Early May.

Turns out - while I was trying not to think about what reese would possibly look like when she was older, while she was sitting a hospital bed years ago, she would end up looking just like herself only slightly (slightly) bigger. lol.

Only now, almost 4 years after we had to pull so many of her teeth because of chemo, reese is getting a front tooth in.

I almost cannot handle it. When she talks, that little white nub peeks out and I get all weak in the knees thinking of how long it has been since I have seen a tooth in that vampire smile.

Age 7 is old. Like, it isn't a baby or a toddler. It isn't a preschooler or someone entering school and beginning a journey.. it's a kid. A kid who is going to be in 2nd grade. A kid who is trying to manage learning and social skills, learning math and choosing things to do during recess. A kid who is just happy to get a front tooth.

Reese's favorite things on earth are going to dinner (pizza or mexican) and hanging with her family. We were going to do a party, but she wanted OTB and bowling with the fam and so thats what we shall do.

She sleeps with me any time EJ is out of town. She sneaks you by saying "can we have cuddle time?" and of course you say yes, but she means IN YOUR BED TONIGHT WITH YOU RIGHT ON TOP OF YOU?! and still... the answer is yes ;)

She writes/draws/colors all the time. She wants very badly to be better at sounding out words to write them and so thats what we work on at home. She likes to write people notes or make books for Foxy.

Foxy is still her BFF. That being said, watching her with her girlfriends at school is such a treat. They are all so silly and fun and Reese is just so happy to have little jokes with everyone.

Reese also has a "family" with Foxy. She will say "wanna be in my family? because in Foxy's family, you never have to do dishes or laundry and you can drink wine and take a nap" (sounds amazing, right? lol). She tells us all the fun things her family does (that family also has troublesome "little boys" that don't even deserve names hahaha). Her imagination is just so fantastic. I could listen to the stories she tells for hours.

...and sometimes I do when she wakes up and wants to chat when I am heading to bed haha.

Her favorite colors are orange and pink. She wants to play soccer again in the fall if possible. She is going to join brownies with her friends. She likes wearing joggers with pockets best. All 3 of her laylees/blankies are different and she can tell which is which by feeling them between her fingers.

When she gets riled up about something she "can't calm down!!" because she's such an emotional soul. Her happiness all of life is paralleled to how she can get her feelings hurt, too. I will gladly take the cuddle after, though.

She doesn't wear her boot much anymore. She seems to have learned to pick her foot up more so when she is running - not that the rubber doesn't get caught and trip her sometimes, but we will see. She is having so much fun wearing different types of shoes and thats a small milestone, too.

I am desperately counting down to the end of the school year for my elementary kiddos. It.Is.Time.

I don't want to make anyone's lunch anymore (even though at this point, it is just Reese's, usually - and then M and C's 2 days a week). I don't want to wake up at 6am anymore. I don't want to sit in a parking lot waiting for kids anymore. I want it to be summer where we wake up, leisurely eat, go to the gym and then swim. I want to come home and eat lunch and take naps and then go to dance. Then I want to stay up late and do it all over again.

The rest of the year, in the next 2-3 weeks, we have field day, school talent show, more dance company try outs, picture day for recital, then all of the recital things - including recital memorial day weekend.

To see Aidan as Annie, and then the rest of the brood throughout the show in like 10 other dances (lol), is going to be damn magic. They have all worked so hard and to see it come to life is just going to be such a proud moment as a mom.

STAAR testing is done, GT classes are done next week, all the things are done except for actual school, though. Which is making me want to crawl into a hole lol

I am going to go think about how this baby here, turned into that big girl. Right before my eyes.

