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.

the same normal.

i feel good.

we had our appointment today to talk about what we are doing next. 

vinblastine. 

so we need a few things to start. one of them is a new port. 

i know. that part sucks, but its a necessary evil. 

before that, we need a rapid MRI (ish) to check where they should put the port (because this is her third. if you remember, she had that one that really didnt work and we replaced it spring 2013). and then we'll have port placement surgery.

chemo will be weekly, for a year. its a quick push so its access, blood, chemo, flush, and lock. i might be missing a step. its been a few months... 

a few questions, answered: she will likely not lose her hair, her ANC shouldn't really drop ( I could totally have that wrong, but i guess i'll know soon haha ***eta: ok there's a possibility for ANC drop. we will know the first 6w how her body reacts.), she should feel pretty good and stay on her school schedule. there's no inpatient stay for chemo, there's no fluids to mess w sodiums. its a lot like vincristine was given. no, she does not need surgery to remove more, as it stands. no, we are not doing radiation right now. yes, it is an option later down the road if needed after this or other chemo protocols. 

we saw the MRI from september and then from monday. you can eyeball the growth, but its not a lot. is it moving in the wrong direction, yes. so we have to change that. they did say that if it was just left, it would likely be months before we even saw new symptoms of it. of course we aren't leaving it be - but that is interesting to note, imo. 

i saw the first MRI today, too. i think the only time that i have viewed that scan was when we sat down with the neurosurgeon day 2. the second day of our entire journey. its so big and just goes from the optic pathway and then through the side by the hypothalamus, but now it seems all thats left is the piece in between where we had both surgeries. i think it was important to see all of those scans to get grounded - to see how far we have come and to see what we are dealing with. 

our wonderful oncologist gave us lots of whispers of hope and words of confidence. we are very lucky to have the amazing doctors  that we do. 

i mentioned to the girls today about reese's new port. reese shrugged and said "yep. i need a new one!" and aidan and sawyer were just interested in coming to chemo w us at some point. there were a lot of comments on the girls being upset, but i think the difference is that this is just what they know. chemo, the port, hospital stays... it's all part of fixing reese. and so they seem to be totally okay with that. reese doesn't quite understand, but so far so good. taking her in every week will become dramatic, i imagine, as she is old enough to grasp "what we do every tuesday..." or whatever day. but until then, we'll take it step by step. 

a bump in the road that leads us to the end. our new end seems to be in 2016. 

please do not hesitate to ask me any q's you may have. 

the prayers for guidance and peace have been felt deep into my heart and soul over the past few days. and thank you to everyone who has purchased their reesey shirts!! 

it is amazing how different this was. we went to the hospital today saying hi to friends. everyone couldnt get over reese's hair and how she was walking by herself. i wasn't nervous to hear what the onc said because i know him. we trust him. all of these doctors saved reese several times before - so now is no different. 

2 years ago today, i was watching reese eat dinner after having her 2nd debulk surgery that morning.

and then this week, she goes to christmas parties (miller's) and makes me crazy with her sisters around the house. :) 

i will take it. i will take every single second.

we are still in the same normal, though. for now.

full circle.

 november 2nd, 2012, we told reese we loved her. we gave her kisses. the nurse warned us that her pre-meds would wear off soon, so to say we'll see her later and go quickly. we turned around, walked down the hall towards the elevators, and collapsed into each other's arms. we collected ourselves as best as we could and headed to the OR waiting room. first up was waiting for the general surgeon to come tell us how him putting an external central line went. they took us to a room and his sweet face, who we'd signed paperwork with before, explaining the risks of that tiny part of her hours long brain surgery, told us that all went well.

today, that same surgeon, who i havent seen at any point in between, took her port out. we sat in a similar small room as he said all went perfectly,  to see a doctor in a month to make sure it healed properly, he shook my hand at the end of a journey - instead of shaking my hand to welcome me to a nightmare.

when we were figuring out a date for port removal - the first available looked like halloween. i gave excuses about that sort of being a damper on the whole fun evening. which is true. but in reality, it was just too much for me. i asked him to look at other surgeons' schedules and he called me back with today's date.

