scanxiety.

sometimes i type things out on brain tumor pages or to friends with brain tumor kids that i only wish my own head could grasp.

my heart does. but my head lags in that department. 

i tell people not to worry about scans because nothing changes the outcomes (i do.)
i tell people to let things go and live day to day all of the time bc life can change at an instance (sometimes i fail at this.)
i tell people to trust their intuition (yet i doubt myself, often.)

i don't know if i do say these things so often to people because it helps my own brain lean towards those ideas by the power of persuasion in a way? i dont know.

the week leading up to an MRI, you see everything.

your child walks worse. they talk worse. they blink too much. they don't blink enough. they stare into space. they sleep too much. they don't sleep enough. they look like they might feel sick and aren't telling you. oh, wait, they just have a cold. they used to know something you asked. your child must be losing their memory. you cry in the car more often than normal. you may throw up throughout the day. some days are awesome. you're grateful. then you're not because maybe you should prepare yourself for bad news. what would i do if they told me bad news? i would keep it together with a game plan. i would throw up for days. i could pick myself up and handle it. i would fall apart. i would do what i need to do - because i would have to. the weight of it all is unbearable at times. catch-your-breath-overwhelmingly unbearable. your chest can feel like it almost collapses with one simple thought.

you go to the MRI and you've hyped yourself up for days. everything seems normal - you see doctors and nurses you know and do the same thing you've done two dozen times. weight, height, go over meds, get a gown, impossibly distract your child from needing to eat or drink. you go and wait. this MRI is definitely taking longer than normal. it's because they found something. obviously. well, wait, i guess its not that much longer...

if you are lucky enough for an appointment after, you'll clean yourself up if you've thrown up breakfast in the hospital bathroom and head to a clinic room to wait with your post-anesthesia tired, crabby kid. maybe put on the tv, play on the ipad, chat like normal. you try to answer 17 texts from sweet and curious friends wondering if you have results yet, but after a couple, you feel exhausted all of a sudden. you might be there with your husband or wife. you might be there alone. but waiting is definitely better than going home right away. or maybe its better to just wait for a call - where you can forget things for a few hours. but it doesn't matter because here you are, waiting.

we keep our door cracked because for some reason, i get so hot in that room. i hear oncologists talk to other patients, but only that one and a half second that they open the door to say "good news!" to kids waiting on their own results. i get reminded that we aren't the only people waiting for results - she isn't the only sick kid around. i tell myself to feel blessed. then i need to throw up again. i shut the door.

eventually reese falls back asleep and i wait again. playing on my phone. pretending i am not where i am.

then you hear a quiet knock and the door handle jiggles. 

that next half of a second, your entire life comes to a head. everything you know could come crashing down with the next sentences that you hear.

if you are lucky enough to hear good news, you feel good. 3 more months til the next MRI. you feel good for a month, maybe 2, then it will start all over again.

that. that is scanxiety.

for some reason, i am dwelling on this one. i felt very confident in september - and i have no reason not to feel the same way on monday. yet, i do. we've taken her port out now. maybe i've felt too confident. it all seems too good to be true.

worry is the thief of joy. i know this. so now i am choosing to forget that 2 years ago, this friday, we were told her tumor was growing, that we'd need another brain surgery. i am going to try not to focus 1 year ago when she was in the hospital with some sort of infection that we spent days trying to figure out with such low temps and heart rate. i am going to spend all of my energy praying that the days leading up to christmas are spent at home making craft ornaments and wrapping presents - and not at the hospital w wishes to make it home in time for santa.

praying that, again, reese's tumor is stable. please pray for the same.

this life.

talking to a friend today, after being neurotic, i told her "this life is hard, sometimes."

she reminded me that its hard most of the time.

i forget that our life is different, usually. then some days it hits me.

last night, ej took miller and reese home from the dance studio so i could take aidan and sawyer (and corbs came) to shoot an ad for some back to school minis that i am doing. i was driving home through the neighborhood and saw a guy with his daughter on a bike and asked myself "oh i wonder if that's ej and reese?"

what? 

i don't even know why i would think that. of course its not.

a few weeks ago, we let reese "walk", by herself, incorrectly for a couple of weeks. it was a stupid thing to do, but i was so proud. i took video, i shared it with some friends. but all it did was send us backward with PT. i told ej, "no, we have to boot her more". what was happening was that she was compensating her bad leg with her good leg. trying to balance. and all that did was make the good leg not do what it was supposed to do. so we booted it again (AFO boot) and went on vaca. she didnt have much time for walking on vaca bc we had a stroller or whatever, all of the time. or people carried her around. we got home and i immediately booted.