Dear Reese,

I love you. I love you every second of the day. You teach me patience and kindness and how to love in any sort of situation. Thank you for being you, for teaching everyone around you that life is something to treasure and to make every day a happy one. Thank you for saying "today is beautiful out!" or reminding me that the sun feels nice. I will never get sick of seeing your face when I pick you up from school - and you jog over to throw a paper in my face and see my pride in your most even basic work. I will never not want to have cuddle time in my bed. I will never be sick of waking up to your sweet voice asking if I "had a good sleep?" or if you can go wake Foxy up. I would keep you home from school everyday just to hang out, if I could (honestly, I would do that with all your sisters, but alas). Thank you for all the years of that gummy vampire smile - and thank you for the years to come with those goofy front teeth. I love you.

Love, Mommy.

round again.

Scanxiety is a little different now.

Reese's MRI is in 2 weeks - Tuesday the 27th. We go to the pavilion at Children's this time because they are doing something at the main radiation spot. I already am annoyed that things are "different" than usual, but for MRIs at the pavilion, I can be with her till she goes to sleep. That being said, she doesn't care about that because she loves the gas mask. Also, the last time that I did an MRI at the pavilion was December 2012, before her 2nd surgery.

I don't really worry about the MRI the same way as I used to. I have heard it all, now, and am vaguely prepared for most of it. I have spent almost 3 years now educating myself on protocols, mutations, surgeries, laser options, timing and speed of growth, and so forth. I have spent months hearing "shrinkage". I have heard "stable" for a long time. I have heard "growth" as well as "looks stable ish" throughout the past year. Really, I just want to hear what they have to say. I am almost counting down the days to the MRI because I want to know what the plan is. The plan may be as it has since January.  I hope so, anyway. But if it is not, we will move on - and Reese has been practicing swallowing pills in case we move to dabrafanib.

Yesterday, she lost her first tooth. Whoa...

We had all been wiggling this tooth for weeks. I was in disbelief, honestly, that she was old enough to lose her first tooth. I am downright giggly to tell her doctors. I don't know if they thought she'd make it to the age where she could lose a tooth, 3 years ago. But last night the tooth fairy came and this morning was magical. Then I got an email from her teacher on how the entire class was excited for her... the whole day melted my heart. Reese told me that one of her friends chose her for "eat lunch with a friend" and I cried. I legit sat there and cried happy tears that she is so loved.

Things are so normal and not normal at the same time. This is how I always thought my life would be  - taking kids to school and preschool and another kid at home. Going to dance and soccer and meetings and girls night out. But, then on mondays/tuesdays, depending on the week, we have to stop that normal life and head to chemo. I am still that mom that talks about things that makes everyone halt for a second to hear "oh, sorry, my daughter has a brain tumor" because otherwise the story doesn't make sense. All of this is okay. I understand that the journey we are on is years long. Years past today. That is okay, too.

As we approach 3 years, I think about how far we, as a family, have come... grown... sticked together. All of it is okay.

IG: www.instagram.com/theskelteseven
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pre-thanksgiving.

It has been too long since I have blogged. Fall photography gets me buried on my computer under other people's families and not my own. which is okay. It all ends this wkend and I will be able to bother my own kids with the camera more.

Things are going as they should be. My anxiety is on high alert as we count down to dec 15th - reese's MRI. that is a monday. we dont want them to call us at all. our appointment to "talk about the MRI" is thursday. kids who are not on high alert anymore have to wait, i guess, for info. but, of course, if something was wrong, then they'd tell us immediately. i will barely eat those few days, but in the end, i pray that we have a huge celebratory "8 months out of chemo and still stable!" dinner.

reese turned 4.5. which is so old, really. because its close to 5 and that is really old.

