Wednesday, April 23, 2014

objects in mirror.

the last week of december 2012, our hearts were desperate. our eyes were red from tears. our hands held tight in prayer. the new chemo had to work.

april 2014 seemed like a lifetime away. but in no time, hair fell out. MRIs ticked by. chemo came and went. labs were monotonous. soon it was spring, reese's birthday. summer and vacation. halloween marked a year. then christmas and a new baby.

this new year surprised me with a feeling of promise. i constantly felt renewed and less worried. confident and hopeful. it was the year chemo would end. whether it ended for a lifetime or ended for a little while, it had done its job. an adult sized fist of a tumor was resected to smaller, and then again after growth. and then this protocol - which continued to amaze us.

and now, while i feel as if the rug has been taken out from under me, i have to trust that things will be okay. that we will be okay. no one can stay on chemo forever. no matter what sort of safety net it seems to be.

we went in yesterday, showed off walking skills, had labs drawn. chatted with our favorite people.

(reese's awesome dress by rhinestones and tutus)
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our oncologist told me they were going to reduce the cisplatin by 50% this time because of her high freq hearing lost seen on the last test. sounded okay to me, being the last one. thank heavens this didn't happen before this.

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there isn't much to say except for what i did last night. this morning we were unhooked until the 2nd dose of etoposide and so we went to the playroom. something we have done, now, twice. she has always been on contact restrictions, had an infection, hooked up to too much… but today, no.

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EJ brought ASM up to the hospital today. i wanted them to know that this part was over. to see it. yesterday in clinic, our sweet nurses gave reese some gifts (and a signed card that will go in a frame in her room asap haha) - and so ASRM played tea party the whole time we waited for the etoposide to finish. "aidan!! more tea!!" reese hollered. it warmed my heart to watch her pretend. what a big girl.

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then we were surprised with such a warm and loving "goodbye". gifts and a sign and… i could barely hold my tears back. i had thought we'd just smile and wave. we'd be back next week for labs. but they - the nurses, child life, doctors, everyone - knew exactly how to make it special. ASM tore through wrapping paper to "help" reese see her gifts and, now that we're at home, everything has been opened, put together, sorted, and loved.

reese was de-accessed and that was it.

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we left in our large family caravan of people and headed home. one finished protocol behind us. hopefully the only one reese will need.

in december 2012, i couldn't imagine being here so quickly. it seemed so far away.

but here we are. 


reese's LDOchemo from amanda skelte on Vimeo.


thank you. HERE is a flickr set of the photos people submitted if you want to read the signs :)

thank you for praying for reese. for loving her and sharing her story. for talking about her with your children. for stopping me in public to meet reese and say hi. for making me laugh when i am sad. thank you for reading and following.

we will always have wonder. we'll always need help. things will always be changing. but i am blessed to have constant prayer. now we start to plan things for the future, no matter what it may hold.

Tuesday, April 22, 2014

i will miss this.

i was walking over to get my shitty maxwell house coffee, when it hit me.

i will miss this.

it's hard to say if she'll have more chemo down the road, but for the sake of hope, lets say she's totally done.

i will miss these hospital overnights.

i will miss packing up the car. overnight clothes for miller and now corbin. dance clothes for aidan who is to be picked up by her teacher. reese's backpack filled with extra clothes, things she may want to (but likely not) play with. then my backpack with another shirt and pants - i have limited myself over the months, knowing what will and won't be used - and my toiletries. i started with bringing make up, now sometimes i bring moisturizer. ha. sometimes i bring my camera. i always bring my laptop and planner. recently, i have had to bring my pump. then we stuff it all into reese's stroller. i fight her, and lose, about  wearing a mask, finally make a deal about covering her face with laylee, and go in to the hospital.

i will miss chatting with nurses. nurses who i've grown to know and love. who know me and my family. who care about my daughter. and who show their care in every move they make. who are so smart. who are friendly. who listen to me talk… and talk. who are my liaisons for my concerns and therapists for my wandering thoughts.

i will miss reese scanning and scouring the prize closet after port access for bubbles. that she never really uses, only holds and hoards with her tape measures.

i will miss spending this time with reese, one on one. no other siblings. just me, reese, and a twin bed. during the months where my corbin-filled belly took over part of reese's spot, she just would adjust, lay on top, feel her kick.

i will miss the uncomfortable (but a lot better than ICU!) couch/bed thing here on the oncology floor, where i would spend most of the early parts of the night on my computer while reese slept. the thin blankets. the scratchy sheets. then being woken up at all hours bc i keep hearing the pole beeping. or because reese wants food at 3am. or because, amidst a dream, i heard the faint sound of a pre-puke and so i raced over to catch it. or the tech taking and re-taking reese's blood pressure because its "so low". i know it's low. poke her, she'll wake up and spike it for you.