im sitting in bed right now with a new reese. one that doesn't have to go to the ER for a 100 fever. who i give tylenol to, like the other kids. she demanded dance tonight. there was not one question on if she would just sit w me while miller took their class. and when watching her tonight, it was like she had no surgery today at all. she pulled down the top of her leotard for older girls that she looks up to and said "see? its out."

i don't forget that i do not know what the future holds. i dont pretend to think that we still dont have battles ahead of us. i am hopeful for reese's future. i look at her and am amazed. we talk about kindergarten and what services we'll be looking for, what we will want her IEP to say, what classes we want to be inclusive, if she'll get any spec ed or not. i can't picture her with longer hair, but every millimeter it grows is one more chunk of time that spaces me out from the bald beauty that i once knew.

it seems so far behind us...

...but its not. its right at our back door. i just pray it never knocks. 

IG: punkfictionv4

alienated.

i am not angry. 

i am just not. i was devastated at diagnosis. i was overwhelmed when chemo started its new normal in our lives. i have been annoyed with comparisons to others. i have been in bad moods. i have wanted to tell people to shove it. i have cried more than my fair share. i have vented to friends more often than they probably would like.

but i have not been angry.

there are times when i have felt as if not many people understood, nor currently understand, things about our daily lives, but they try. they ask questions, friends offer any sort of piece of relational conversation they can. and i am grateful that they choose to try. what a lonely life i would lead without those people.

i have friends who try not to mention their daily struggles because "ugh i know it doesn't compare". i remind them that its okay. everyone has problems. everyone has a sick kid sometimes. and while they may not end up in the ER at 4am bc of a 100deg fever, its still annoying for them. someone still has to miss work. someone is still up cuddling in the middle of the night.

i enjoy the normalcy of those around me. i enjoy the monotonous days. i enjoy the busy cycle that we keep ourselves in to be able to let the kids do all the extra currics that they want to enjoy. it doesn't bother me that reese is in the 2-3 year old dance class and not the 3-4 year olds. she's walking and playing and enjoying herself, right? i dont feel robbed. i dont feel as if she has been robbed of something.

and i am not angry.

she can't play soccer next year, i bet.
there's a chance she's not ready for kindy and stays behind or takes it twice, maybe.
who knows the effects that chemo will have on her later. will she be able to have kids? what other side effects will take their toll later in life that we'll blame on 16 months of high dose chemo?
she may be super short. or have to take growth hormones. or maybe just short (like really short) because we wont do them. who knows. that decision isn't for now.
she doesn't have "friends", per se. she has a lot of people she loves. people she begs to see and enjoys seeing all the time, but they aren't 4 year olds. they are, on average, 30 years older than that. "she gon' come play wit me?!" when i say my friend(s) are coming by. and thats okay. she loves her classmates, but names her teachers as her "friends".

but i guess its okay because id rather have her here. in any which way i can have her. so whether thats with a short, non-sport playing, adopting mother - then ok.

i say all of this because i generally feel like a total asshole on some of these brain tumor/cancer/mom pages. like the only one who isn't so angry of the things she is "robbed of!" i am not angry at things people say to me out of wanting to relate. i do not get mad when people "look on the bright side", but maybe thats because i do, too. i never know if what i am going to type to some people is going to make them angrier.

i think about how,  before her brain tumor and chemo, i didn't know, for fact, what her life would bring. so how can i be angry at those things she may lose? maybe she'd want to adopt children? or marry a man with some of his own? maybe soccer is something she'll hate. maybe her lifelong best friend will be in that 2nd kindy class, if she needed it.

but instead, i think about that limp body on halloween 2012. the girl who barely woke up. and then i look at her today. 

sunday afternoon, EJ ran miller to children's legacy ER bc she was breathing labored and has a horrible cough. they said it only sounded a tiny bit "in her chest", but her HR was high - so they did an IV (she didn't cry) and gave her a bolus of fluids. that didn't really help so they did a chest xray (all clear) and then was sent hom with high dose abx for whatever she has plus a found ear infection.

but EJ and miller facetimed us. reese chatted for a min with miller and then i got the phone and sat w aidan. miller held up her IV arm and aidan had to leave the room. she just burst into tears. i called her back to talk about it. "she's sick. i dont want her sick. and i dont want her sick like reesey." reese heard this and hollered from the other room "huh?! i not sick!!"

and that's true. even a 4 year old can see her own potential and purpose in the world.

we all chatted about how reese is not miller. is not aidan. sawyer. corbin. any of us.

this week has been so great. got a call for port removal oct 15th.

almost 2 years. 