 

she is only months away from kindergarten round up, her final ARD, summer vacation... and then going to elementary school. i always had this picture in my head of reese heading off with her sisters to school. all 3 so close in grades - k, 2, 3. all reese wants to do is ride the bus home. yeah, we'll see if i unclench that much. ha. she's too tiny. but i guess thats what big sisters are for - to protect.

sawyer lost her first tooth. which really needed to happen because the other tooth was coming in behind it 0_o she was so excited. she wiggled it for weeks before finally coming home with that tooth in an envelope.

 
she got $5. it was that or a twenty and i dont think the tooth fairy is that rich lol

since the bigs go to school every day (and reese doesn't miss like she did so much last year), its been really nice to just hang out with miller. she's so funny. and sweet. and cuddly. and rude. and bossy. but still funny. she spends most of her days at home in PJs. and the other days at school in her bear slippers. because miller doesn't care. she's so cool.

 
 we had reese in the ER for a constant fever (rhinovirus, luckily). miller got pneumonia. sawyer had strep. this was of course after the pukes for everyone at the beginning of the month. sigh.



we had a big fun project to do with aidan for her "living museum" at school (about ohio! yay! lol). we've had a ton of dance practice for the downtown christmas holiday show that aidan, sawyer, and reese are dancing in this wkend.



things are as they are supposed to be, i guess. it is funny - i emailed about the ccbd (center for cancer and blood disorders)'s big xmas party. we didnt go last year because reese had meningitis and so this year i wanted to plan ahead. but she doesn't qualify. which is totally fine, but it was so strange. she is not on treatment and its for kids on treatment. ok. i sat there reading it feeling both totally blessed and scared to be in that position again. i am not removed from "them". i am not removed from children who are in treatment - honestly, on certain oncology pages, i have to remind myself that we aren't on treatment.

i watch reese's hair grow. she got a new AFO boot and i watch her walk so well with that. reese is getting such a funny personality and watching her be who she was always supposed to be is amazing. corbin is growing up and becoming a part of the party. she is funny and naughty. and giggling. and fat and happy. miller wanting to be a big girl and the big girls being too old. sawyer is growing out of that little girl and into 6. it suits her, but its strange. aidan is turning 8 in a few weeks and i see the preteen coming. its horrible and awesome at the same time.


i am thankful for so many people. people who take time of their day to remind me that they are still praying. it brings me to tears. i am thankful that i meet people who have no idea why reese has a mohawk - not because i dont want to talk about it, because i do. and i always will - having a brain tumor usually comes up within a few mins of chatting, but just that they think she's totally okay. i am thankful for my family, for my friends. i am thankful that i am not angry. that i understand that no matter what her brain tumor took away, every day is a day we take back. she takes it back so fiercely. and for that, i am eternally thankful.

have an amazing thanksgiving. spend it hugging those who you love.

reese's teeth.

wahhhhhh.

i was nervous today going to see her after surgery. partly bc i thought she'd look so different.

a few weeks ago, reese's cheek was puffy. there was a spot on her cheek and we all came to the conclusion that it was a bug bite. it only bothered her every once in a while - and only for a few seconds - and so that was that.

only it wasn't.

long story short, it was an abscessed tooth. her top right 1 year molar. we figured it out bc i looked in and it had [pardon the ew] kinda pus'd out the side.

anyway, we headed to the dentist. first EJ took her to the children's ER bc her counts were low that week. they assessed, but there was nothing we could do with counts that were as low as hers then - so we put her on amox and waited. last wednesday, i went to the dentist downtown and we got x-rays. bottom line, a lot was wrong.

first of all, she needed that molar out. secondly, sigh, ok - so basically a lot of things were against her. we noticed when we got home, officially, in january that her teeth really looked dirty. we brushed at minimum of 2x a day, sometimes 3, on the regular - so morn, after nap, before bed, usually. but the damage had already started.

being in the hospital so much of nov/dec and being given pediasure to get cals is just sugar... drinking out of a bottle is no good (except having a stand off with a kid with DI only does one thing - raise sodiums. so while i tried to swap to severallllllll types of cups, letting her pick out a dozen of them. nothing worked). and then - the worst - chemo.

people who do chemo have little saliva. so while you and i (and your kids) can eat and drink certain things, your mouth rinses itself out. reese's does not, really. so it just compounded.