then i took the boot off and her knee was weak again. this is our fault. she learned the wrong way, was corrected by the boot, relied on the boot, now has to learn, again, how to do it correctly. she is shaky. like she is re-learning.

after talking to (and harassing. im sorry. lol) some friends who are PTs/OTs, they assured me its all normal.

but for 24 hours, i have barely eaten. barely slept. cried a good amount of the day. mainly bc i thought "omg what if it was the tumor..."

i only think things like that because of her "bad arm" - and let me say, "bad arm" is doing so so good. she opens her hand so well and was so proud to show her OT that on tuesday afternoon. and the OT was proud of her as well.

when i am sad and distracted, i literally do nothing all day. there are 3 loads of clean clothes sitting in the living room because i just... can't. i have things to do. editing to do. i need to clean. go to the store. and i just couldn't.

i sat on my hands trying not to call the doctors who would inevitably ask me questions that i already knew had good answers: she feels fine, is acting fine (awesome, actually), doesn't hurt, eating great (probably too much lol), sleeping normal...

i want to feel like i did last week. like i did in destin. what's so nice about the week with lighthouse is that it gives me a "home base". it reminds me of the feelings of hope and faith. feelings i want to get back to when i am anxious. i am reminded that worrying does not one single thing to help our lives. not one. and im reminded that God loves us. and reese. and will protect her.

i have always been given the knowledge and instinct on when to push things. and i have been given signs of "now. now is the time." so i need to trust that God will continue to guide us.  we have been given people, doctors, friends, prayer warriors, in this life - that have helped us along the way.

i hear about little girls who were fine just a few weeks ago - who are now going on their "last vacation" before she is on hospice. i read things on pages and need to remind myself that that is not my child.

this life is hard, sometimes. and today is one of those days that i will pray for peace and drink some wine while reese and aidan are up cuddling and watching a movie in reese's room. normal things for normal sisters.

(and yes, foxy is now home. IG: punkfictionv4)

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.

who i used to be.

aidan came down last week and said her head hurt. i felt her head, slight fever, gave her motrin, and told her to get back to bed and no dance. i checked on her throughout the evening, but otherwise went on with our night.

thats who i used to be.

i used to be the person people called to be talked off the ledge. telling people that fevers or symptoms, etc were "no big deal" and to do simple things to fix them.

i am not that person anymore.

i am MORE nervous when we go to chemo than i was months ago. generally i keep wondering if its still working. i mean, its been months! maybe it doesn't work anymore and no one knows! now, remember, thats not the feeling coming from any doctors what so ever. we get high 5's and "wooohooo"s and no fear of random failure, really. but that doesn't stop me lol

we went to chemo on tuesday - new clinic at children's! (yeah, im excited. get over it. you can order food while doing infusions and waiting for a room and thats pretty much the best lol).
reese finally fell asleep on the table while i played on the web for a while. her port was working fine, but our problem now is that its kind of, erm, crooked. when we were going to start fluids, it didnt draw back and when we were going to have to re-access - it did. so. we started. as long as you can get blood return, its working. ALSO, the IV machine is smart enough to know the pressure is too great as well. (so before you ask, no, there's not a chance chemo "didnt get in" or something lol)

we go to our room ^^^, the port works fine most of the night - and then in the morning, reese was moving around and the IV machine yelled at us. reese started complaining and sure enough - fluids were basically coming out the top. luckily, we didnt need any more fluids, but we DID need to re-access her to heplock her :( i knew this would be horrible.

they numbed it quickly, re-accessed, took sodiums, and de-accessed. by this point, reese was just so upset. it broke my heart. i really havent seen her like that in so long that it killed me. really, the whole evening before, she was upset. she's getting older - so she understands things now that she didnt before. when facetiming EJ, she was crying saying "no doctor, daddy. i wan' go home" - and i pretty much lost it. she stayed awake on tuesday night until she couldnt anymore. and woke up puffy. just tired eyes (like EJ gets ha)...

after de-accessing, we waited for sodiums and papers to leave. reese slept (in her stroller - ready to go) and woke up looking better.

yesterday afternoon, reese said her head hurt. which of course sent me immediately to puke. truly. i called oncology and told them - but reese was only touching the brow bone. they said zyrtec bc she's been congested and boogery for DAYSSSS - so likely sinus. and sure enough - she hasnt mentioned anything since. she has boogers still and itchy eyes, but no more head complaints. (and honestly, her sodium all tues/wed morn was like 143 and then right before we left was 137, so that could have been it, too).

for any other kid, id have assumed sinus. for reese, i can't. an onco told me months ago, when i worried when reese said "ow" and touched her head then, that we have to remember that she is still a kid. a kid who gets sick like normal kids. my entire house was sick this past wkend minus me and reese. the school year germs killed us (mainly EJ. omg poor EJ was so sick...) - so i am not surprised that reese felt it a bit.

