, labs, chemo.... just because.

on other kiddo fronts -- aidan got her eyes checked bc she was getting headaches and said things were blurry sometimes (yeah, man, good thing to tell brain tumor parents, right? lol) and she needs glasses. i got her the most adorable frames everrrrr and they'll be here this week :)
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sawyer loves kindergarten. she hates soccer. but she goes and sort of tries. lol she likes dance, though. even if she gets in trouble for socializing the entire time ;)
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miller is hilarious and talks all the time. she and reese are the best of friends. reese wants to go get miller, with me, every morning. which is heavy coming down the stairs. usually we all just scoot together lol then reese gives miller noogies and tousles her hair, like a big sister does.
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living each day as it comes, this fall gets harder and harder as october creeps up on us. last year, october was filled with missed preschool days bc of random, unexplainable pukes that seemed to have resolved in an instant. leading to a very sleepy child and no peeing. ER visits for "UTIs and dehydration" (snort.), and finally, ending the month by being told she has a brain tumor. the month was sprinkled with halloween crafts, the pumpkin patch, and other events as we thought things would somehow resolve itself. since the concept of a brain tumor was obviously out of the question. even having an MRI scheduled for early in the month bc her "bad arm" wasn't working - but having to cancel that bc she was sick.
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this year we'll have halloween crafts, the pumpkin patch, and other holiday events without a sleeping toddler on EJ's shoulder. without a kid passed out in the stroller as we just kept thinking it was the dehydration or a virus or something else the ER docs said. this next MRI will take us through the "anniversary" of the worst few months of our life - and will hopefully turn into the best. trick or treating with sisters, thanksgiving food with family, a new baby... and a christmas without brain surgery the week prior. i am excited for the possibility. and praying for certainty. even though we know nothing is certain - except for the day we have and the love we give.
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Thursday, September 12, 2013

who i used to be.

aidan came down last week and said her head hurt. i felt her head, slight fever, gave her motrin, and told her to get back to bed and no dance. i checked on her throughout the evening, but otherwise went on with our night.

thats who i used to be.

i used to be the person people called to be talked off the ledge. telling people that fevers or symptoms, etc were "no big deal" and to do simple things to fix them.

i am not that person anymore.

i am MORE nervous when we go to chemo than i was months ago. generally i keep wondering if its still working. i mean, its been months! maybe it doesn't work anymore and no one knows! now, remember, thats not the feeling coming from any doctors what so ever. we get high 5's and "wooohooo"s and no fear of random failure, really. but that doesn't stop me lol

we went to chemo on tuesday - new clinic at children's! (yeah, im excited. get over it. you can order food while doing infusions and waiting for a room and thats pretty much the best lol).
CMC rooms1 CMC rooms2 CMC rooms3 CMC rooms4 reese finally fell asleep on the table while i played on the web for a while. her port was working fine, but our problem now is that its kind of, erm, crooked. when we were going to start fluids, it didnt draw back and when we were going to have to re-access - it did. so. we started. as long as you can get blood return, its working. ALSO, the IV machine is smart enough to know the pressure is too great as well. (so before you ask, no, there's not a chance chemo "didnt get in" or something lol)
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we go to our room ^^^, the port works fine most of the night - and then in the morning, reese was moving around and the IV machine yelled at us. reese started complaining and sure enough - fluids were basically coming out the top. luckily, we didnt need any more fluids, but we DID need to re-access her to heplock her :( i knew this would be horrible.

they numbed it quickly, re-accessed, took sodiums, and de-accessed. by this point, reese was just so upset. it broke my heart. i really havent seen her like that in so long that it killed me. really, the whole evening before, she was upset. she's getting older - so she understands things now that she didnt before. when facetiming EJ, she was crying saying "no doctor, daddy. i wan' go home" - and i pretty much lost it. she stayed awake on tuesday night until she couldnt anymore. and woke up puffy. just tired eyes (like EJ gets ha)...

after de-accessing, we waited for sodiums and papers to leave. reese slept (in her stroller - ready to go) and woke up looking better.

