time passes.

time passes and we are still doing the same thing. i realized i had not blogged in a few weeks and i thought "well so much has happened..."

but really, no. an ER fever trip here, a dance competition there. trips to ikea or to chemo. and while all very significant, each moment important by itself, and in line with our daily lives, its like time just whisks by and i move on to the next thing without much appreciation for what was.

i sat down to look at the photos i had taken over the past few weeks. so many wonderful moments that i rarely even edited. i don't know if i am just not motivated right now, but it just felt tasking. then tonight, i felt the need to get it all done. i am overwhelmed with other things and editing and uploading each photo felt like a check mark on a to-do list.



we had one trip to the ER a week ago sunday. "raging ear infection" is what they said. aidan came with, per reese's request. she is such an angel to her sister. reese asks for aidan when she's sad and they have a very special bond.

i watched aidan shine this weekend at her dance competition. i told her we weren't getting a hotel and were just going to drive in early and she nearly lost her mind on that idea (lol). her favorite thing is to get a hotel and just spend the night with me. no one else. and so, with some help of a friend, we got a quick room across the street from convention/competition and we got to just relax and play.



i love watching her do all of her dances. i love watching her try her hardest at convention. they won 3 golds and 1st place for junior small group (their tap). i am so proud of the girl that she has become. her heart is bigger than life.



miller turns 3 this week and that seems mind-boggling to me in a few ways. 1. how has it been 3 years? and 2. i feel like she's been a 3 year old for 18 months haha

she is funny. she is sassy. she is smart. beyond smart. she talks so much. and she is reese's bff.


but tonight, reese is in sawyer's room. reese went to bed alone and then came out of her room only to be scooped up by the whispers of "tell mom you want to come in here...". i say okay and know the almost immediately, reese will be snug as a bug in sawyer's bed with her dozens of blankets. sawyer shares her "chloe" and reese will feel totally safe.




writing this blog has lifted my stress-filled heart. because none of the things i was worried about matter. corbin took her first REAL steps today. not stumbles that ended up with a lean forward, but meaningful steps toward her sister. tomorrow, we will have school, ill make dinner, we'll go to dance. another day will pass with moments that seem insignificant at the time, but as time passes, and i look back, its easy to see that each second has a purpose.


my goal for this week is to take note. to remember that the love that the girls have for each other is compounding and important with every breath. that every errand we do, every chemo we go to, every hug that we squeeze. its all intertwined into our story. nothing left out. and that the stress of each day should leave with the morning and not return.

because "miller, wash my back?" will only be said for so long.

already rolling.

i woke up between 4-430am on friday morning. i got my clothes on, fixed my makeup and hair, and picked out reese's outfit. i got her socks, boot, and shoes together and pre-made her meds. i went back to the bed (she was sleeping in ours, of course), and she had found her way under EJ's back.

she looked so small.

"reesey... wanna get out of bed?" with those words, she popped up like a poptart and we got ready for the day. "i say bye to my daddy?" of course. she went back, kissed him goodbye, and we were on our way to the hospital.

i put on fun music on in the car, but she was obviously tired. we walked in together, only to get in line for the 5:30am check in. then we have another check in at 6am. then taken back for surgery at 7:30am. reese knows the routine. she no longer complains about not having a drink anymore. she hops on the scale and holds her arm out for her blood pressure to be taken.


i signed all of the paper work, we watched some tv, and then she got her versed/pre-meds and then gave me kisses goodbye. "i go do my bubblegum!" which is the mask that smells like bubblegum and puts her to sleep.

the next time i saw her, in the PACU, still sleeping heavily, she wasn't the same as she went in. she had a port again - very close to the same spot. i was happy about that because she mentioned it going there - so there weren't any surprises.


they gave her pain meds while waking up and so she fell asleep for a few hours, while we went to grab food and wait upstairs in clinic.

after a few hours, it was chemo time. vinblastine in. hopefully tumor going out.


we scheduled a month's worth of chemo appointments and we were on our way.

yesterday, though, she had just 99 fever all day. she felt so.much.warmer than that, but after several hours, we finally said that we were going to run to legacy because she felt so crappy. the last thing i wanted was some sort of port infection or whatever. she was a bit emotional. putting the numbing cream on her port site triggered a bit of tears. just... sad. "i wan' go home and see my daddy..." and it broke my heart. we will be in the swing of things, again, i hope. she got her rocephin and we went home. all was well. and today she feels great. much more normal reesey.


i get a lot of questions on FB and IG about tumor size - or how much it changed from sept to dec, etc - so i wanted to show you some screenshots, here. she has come a long way. amazing doctors, skillful surgeons, modern medicine, and prayers


reese may have these scars on the outside, but on the inside, she is my brave, sweet girl. laughing through most everything that comes her way.

growing up.