but me? i barely ate today bc i was so nervous about things. id see her itchy eye that was bloodshot on one side and think OMG WHAT IS THAT?! (oh, maybe her eye she's been itching). i wonder whats going on in her head. i wonder "is that a bruise?! did i see that before?! did i already mentally note that?!", but then i am reminded that ive already been told that reese's tumor isnt going to come out of her head in the form of a bruise ;) bc ive asked that, of course.

all day i have stared at reese's eyes, doing mental neuro checks and watching her. knowing i don't see anything, but then thinking "maybe i do?!" but no, she's as normal and happy as ever.

when miller sleeps extra long, i do a happy dance. when sawyer falls asleep in the car, i quietly cheer. but i literally count how long reese has slept every day - wondering if 15 mins longer than the day before qualifies for "or if she's sleeping more".... of course it doesn't. they mean like a bit more than a year ago, when reese slept all day. when she slept in the morning in the car, took a 3-4 hour nap, fell asleep in the car in the afternoon, and went to bed by 6-7pm. a 2 hour nap a day does not qualify.

i'm just not the same. and thats okay. i will never be the same, right? like a friend said, when reese calls me from college and tells me she has had headaches, ill demand an MRI. ill never be able to relax 100%. i wish i could. i wish i could be as free thinking as i was a year ago, but thatll never be.

but you know who else ill never be? someone to takes advantage of the day. someone who lets their kids play without joining in. i have played on the floor with blocks more in the past few months than i have in years before. because i have realized how much it matters. i don't edit during the day time unless kids are sleeping - not even just playing quietly - bc i want to BE THERE with them. thats not to say that sometimes i want alone time - or that i dont get on facebook from my phone while watching mickey's clubhouse, but we sing a lot more songs. read a lot more books. live a lot more life than who i used to be....

i have friends who i love and text and message and cry with about things that i didnt even understand a year ago. i am grateful for so much more. i feel so much more. sometimes i wish that i didn't, but that doesn't change the fact that i do. i dont want to be numb.

NOW let me update on the awesome things!!!

1. reese had her first PPCD screener :) it was so great. it was, first of all, amazing for her to be around people who chatted with her like they understood everything she said. ;)

2. soccer has started. so saturdays are filled with 2 games almost every wkend.

3. my bro/sil had their 2nd baby - a BOY!! reese and i went up on tuesday morning, to see them, and she was smitten within minutes. good thing she's getting her own little baby this xmas.

4. which, btw, we are naming Corbin Rose. and here is why....

5. school has been going great for AS and M. i knew that aidan would continue to love school. but im glad sawyer and miller do as well. makes me day easier knowing they are happy. reese and i took our alone time the other day to go for a walk. it was so nice.

so. yeah. who wants a prayer list?! :) for our friend phoebe, for the family of 80, for our newest friend jaycee, who just found out 2 weeks or so ago that she has leukemia. that entire transition period is so hard. and for reese, that she continues to heal, that she feels better every day, that the tumor keeps shrinking, and that random things are just random things - and nothing bigger.

and that i can handle waiting til october 17th for our next MRI.

i love you guys so much and i feel the prayers. please share them with our friends tonight, too.

a little request.

i need something.

i need some prayers for peace.

i am exhausted, recently, from worry. 3 months between MRIs is too long... for me.

i realize that they changed it from 2 months to 3 months because reese is doing so awesome.

but then i stare at her eyes and think something may be wrong. for no reason other than, why not?

in my head, you can't be PROGRESSING but have a bigger tumor in your head. impossible. but even then, i don't know if i believe myself.

her hand opens more often. with help and on its own.
she rocks the walker at PT and we're on our way to getting her one for home.
she talks ::faint:: awesomely. someone actually complimented her speech the other day //heartswell
she is learning things she never knew - like animal sounds, etc. i add more a few times a week and she's like a sponge with it all.
she tells stories.
she is more aware of things - like jokes, how she makes people feel (like she knows she's being funny), different tones of voice, etc.

if you know me - this isn't really like me. i spent months and months feeling... okay. there's just so many hormones in my body i think haha

its hard for me to believe that people regularly get good MRIs. i feel like there has to be a setback. is july 17th my setback? i don't know why i think this because i know, in my heart, its not true...

anyway, so thats about it. prayers that i CHILL THE HECK OUT! and also, of course, for reesey ;)

love you guys. knowing that i can put out this request at all makes me feel better.

instagram has vid now - so come watch reese giggle, WALK, and play with her sisters :) - punkfictionv4