a friend named phoebe.

i have spent days typing and deleting. i can barely put into words the things i want to say.

when we were at children's, originally, it was hard to find people who "got it". there is a limitation that friends and family, even, can feel that is the same as a parent and child.

in november, "a God thing" happened. my uncle met a woman at a funeral (his friend, her grandfather - the amazing and inspiring, zig zigler). my uncle told my mom that she would like to talk to me if i needed anything - and i was grateful for that line of connection. yet still did not know details.

within 24 hours, while at the hospital, an oncologist was talking in our room to the nurse... "you know who they should meet? phoebe". the nurse agreed enthusiastically. the oncologist told us that while reese's tumor is completely different, they shared some of the same endocrinology problems - the DI, the ddavp shots then, the cortisone, the monitoring pee, the ins and outs... but that phoebe's parents were "masters of DI" and if they could hook us up, would that be okay?

of course.

i tell my mom about it. she tells me who my uncle was talking about. and sure enough - same family. i knew i had to connect.

amey is a source of hope. wisdom. a mom who understood. we could chat about frustrations of getting the ddavp shot at the hospital, chat about how scary it was to wait for an MRI (she taught me the word "scanxiety"). and how she balanced 4 children. i could ask my "did phoebe ever...." or "what did you do when..." questions that no one else had the answers to. no one else understood.

(video posted less than a week ago) https://vimeo.com/70128830

https://www.facebook.com/PrayForPhoebe
https://atypicalmiracle.com

in medical short, phoebe had an AT/RT tumor. after surgery and a year of very very aggressive chemo, she went home clear. her hair growing back, happy with her family, they went on trips and spent every second of that time together...

she started to have headaches. and last friday, their post was:

"It is with great sadness that I post tonight. Phoebe's cancer has come back. She has a new tumor growing in her brain at the original tumor site, and a new tumor growth on her spine. Because the tumor site in her brain is in such a sensitive/integral area, it would not be ethical to radiate. She has already had the most intense chemotherapy protocol available; more chemo will not knock out these new tumors. We can expect to have 2-8 more weeks with our precious girl, unless we witness a miracle. We are clinging to the hem of His garment...Thank you all for praying for our family. We love you."

i read that while at the splash park with my family... i had been waiting all day. praying all day - for a clear scan.

i cried there at the park and my chest panicked like i did months ago. oh phoebe...

i can't seem to put into words, exactly how i feel. heartbroken. just... broken, completely, for them. i pray with every breath for their needs to be heard. every minute i hope for a miracle. phoebe is a miracle.

if you read the updates of late, phoebe has had a terribly high fever and they had to run to dallas for some morphine before hospice was set up. so quickly things turned.

phoebe has taught thousands of people how to live. how to smile. she's an inspiration that will live in the hearts of those thousands of pray warriors - many of the same warriors that pray for reese - forever.

amey and nathan, phoebe, and your boys, thank you for showing me how to be real, how to step up when needed, and how to cherish every single day of our lives. every minute.

and how to laugh and live through the tears... and how to live by faith.



anyone interested in purchasing a phoebe shirt, her church family has set it up HERE. put size in special instructions. all donations to the fair family, of course.

there's so much more my heart could say. fear, sadness, hope...

praying for you, phoebe. sweet baby. :(

girl. girl. girl. girl.....

girl. of course :)

i have more to blog soon, but i figured i'll get this up!



(i stole this pic off facebook - so hopefully it doesnt look like shiz haha)

we have a few name choices flowing around... so hopefully we'll settle that soon. awesome week.

more #skeltebaby5 on IG - punkfictionv4

eta: i got a couple messages asking what the girls said.

aidan was over the moon. she told each nurse and dr at chemo clinic today "another sister!!!!"
sawyer really didnt care. she's so "ok. cool. whatever"
reese still says boy ;) i'll have to convince her otherwise.
miller... well... she probably cackled. like she does.

EJ was hilarious. "seriously!!!?"  it really is sort of shocking as far as odds go. we both thought boy - mainly bc of cravings and the fact that i dont really know how many people get the same gender 5x in a row. but when she said girl, i straight up squeeeee'd with excitement. let the "so will you have another?" (no.) jokes roll in. i got what i wanted hahaha 5 girls. perfection.

another MRI.

another good night's sleep.

i have been worried, for months, about this MRI.

i called last week, after her teeth surgery, to ask if the bruises on her head could possibly be the tumor growing and busting out.

they said no. and slightly giggled at my having to stifle my OWN laugh while asking. i knew the answer, sort of. but i had to ask for peace of mind.

i didnt sleep that well. i prayed a lot. i asked others to pray. i worked to relax and to trust God.

today EJ brought reese in early so clinic could access her and get blood drawn, i dropped ASM off at my parents and headed down - got here about 9:30ish. she left for the MRI at about 10:20a or so.

we went and ate breakfast, came back up and sat... at about 12:30 i was like "uhhhh... its been a long time", but she was done soon after :)

when we got into her sedation recovery room, she was already sitting up, and not really in that bad of a mood. we packed her up, went down and got her lunch, and headed back up to chemo clinic to get ready to start that and then get a room.

thats when i started to get nervous. bc that is when the oncologist comes in and goes over the MRI.


long story short - tumor smaller. noticeably smaller. :))))))

the *reason* the MRI took so long today was because one of the oncs accidentally marked "brain and spine" and not just brain. so then, of course, the *other* oncologist (who we really have met maybe, oh, once) mentioned how on the spine, all looked good, minus a small spot, but they really dont think its anything and arent worried at all - and they'll "recheck it some time in the future". eta: she doesn't know me bc, um, she could have left this whole thing out. lol please see first few sentences for how ::twitch:: i get about little things ;)

i trust their... rush or not rush, honestly. when she had fluid/blood on her MRI a few months ago, they were like "ok MRI in a month!!!" there was no real waiting, ya know?

anyway, i googled, like a good neurotic mother and it *seems* that there are dozens of reasons that could happen and none of them make me want to vomit. and since no one is worried, im not either. and ALSO, itd be kind of weird for chemo to be knocking this tumor our of the park and then something else pop up. i'll make them accidentally mark that same box in 3 months ;) don't you worry.

so here we sit. she's had her chemo - now mesna and fluids. we'll leave tomorrow.

thank you God for shrinking my baby's tumor. thank heavens we have figured out her "cocktail" to where they see a noticeable shrinkage each time.

this leaves a bit of ::exhale:: for her to be evaluated for PPCD this year --- its a few hours a day, OT and PT would be combined, she'd be with other kids, its with the school district, and she'd get used to going to "school" a bit while getting therapy. i, of course, would go nuts without her here all day, but it really is only like 2 hours? :)

also, the MRI results confirm why she's been doing so damn awesome. and everyone around us has noticed. i love when people tell me that they notice awesome changes in R.

thank you for praying for and with us today. i am beyond grateful to have an army of #gingerfight warriors behind us - praying, sharing her story, and loving us like family. 

the meaning of summer.

sun. fireworks. bathing suits. and being lazy. that pretty much = summer, in my opinion.

splash park fun.

the 4th of july was so fun - first we went to the parade in downtown mckinney. the girls had a blast! that night we met up with family and friends and let the kids run around while we waited for the fireworks show. 

today we had a lazy day in the gameroom. too hot for anything else. and reese's teeth are healing. (p.s. she feels really good. kinda whiny, but good overall. thank God.) those red marks you see on her chest are just tape marks or scars, fyi.



see! happy post!!!

video on IG of miller (the laziest baby in town...) walking! haha as well as a reesey vampire pic!

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.

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