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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Wednesday, April 16, 2014

then little steps.

i imagine if you read my blog all the way through, from dx to now, you'd feel like you were on a roller coaster. its cliche to say so, but i do feel what way often. and i hate roller coasters.

we had our 3 month MRI yesterday. it was a long day. i woke up at 5am to get ready. reese, corbin, and i headed downtown by 6am and then EJ took the girls to school. he got there about 830/9? i dont remember. she was out by about 10 or so and then we went to help her wake up. we went upstairs for our "after" appointment. we waited… and waited. first glance said tumor looked stable. alright then. i agreed that it'd be okay if they just called me with the official reading later.

i kept my phone on me. literally. i knew if i walked away, i'd miss a call. i called at 230 or so to say "hey. still waiting!" and someone called me back later to say "they are looking at it now". our onc called us at about 830pm.

basically he said that there were 2 things to mention. one was that her tumor looked stable, which he was happy with. ok neat. i need to remind people, i think, that her tumor doesnt necessarily have to go away. it can just die. ish. so if for the rest of her life we heard "stable", then that would be totally okay. the second thing was that there was some spot, far away from her tumor, that they wanted to look at again in 2 months.

of course my heart sank. damnit.

he said that he and the radiologist looked at it for a long time. they couldnt decide what it was or wasn't. they asked our neurosurgeon to look at it. she didnt feel as if it was something we needed to look at right now. and keep in mind, they have all rushed when they have felt the need to rush. i trust their "wait and see" a lot. he can't tell me its not tumor - because how does he know that for fact. he can't say it is because that would be strange - the location, the chemo progress, the main tumor shrinkage from the beginning (which is impressive for size reduction). he can't tell me it will or won't just go away. remember in december there was weird things on an MRI (not the same as this), but it just went away by the next MRI. i think it was last summer, they accidentally did a spine MRI when they were doing her brain - and a doctor mentioned a spot that they'd look at later - that went away, too. none of this is the same, of course, but just to say who knows.

i find it very hard to believe that my talking, walking, joking, thriving almost 4 year old is some how, not…

anything is possible. so for that we just pray. he can't tell me we won't need more chemo. there are more plans and protocols if need be. i just don't really want to need them. i joke about staying on chemo forever, since the feeling of losing that safety net can take my breath away. then i am faced with a half second of thinking about more chemo and i immediately regret any alternate comment.

worrying does me no good. not one smidgen of help. so last night i let myself be sad. and then that was that. i took my sweet girl who desperately missed school to her favorite teachers and friends, today. when she got into the car at pick up, she told me they went outside and played on the swings (which by the way, she never used to do. she hated the swings. i figured it was bc of the tumor). then she told me they had an egg hunt ::sigh:: what a fabulous morning.

2 days ago, i had some sort of… daydream. i had set myself up for something amazing, which i rarely do. i thought to myself "what if he said it was just gone? what if her tumor just disappeared?" and i think thats what was so hard - i had been living in some sort of "whoa, look how awesome she's doing" bubble - that the pop, was difficult.

but tomorrow, she goes to school again. and then again on friday. like a normal kid. next tuesday we will have our "last chemo". i will celebrate. we all will celebrate. we'll have another MRI in mid-june, assuming all goes well in may, and then figure it all out then. or not… maybe there won't be anything to figure out.

for now im going to go pick out which photos i want to order of reese's first school photos. i am going to relish in the giggles i hear upstairs as aidan is sleeping in reese's room again tonight. and i am going to try to remember that i cannot change things by being worried or sad. we can only enjoy every moment with each of our kids. which we'd be doing no matter what the MRI said. no one is guaranteed tomorrow.

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Monday, April 14, 2014

big steps.

literally.

i dont know we got the small metal walker out, but we did. i put some glitter pink washi on the bar and called it her "sparkle walker".

the next day, i brought it, on a whim, to target with us. its easily tossed into the front seat. she wanted it to come. that, alone, was huge. but then she said she wanted to walk into target.

and she did.

i had heard "i hate my pink walker" for so long. a very expensive piece of metal, taking up space in the dining room..

now, let me explain how this went. i got corbin into the basket of a cart and pushed that along as we ever slowly walked across the uneven ground. she yelled at cars that were coming. yet everyone patiently waited for her to pass, waving and giving a sweet smile as they drove by.

we got to the other side, she teetered back a bit, and i rescued her and tossed everything into the cart. i was beaming. just so proud of her.

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i kept at it. she uses it around the house, sometimes. she walked into PT with it. its just wonderful. tonight she walked about 4 steps from standing in the middle of her room, to me. and she has also started using the pink walker again because of her new found confidence.

things, in general, are wonderful. there is reese in a good mood and then there's reese how she's been recently - which is awesome. not being sick, helps ;) but we truly spend all day laughing and making jokes and cuddling. we are kitty cats, we write hearts on our hands. we have fun. she is starting to act more "hi, im 4 years old." and less OMG OUTRAGE three'nager.

we have her last MRI while on chemo, tomorrow. and yes, then we have a meeting after that - so no waiting. i am not nervous. at least, right now. i dont know why, but i feel very at peace, mainly feeling as if she is going to rock it. tomorrow, i will feel less certain. but i'll be up at 5am, drink my coffee, feed corbin, pack them both up, and head down as confident as i can be. EJ is going to take A and S to school, then meet us. M is already at my parents' house since they didnt really want a 6am drop off ;)

at labs last week, i tried to get some pics of reese doing what she does. with the people she loves. miller came with us and was, surprisingly, great. reese walked the hall, gave cuddles and thumbs up, and gave some blood. all in a days work, i suppose. how so strange it will be for these to become less frequent. being ripped from a routine is miserable. i felt that way about "drop offs, gym, pick ups, dance" that i had before reese was dx. how strange that i feel even worse about going back to that this summer.

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i feel the need to rush and make memories. different kinds of memories than i am used to. i just want to make sure i document how things go right now, at the hospital. people she sees, things she regularly does. i don't know, but its overwhelming. i want photos with doctors and nurses. we will be seeing them, all of the time, still. but eventually in a different type of setting, i suppose... or hope... or whatever. i am trying to plan next week's "end of chemo" in-patient. and that is tipping my scale.

reese had a hearing test today. meh. she has dropped off on her high frequency hearing. which is to be expected. and we're almost done, so...

i think she expected me to make a sad face or something, but i just said "oh ok. thank you!" and went on my way. all things considered, high frequency loss is pretty low on my freakout totem pole. she could be going deaf and we'd say "i guess we should all learn sign language" - because in the end, it just matters that she is here with us. and happy. so this was okay.

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aidan woke up from a sleepover on saturday and her eye hurt. long story short, EJ was at the legacy children's ER that night - pink eye and a corneal abrasion. :( sweet girl. she was simply excited about "a bracelet like reese!" i kept her home today, from school, but at least she's not contagious anymore (we got the 8 hr meds). let me say, eye drops for 5 days, though, is no fun for a 7 year old.... or the eye drop giver. ::twitch::

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we spent yesterday evening at the splash pad. after hearing that this week was going to be so cold, we had to get out and get some sun. they had so much fun just running around and eating dinner picnic style.

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summer is coming. freedom is coming. i am hesitant and nervous... and excited. the countdown to reese's last chemo is about a week. i have to get my thoughts together. and pray that this it.

another new normal. after already getting used to this one.

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