yesterday afternoon, reese said her head hurt. which of course sent me immediately to puke. truly. i called oncology and told them - but reese was only touching the brow bone. they said zyrtec bc she's been congested and boogery for DAYSSSS - so likely sinus. and sure enough - she hasnt mentioned anything since. she has boogers still and itchy eyes, but no more head complaints. (and honestly, her sodium all tues/wed morn was like 143 and then right before we left was 137, so that could have been it, too).

for any other kid, id have assumed sinus. for reese, i can't. an onco told me months ago, when i worried when reese said "ow" and touched her head then, that we have to remember that she is still a kid. a kid who gets sick like normal kids. my entire house was sick this past wkend minus me and reese. the school year germs killed us (mainly EJ. omg poor EJ was so sick...) - so i am not surprised that reese felt it a bit.

but me? i barely ate today bc i was so nervous about things. id see her itchy eye that was bloodshot on one side and think OMG WHAT IS THAT?! (oh, maybe her eye she's been itching). i wonder whats going on in her head. i wonder "is that a bruise?! did i see that before?! did i already mentally note that?!", but then i am reminded that ive already been told that reese's tumor isnt going to come out of her head in the form of a bruise ;) bc ive asked that, of course.

all day i have stared at reese's eyes, doing mental neuro checks and watching her. knowing i don't see anything, but then thinking "maybe i do?!" but no, she's as normal and happy as ever.

when miller sleeps extra long, i do a happy dance. when sawyer falls asleep in the car, i quietly cheer. but i literally count how long reese has slept every day - wondering if 15 mins longer than the day before qualifies for "or if she's sleeping more".... of course it doesn't. they mean like a bit more than a year ago, when reese slept all day. when she slept in the morning in the car, took a 3-4 hour nap, fell asleep in the car in the afternoon, and went to bed by 6-7pm. a 2 hour nap a day does not qualify.

i'm just not the same. and thats okay. i will never be the same, right? like a friend said, when reese calls me from college and tells me she has had headaches, ill demand an MRI. ill never be able to relax 100%. i wish i could. i wish i could be as free thinking as i was a year ago, but thatll never be.

but you know who else ill never be? someone to takes advantage of the day. someone who lets their kids play without joining in. i have played on the floor with blocks more in the past few months than i have in years before. because i have realized how much it matters. i don't edit during the day time unless kids are sleeping - not even just playing quietly - bc i want to BE THERE with them. thats not to say that sometimes i want alone time - or that i dont get on facebook from my phone while watching mickey's clubhouse, but we sing a lot more songs. read a lot more books. live a lot more life than who i used to be....

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i have friends who i love and text and message and cry with about things that i didnt even understand a year ago. i am grateful for so much more. i feel so much more. sometimes i wish that i didn't, but that doesn't change the fact that i do. i dont want to be numb.

NOW let me update on the awesome things!!!

1. reese had her first PPCD screener :) it was so great. it was, first of all, amazing for her to be around people who chatted with her like they understood everything she said. ;)
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2. soccer has started. so saturdays are filled with 2 games almost every wkend.
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3. my bro/sil had their 2nd baby - a BOY!! reese and i went up on tuesday morning, to see them, and she was smitten within minutes. good thing she's getting her own little baby this xmas.
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4. which, btw, we are naming Corbin Rose. and here is why....
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5. school has been going great for AS and M. i knew that aidan would continue to love school. but im glad sawyer and miller do as well. makes me day easier knowing they are happy. reese and i took our alone time the other day to go for a walk. it was so nice.
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so. yeah. who wants a prayer list?! :) for our friend phoebe, for the family of 80, for our newest friend jaycee, who just found out 2 weeks or so ago that she has leukemia. that entire transition period is so hard. and for reese, that she continues to heal, that she feels better every day, that the tumor keeps shrinking, and that random things are just random things - and nothing bigger.

and that i can handle waiting til october 17th for our next MRI.

i love you guys so much and i feel the prayers. please share them with our friends tonight, too.
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