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.

i swear i am real.

for a little over 4 months, i have driven thousands of miles back and forth to dallas children's hospital. 

i have had more than 5-6 hrs of sleep about 3-4 times. one was in the hotel at aidan's dance competition. it was amazing. 

i answer to a 2.5 year old all day. and she yells. she wants crackers. but we don't have the crackers that she wants. right then. we have the crackers that she wanted yesterday. ok then how about an oatmeal bar? oh, well, it seems sawyer at the last one for breakfast. ::reese'splosion::

i can't throw away diapers, ever, if im out. i have to take them home and weigh them. i mean, maybe i could not do that, but we're kind of anal about ins and outs. so i do. 

when i am at home from the hospital, i still have 2 children who have school, dance, and attitudes. and 1 child who wants to take naps when i am having to do those activities. she also has an attitude. 

i have zero time to do laundry. or rather, i do laundry all the time -- its just the same load that i keep re-washing/drying so i can take it out and fold it. but then i forget bc we're at therapy or school or something and then i have to re-do it again. so by the time thats done, i have something else to do. so now i just do a holyshitton at one time. then we all put it away. eventually.

i feel like i talk about myself all the time and i hate it. but in actuality, its just that people ASK me about whats going on all the time. its not like i can say "oh nothing" like i used to. bc there is always something going on. so i try to make it short and sweet and not sound callous about it all. bc i am not - i just dont want to take over the few mins i actually GET to talk to friends. 

...minus ashley and brittney. and my mom. they can get over it ;)

i want to go on a date with my husband. and its not that i can't - bc there are qualified people willing to babysit. we just won't. not yet. reese would get upset and then id worry about that. and we'd think the whole time that she is just yelling for us.... but reality is that she'd prob be just fine as long as the sitter pretended as if she was reese's butler.

giving reese medicine is world war 3 every time. she hears the words in conversation and says "nooo!!" but in the end, we win. she takes them, but she puts up a fight. i think she accepts the ddavp shot 100x better than knowing liquid meds are coming. and they don't taste that bad lol

some days, i count down the minutes until bedtime. bc i just don't feel like talking to anyone anymore. there's so much noise all of the time now. i dont know why it seems that way lol

i miss the gym. i miss my friends. i miss working out and feeling energized for the day. i feel like a frump and then act like one, too. the classes i went to are at 9/10am and now we have PT/OT/ST at those times 3 days a week. and then chemo on tuesdays. so friday is all i have. but its not like i can bring reese to the gym so.... anyway, i signed up for another gym bc they have 8pm classes and they let you try it out and i was so "wahhhh" about it bc its not like LTF and so i'll prob just complain every time i go. hmpf.

i have to plan showers. if reese is sleeping, its in my room so i dont want to go in and possibly wake her up while sneaking into my bathroom --- or drying my hair. so i have to plan them so she can be awake and can just sit on the floor and hang out while i shower. bc there's no where else to put her really. at least no where that she'd like. but i don't want to take one first thing in the morning bc im tired. and plus thats when EJ showers. 

its kind of like having a newborn. 

like at 4am, when reese wakes up for some reason, its sort of like when you have a young baby who wakes up to eat. if you talk too much to them, they wake up. if you turn on too many lights, youre effed and now they think its 8am. so thats how i feel at those times. "STOP TALKING TO HER!!!" when EJ tries to chat it up with our very sleepy 2.5 year old. sigh.

all of this to say "i am a real person, too." i pride myself and how we handle each day. im organized, im generally stress free about everything - but that doesn't mean i dont have things to complain about lol i just... take everything in stride for the most part. but sometimes, i do get sad for my old "easy street".  

i want to take reese to the park and watch her climb all over the playground. i want to go to the zoo without wondering if thats too much crap debris in the air and think "should she wear a mask?". i want to be able to go to more stores than just 1 with reese and miller bc that one store has 2 baby spots up top - and its just easier that way. petty things, of course. but meh. 

but then i remember a few things --- i have a very happy and soon to be very healthy reesey. she is thriving. and she is here. alive and happy. here. 

i have a very wonderful husband that takes care of our family. who takes care of me. who works hard and then comes to the hospital to swap me out. 

