who i was that instant.

i don't know why i took this picture. or what makes me compelled to show it to you now. this was november 1, 2012, i believe. namely by the shirt. by the no make up. the way my hair looks. and when i look at the image order, it can't be any later than the 2nd. i wish i could see what time i took this. in the light of the ICU communal bathroom, it could be any time of day or night. no one up on C11 feels the need to care about time, though, really. it all just blends together in waves of tears or smiles.

reese has carried around our old iPhone3 for a while, but we haven't been able to charge it up since that was the reason i got a new phone the day after christmas 2012. but today, it charged. i had not really even thought about what was on it. sawyer said something about "which baby is this...?" when looking and i realized that there were images i never shared, don't remember. videos that instagram didn't have the capability of sending out to thousands of people, back then. videos that only i saw. or that EJ had sent me and i saved to my phone.

i don't really remember reese the way she looked in most of these photos. i don't really remember myself this way. part of those first 48 hours are etched into my brain vividly, but the other parts just weave through my memory like a cloud  sometimes heavy, sometimes light. i looked at the photos from september... october... reese younger than miller is now. so different. she had no words, really. a few, but nothing that stood out. maybe a phrase or two. she didn't look completely healthy, but not sick. sort of distant, i guess, in some photos. i saw photos in november of her head swelling up top, the a dozen neurosurgeons surrounding her bed, her own private entourage. i saw photos of being at home with her sisters in december 2012 - photos too blurry to post on IG, but still too amazing to delete. videos of sisters saying "hi" to reese and of stacking blocks on the floor.

more than two years later, it seems as if we are such different people, but we're not, really. each sister the same personality as they were. each relationship entwined together by a common string.

some days, i still feel like that girl in the photo above. i feel like I'm drowning in worry. like tears could wipe away my makeup of the day. so empty.

but that is not often. i am more often completely filled. yet there are times when bits and pieces of myself are torn away, some days, when i read about others' chemo not working, about sweet babies passing away after following for months or years.  in that instant, my heart could be ripped from my chest from sadness, from worry and fear.

reese's first vinblastine MRI is in about 2 weeks. march 3. which means for the next two weeks, ill think her shoe catching on the carpet means she can't walk well anymore. i'll think her dropping something means her bad arm isn't working. i'll be continually researching what the next thing may be - all the while, hoping that the next thing is just staying with what we are doing. and praying that it works. i want to hear the words "well, good news!" the second that the oncologist walks through the door into the treatment room - or when i pick up my cell later that day. whichever the case may be.

that photo was me for that second. i wanted to remember what grief looks like. what a mother who was only recently told "she has a brain tumor" looks like. but its amazing how it is not me 2 years later. different pieces make up the puzzle. different strings weave the days together.

this is me and reese now. i can't look at my life, daily, and not smile. i've always felt blessed. felt as if God has given me the world with my family, but that feeling compounds everyday. i pray my days are always filled with photos like this one.



IG: www.instagram.com/theskelteseven

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.

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.

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.

if i am being honest.

reese woke up with the crud yesterday morning. by 4am this morning, she had a fever. 101.1 and then 100. and then after i took a shower to get ready to go to the hospital, it was 99.

but i volunteered to go. i got my hospital comfy clothes on. i put on my green sweatshirt that reese always says "oooh i wanna cuddle dat shirt!" and off we went.  i knew that if we didn't just go then, we'd end up in the ER later so we talked about just getting it over with and finishing the rest of our day.

there is something so familiar about this routine. something comforting. we didn't go downtown because there was no risk of having to stay the night. we just went to legacy (the children's satellite hospital up north). but we dont know people there. they don't know reese. i am just another mom who comes in, but still it feels comforting to be there.

i told a friend last night that "i am caught between a state of happy and lost". for so long my identity has been the mother of reese, the child with a brain tumor. as reese's hair grows in, fewer people stare.  the questions are becoming less and less... and all of that comes with great relief to me. as well as paralyzing fear of change. what i once called my new normal became so normal - that i am in the same cycle that i was at the beginning, as far as adjusting.

this cycle is different because, for now, its not surrounded by gut wrenching fear. its not wrapped in tears of sadness and fear of loss of a child. its just... a change.

i want to be clear, this change is more than welcome. but, as i am always trying to be honest, i am simply stating that it's hard.

i miss the people. i miss talking to the doctors and laughing w nurses. i miss running into oncology mom friends. it is a different kind of connection than i get from most people and its that that i miss, at times. i miss the routine i had with just reese. her sleeping on me in the bed, uncomfortably, of course, but it was what we did. we lived there. weeks at a time in some instances.

when you go down to the oncology floor, for the first time, there is a binder. a social worker/oncology liaison sort of walks you through things, but in this binder there's a part about the after treatment. it explains that you will likely feel this way and even at the beginning, i knew they were right. originally, leaving ICU and going to the floor was hard. i was elated that reese felt well enough to do that, but longed for those people who cared about her so deeply that first month. then i moved on to the oncology family that grew each chemo inpatient. so many people whose jobs are to save my child - and yet don't make it feel like a job at all.

each new step towards health is one more step away from that normal. after reese has her MRI on september 15th, we are possibly one step closer to talking about port removal. which is a very big step, to me. you don't go in monthly anymore for port flushes. you don't go in for fevers because, at that point, you are now "normal enough" to just go to your regular doctor. the fear that something implanted in your body thats infected - is gone.

you trust strangers with your whole heart. and soon, they are no longer strangers. the same goes, i suppose, for my words on this page. strangers came to lift me up - and then one day, they were not strangers anymore.

september is childhood cancer awareness month. i am aware. you are all aware. there is nothing more in this world that i would want than to never look back. to never be in the place we were almost 2 years ago... 1 year ago... i want every day to be better than the one before. but we were there - and so many are. every day 42-46 more children are diagnosed. every single day.

none of those people know that one day they will miss the comfort of the lull of beeps from an IV pole. the beeps symbolizing that something is in your child's body is killing bad cells. that you're actively doing something. the beeps that alert nurses that chemo is done can lift a heavy heart with hope. it is hard to be off treatment and wonder. that part of the change is the worst.

but i am happy to be "amanda, ya know, that mom with the 5 girls". not the mom whose daughter has a brain tumor. for now, its nice to feel just like everyone else.

our daily routine has been filled with drop offs, laundry, the gym, cleaning, pick ups, cooking... rarely now is there "doctor".

but sometimes, when there is the option on which parent has to go back to that other normal. the one with ports and blood and hospital rooms and IV pole beeps...

...i volunteer.

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.

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)


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.



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.



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.



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.



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.