this is a busy week. we had reese's teachers come over on monday to visit before school. ive never seen her giggle for that long. literally the whole time they were here. tuesday was "meet the teacher" for her - which meant we brought supplies in and said hello. she got the warmest welcome as she pushed that walker through the door. she had on fake purple glasses, a top knot headband, her rainbow shirt, and cut off lace shorts. just so her. and when i remembered that these are the things she picked out. the ensemble she put together, i realized how much she has grown up.

sunday night i said to EJ, "i bet she has a fever. i can tell." he rolled his eyes, got the thermometer, then made the "damn, you're right" face lol

100.

not even a fever for most, but reese's natural temperature is lower than most (tumor location, mainly), and i didnt want it to possibly go higher and us have to leave for the ER even later than it was. she responds like normal - "can we go to the dr to get you some med meds?" "yah. but not my port!"

sigh.

she walks in w me using her walker. no stroller. i don't carry her. i carry my sonic drink - because we obviously stopped for cheese-cheese before we got there ;)

it was a longer night than i expected. i knew that the fever was just something going around our house - i mean, sawyer had a fever only days before. and since then, actually, miller had up to 102.5 and aidan had a low-grade fever. it is just what was floating around here. she sticks her arm out for blood pressure and smiles at the nurses. she made the dr bribe her with stickers before chatting w him, though.

we had to get a "clean catch" on urine to test for UTI so we shuffled our way to the bathroom with a cup. we came back to the room and waited until we [finally] got some emla cream for her port.

she is strong now. after the 30 mins w cream on, they came in with their gloves and accessing stuff. she watched. she surprisingly put a mask on. then we put one on foxy.

when it was time to access her, she tried to kick her legs so we had to hold her legs down.


"im stuck in mud! im stuck in mud!" and my heart broke.

thats from super why. "jasper's cowboy wish". which we have seen three dozen times. jasper has to be a hero and save the horse from the mud. we play "stuck in mud" all the time at home. and we save reese from "the mud" as she is stuck on all 4's on the floor.

but she was just crying. she couldn't move.

we were done in a flash, but i couldn't seem to get her to understand we weren't staying. i told her a dozen times that we weren't sleeping there. we were sleeping at home. port out. bandaid on. she wouldn't even lay down to relax.

"stop your talking, mommy!"

lol so that didn't work.

within a few mins, she settled down. i went to get her a snack and she facetimed EJ. eventually she got it. and in reality, i assume she just thought i was lying. i've told her a dozen times before "meds in. port out." but the length of times have varied. antibiotics, chemo... it just depends. and that's my fault, i suppose.

but now she's older. now she understands more.

so now she goes to school. every day. only this year she gets full day 3x a week. what an absolute blessing. not only will this help with her endurance, and pretty much all things PT, but will get her so much more ready for kindergarten next year. she's learning her letters and numbers. figuring out sounds, recognizing them, and counting. things that i was not even thinking about almost 2 years ago when this all began.

i am just so proud.

the rest of the week consists of more "meet the teachers", play dates, sleepovers, and celebrating our 7th wedding anniversary which is next monday. which is also the first day of school, of course.

since reese will be in school on fridays, i want to join a MOPS group. as a friend said, "only you would find free time and then try to fill it up..."

i am spending today organizing more of the "back to school" portions of the house and im really geeked out about starting this year.

this one is different. this is going to be a good year. a normal year.

...whatever that means.

new memories.

the last 2 weeks or so have been so busy. right after the MRI, reese had an ear infection.

its funny bc i was just talking, on MRI night, to another brain tumor mom - and we had said we deserve "just an ear infection" lol since everything is so much bigger for us. its never "just" anything. but that wkend it was. and let me say - if i hadnt had an MRI on wednesday, i would have been absolutely (more) insane for the way she was acting.

even so, she slept the day away on friday and i called the onc nurses asking "is this normal?!?!" as if i am a first time mom. but her counts had already dropped and we expected fever. which she got friday night. EJ took her in, they did a chest x-ray to count out pneumonia (she had a cough, too), and then started up meds. when i got there saturday evening, she only felt a bit better. we swapped for the night and BOOM - sunday morning was a happy girl :D

we spent last week running around to different appointments, liken normal. PT, OT, labs... we got her sized for a new AFO boot and also got her... walker!! :))))


it'll be easier when she has her boot to brace her foot, but she really does think its nifty. for those looking, this is a rifton pacer. in hot pink. ;)

the rest of the week was pretty "normal". it was spirit week at school for A and S, dance classes, running errands, and then on friday aidan got "mav of the month" for her class - so we went up and cheered for her. :)

THEN yesterday, we went to the pumpkin patch. last year, we had a sick baby. it was so weird bc i remember wanting so badly to DO those halloween things bc i had this weird feeling that i'd regret it. i can't explain it. this year, i just couldnt wait for her to have the fun that i knew she'd have. and she did. as you can see, still a daddy's girl. but this year they actually picked out pumpkins (that she has been carrying around and even sleeping with lol).  all the kids had a blast. until i tried to get them to take a pic together. snort. maybe next year.

next up: costumes, praying for NO RAIN on halloween for scare on the square and ToTing, and gearing up for in-patient chemo again the first week of november.