i have 3 other children that amaze me every day. their sweet souls, their hugs and kisses, their love for reese.

i have family in town who help me at the drop of a hat. no questions asked. i have friends who let me come over bc i juuuust need to see another adult face to face for a few mins. and i have prayer warriors around the world who love reese so much.

right now all i have is some IG (punkfictionv4) photos. my "real" photos are all about miller's bday (feb 6th) and i'll post all about that soon :) we've sort of spread out miller's birthday a lot due to a drop in ANC for reese and reese's random hospital stay (thurs-today) because of a consistent 99-100deg fever and an ANC of zero. but she is home now and asleep cozy in bed with EJ. i will follow them soon. 

chemo and competition.

after the good MRI news of last week, we went back into chemo on thursday. they are such long days. you go in, you wait.... you see a nurse, then wait... see the oncologist, wait some more.... then you wait for a room.

it was taking so long that we finally just went to hang out and watch a movie in the infusion room instead of sitting in a clinic room. we watched cars, she napped. i played on facebook while she slept. finally, we went to the oncology floor.

after that was more hanging out. all day.... all night... chemo, mesna (to help with the bladder), lots of fluids...

EJ came on friday and brought donut holes. which she hasnt had in weeks bc we cut out that excessive sugar, but hell, she deserves it. she was elated.

she puked. several times. in fact, she is still puking when she hasnt taken zofran. tonight she puked in the car. last night, we heard that horrible wretching from the couch and took off like lightning towards the bedroom, tossing laylees around so they wouldnt get vomited on. maybe its the viruses going around... maybe its the chemo. but it sucks.

her ddavp is so strange right now --- we're at 1 unit. [if you remember, we started at 5 units. then after the first chemo went down to 2.5. a few days before this chemo we were down to 2 units]. and the 1 unit is lasting too long. bc of the puking, i assume, she only "pees out" (which isnt even as much as it was, but at least she hits negative for output) 1x a day. not every 12 hours.

we went in sunday morning to children's legacy for a sodium check and, we assumed, fluids. but her sodiums were 144. which is perfectly fine. so they just came home...

she is acting normal, she is happy.

tonight, someone actually said to me "how old is she?" "oh, 2.5" "well she is a great talker!!"

what?! haha i retorted back "well, since december, she has been!" and explained how the 2nd resection seemed to have lifted something off that part of her brain. but never did i think someone would be impressed with her tiny little voice that only i thought made sense.

yesterday we had PT. that was fun. she showed her how she scoots on her booty ;) tomorrow we have our OT eval. then thursday, back in for vincristine at 10am. then, i believe, we do not have chemo for a few weeks. we'll have to postpone miller's bday party by a week bc the wkend we would have it, reese's counts would be too low, but the next weekend, before another in-patient, they'll be perfect.

this wkend was also aidan's FIRST EVER dance competition. omg. it was so much fun. i cant even EXPLAIN to you how exciting it was for her (and for me. oh yes and for me haha). we spent the night at a hotel on friday night, hung out, went to dinner, then went to bed EARLY (best sleep i have gotten since october...) and then up at 6:30am to get ready for a long day.

she had convention classes starting at 8am. hip hop, tap, contemp, and jazz. that was til 2pm and then competition started at 3:30pm.

she stole my heart. just.... swoon. she did so good. i mean, did she make mistakes? of course. did she keep on going? yes. did she smile the whole time? haha no, she had on a thinking face (we'll work on that lol). did she have some 'tude when she needed it? oh yes. were the other "mini" teams all 8 year olds? haha yes. but were the people around me just swooning over the 5-6 yo cuteness? heck yes lol

and she learned so much -- she came home and had a million things that she couldnt wait to do next time. couldnt wait to try out --- things that she told me "thats what the winners did".  and i am more than excited for their next competition on march. i cant wait to see what these kids can do from here on out. their dance is hard. its fast. its something that challenges them - and im lucky to have a studio that does that for my baby.



we werent allowed cameras or video in any of the classes or the competition so IG is all i have :) but its better than nothing. what a weekend for my sweet girl.

here are some extra IGs from the past few days!!