as for good things we did - she doesnt get sugar like she did before. when her tumor grew, that was that. dozens of people mentioned to us bad cells + sugar = more bad cells so we figured "no time is better than now to quit that crap!!" since december, she doesnt get gross cereal, her drinks are 99% water and only milk to barely change the color so she'll drink it, etc. no donuts, no sugary things really at all. she'll very randomly have a lick of someone's ice cream or a bite of a cupcake for a birthday, but in all honesty, she doesnt even WANT it anymore. people laughed at one of the girl's end of year parties - reese held a cupcake for an hour. i knew she wouldnt even try it. then we threw it away.

all that aside - the damage was done. and we tried to fix it by brushing the heck out of her teeth, but her enamel was already gone.

we had good numbers last week, but when we were getting ready to go to chemo this week, the onc called and said "oh wait. they are TOO high." meaning - the jump between 2 weeks was so high that it meant the white cells were in overdrive trying to kill an infection. so our original date of aug 5th for teeth fixing was moved. and chemo got bumped.

so. today. surgery at 8am. she got that molar removed, her 4 front top teeth removed, 4 crowns on molars, and 2 k9 natural crowns, and sealant on the rest of her teeth. we wanted anything out that could possibly have potential to abscess (infection is a no-go for a chemo kid) or hurt her permanent teeth.

she has to smile REALLY BIG for you to see it and she kinda looks like a vampire LOL she'll get pedi partials (fake teeth/perm retainer) in a bit. maybe the next time her counts go up if we can get a move on it that fast.

maybe its vain as hell, but i dont particularly want her to not have front teeth for several years.

this whole entire thing just killed me. my kids have good teeth - aidan and sawyer = perfect. EJ and i have 1 cavity in our lives between us (p.s. its not me. zero on this girl). so for this to happen to reese makes me feel like such a failure. i know its not totally my fault. i know "hey, she needed pediasure. hey, you had bigger fish to fry [aka a tumor]. hey, chemo also sucks!" but still...

i will try to get good pics when i can of her cute grandpa face ;) but for now, we'll just keep feeding her soft things and getting her used to it all. she actually ate a good amount today, so im happy about that.

thank you for your prayers. after my last post, i really have felt so much more at ease. God has given me several "I got this. Relax." signs. and i just have to trust them. i called the onc last week bc reese had said "ow" and touched her head. then, it was over. i freaked. for no reason of course bc her hair was falling out and reese says "ow" when she itches. but at that moment, i couldnt not call.

i was in tears with her. she understood. but she also said something that lifted my very heavy heart. she said its very rare that they are surprised by an MRI. that after watching kids progress so much (or regress), rarely are they like "oh holy cow, what?!?!" so i am going to take faith in reese's amazing progression. that when i stare at her eyes - its okay. that when i see a bruise on her head - i remember that she's 3 and has a toddler sister who wrestles with her. that i can REALLY CELEBRATE when i see her *run* in her walker at PT.  i just overall need to have faith.

next week is chemo and MRI. i just want next week to be over. i want to celebrate. with everyone. i want to squeeze reese's "there's barely any tumor here!!" face. i am in this limbo. i wanted her MRI to be here *right now* for so long. and now that it's almost here... i dont want it at all. so specifically, thats my prayer request for the week... awesome news at the MRI.

i have a 4th of july (happy things!!!) blog coming soon once i finish uploading those pics. thank you again, sweet friends. for everything.

and as always - punkfictionv4 is my IG and i update like crazy. so don't be surprised.

reese's toothbrush.

she seems to think that the perfect opportunity to do anything is when im feeding miller.

she is right ;)

so today she grabbed a chair, pushed it to the sink, and wanted to brush her teeth.

so i obliged.

more sisters and wake up trouble.

i went and woke aidan up from nap today.


she had lined up some of her books.


and put clippies in her hair.


bed head. yo.


we all played in my bed.


kissy face.


sawyer was excited!


reese was not.


love.




my dad came over yesterday :) they love papa.