i will miss tossing overnight diapers with tigger, to the side, only to use pooh bear ("tiny bear") ones. until reese changes her mind and then only wants to use the tigger ones. i'll miss her stuffing coins into gloves and taking out tissues. i will miss nurses thinking that her diaper-wrapped tape measures are the biggest pee they've ever held - and reese audibly correcting them to put it down.

i will miss adjusting fluids for reese's DI/non-DI. i will miss being a know it all. the mom who had it figured out for a while. "well, see what mom says…"

i will miss facetiming family at home. mainly bc EJ knows how to make it look like he's floating either a. in the ocean or b. in space.

i will miss walking to get food that reese will hate and never eat, even though she asked for it. "mommy… i want food." i will miss walking 230948230 times a night to get her ice. and creeping in and out of the room silently while i run down to get my own snack. usually a cookie. they are delicious.

i will miss trying to calm her from screaming for no reason, in the middle of the night. or whenever she wants EJ. which is usually the whole time that i am here - because she only wants mommy when she's here with EJ.

i will miss doing laundry down the hall. and sneaking laylees out bc they smell like puke.

i will miss complaining with doctors and nurses about the same kinds of things. there's some sort of camaraderie there, as they say things in agreement because they are comfortable and then i see their eyes wonder if they should have kept that confirming opinion to themselves. p.s. the answer is no.

i will miss watching full house and friends all night. until i can't keep my eyes open anymore. if king of queens comes on, its time to go to bed. they started friends, on nick at night, from the beginning. i feel like i watched it all the way through, at least twice.

i will miss reese deciding who she likes and doesn't like for the day. depending on her mood, if she'll let them put the cuff on. if she wants them to look at her port. trying to make her laugh with things that put her into giggle fits the week before, but now only makes her scowl. on happy days, i am always elated that they get to see the reese that i see every day - not a cranky kitty.

i will miss telling the nurses to please run her meds in as soon as they get here, at night, so i can put reese to bed. and then wondering whether the meds will be given easily or if she'll want to put up a fight. will she gag on the bactrim? did they order synthroid for the morning? one isn't here and now she's asleep?

i will miss the smell. the smiles. the exhaustion.
...the quiet nights. the tears. the sick kid cuddles.
i will miss the security and confidence in the people around me.

i will miss this.

now we go make more memories in new places. with newer normals... but the same us.

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Sunday, April 20, 2014

happy easter.

flashback time.

sunny easter 2013.
happy easter 2012.
another easter 2011.

last night i got their baskets ready. well, no actual baskets, but the stuff that goes in one ;) i wrote a note from the easter bunny…

… that i left up on my computer this morning. and had to explain to them how "i did think that my chair had been moved!!!" and how rude the EB was to not even ask me ;)

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and then today, we went to the beach. we talked last night about possibly going to the little elm lake - and then this morning made it official. i made sandwiches, got snacks ready, packed them up in suits, got 209384029 things needed for the day packed into the car - and then left. lol
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miller was afraid of the sand for the first half or so. that was fun. lol

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corbin slept most of the time. but then was a happy girl.

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aidan and sawyer competed to build the best hill of sand.

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reese just hung out and watched everyone.

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the water was freezing. it didnt stop A and S from getting in. it was a happy day.

every day is a happy day. that is never the problem. the problems are in the moments. the few seconds a day that take my breath away. it can change the course to bad, or to even better. until the next moment comes.

i felt it once today while driving to the beach. bad.
i felt it at the beach. good.
i felt an overwhelming, chest clutching feeling of love while talking about snacks tonight upstairs. good.
i felt it when reese touched and simply mentioned her head tonight. bad.
i felt it when she went into my bedroom, got her walker, stood up, and walked into the family room with it. good.
i felt it when she reese asked if i was a kitty (meow meow). and then scratched my head and meowed back, tonight, when i was putting her to bed. good.

no, that was great, actually. all of those good moments were great.

its not something that i will likely ever get away from. this will happen for decades. forever. reese will have a long day with her kids and call me over a glass of wine and tell me that her head hurts.

...and my breath will be taken away. just like that. and then it will pass, like it always does. when i rationalize my (only semi) irrational thoughts into compartments.

we got home, took some naps (not reese! don't kid yourself!), made dinner together, aidan set the table bc she "wanted to be fancy!" (lol), then we took baths, and watched frozen (duh).

it was a happy easter. as it should be. i hope that your day was filled with love and happiness and remembering what the day was meant for.

I Corinthians 6:14 “By his power God raised the Lord from the dead, and he will raise us also.”

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