2 years ago, october was hectic. toting around a sick 2.5 year old with seemingly no reason to vomit. doctors... home... ER... home.

i am grateful for how far we have come, so much we have learned, and for this peaceful time in our lives, right now. no matter what comes in our future, i am grateful for the now.

no one can tell you how to feel when your child is dx with something life threatening. no one gets to tell you how to feel. that power is within yourself. no feeling is right or wrong. no feeling is better than others. but sometimes i feel a bit alone with mine.

high priority.

one day i want to ask the doctors what they thought about reese when she first came to the hospital in 2012.

brain tumor friends of mine have stories of dizzy spells. of headaches. stories that are terrible, but then they went home after that, until a plan was made.

but not reese. her heart rate was in the 40s... 30's... 40's... back and forth. the pressure in her head so high. the vomiting. we knew, but we didn't know. how many days we spent back and forth to ERs wanting answers.

i wonder what they said when they saw her. or after the first MRI. we were high priority. rushed downtown from baylor frisco in the ambulance. then whisked to the ICU, where we'd live for a month. she was delicate. her case was delicate. everyone we ran into knew. she impressed us all over months of healing. more brain surgeries. the DI. so much chemo. maybe it was all old hat for them. maybe everyone had the same hope for the future that we did - but sometimes i wonder if they thought the worst and they surprised them.

today reese had an MRI - her second MRI after chemo. she had one right before finishing protocol in april, one in june, and now september.

we got there this morning and reese started to meow at the MRI nurses. who meow'd back at her. then she ran around trying to scare them. she laughed so hard. and someone remind me to get her "shhhh tiptoe" walking on video. its awesome.

ej and i went to go eat lunch. i was not as nervous as normal, at this point. i watch her every day - her walk, her bad arm, her eyes. and i felt okay. but as we later waited in the clinic room, i could hear my heartbeat in my ears. i thought i was going to pass out. the height of the possible fall sat on my chest like a weight.

everything is stable.

the oncologist mentioned how there are still things that light up on the MRI, as we all know, she still has tumor in there. but its not doing anything - so stable is the best word we can hear.

but then things went a different direction. a direction that i knew would come eventually.

do you want to have her port taken out?

2 MRIs is the "rule". and by "rule" i mean what they tend to do. but whatever we were comfortable with. i just put my face in my hands and told him to decide. not EJ (lol), but the oncologist. i felt like everything i said would sway my thoughts on her tumor in general. if i said yes, its like i was taunting it. if i said no, i was just waiting for it to grow.

he said to go ahead and get it taken out.

this is huge. this meant that if she gets sick... a fever... we stay at home. or we go to a pediatrician, if we so choose. they will obviously be there for me - for questions, for things that i am concerned about MORE than the pediatrician would know or even understand. they are some of the only people who do understand - and they know that.

her next MRI will be in december. but, for this MRI, no news is good news. her MRI will be mon, tues, or wed, likely... but then a check up appointment that thursday. so if we don't hear anything in those days, then we are to believe that the thursday appointment was full of high 5's and more stable.

also, thursdays would be our new clinic days. thursdays are for the people who aren't "high priority" anymore. for those who are more... after. we aren't pushing poles down the hallway. we arent rushed to the ER. we aren't crying in the hallways.

...hopefully ever again. 

but today i cried. they are talking about these wonderful things and i cried. it was so much to take in. so much good to take in. but all of it has to be swallowed with such hope. all of the celebration is intertwined with possibility of sadness that simply has to be pushed to the side by faith.

so this is the fall we deserve. this is the fall that we had in 2011. what i thought we'd have in 2012. what we almost had in 2013. school, cool weather, pumpkins, baking, crafts, holiday events, family parties... none of this, hopefully, overshadowed by spots on an MRI.

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.