merry christmas 2014.

there's a cloud. 

it's not a dark cloud really, but it is there. lurking around the corner. i know that the next few weeks wade between "nothing to do" and "things that are really important" and so worry flows through my veins and thoughts ever so often. i think about her chest MRI for port placement, getting her port, but mainly, just praying that the tumor hasn't grown more and that vinblastine is going to kick it to the curb.




yet, none of that matters today. because it is christmas. truth be told, it doesn't matter any days because knowing there's a cloud doesn't heal brain tumors. but some days, i am more aware - and some days i forget its even around.

EJ is upper respiratory sick - to where his chest hurts at almost every movement. miller has the flu and an ear infection. corbin has the flu. reese is on tamiflu as preventative. no one needs to be at our house to catch this - so it was the skelte-seven today, celebrating alone.

...which is funny that i even typed that; with 7 people in a family, no one is ever alone.

last night we went searching for pizza. we ended up at mexican. a win either way. i drank some wine and brought everything out to finally wrap presents. i love doing things at the last minute - and that is not sarcasm. i shop late, plan late, wrap late, but it makes me so excited.

reese was up early, as always. aidan and sawyer were the next to come down - already begging to wake corbin and miller up.

i took a shower. mainly because i remember how awful that was when my parents did that to me (lol). it made me giggle. but they were up cleaning their rooms making space for what santa had given them.

we really had no misses. my parents brought their stuff by yesterday, careful not to catch any germs. and between all of us, the kids loved, literally, everything.

2014 asrmc xmas from amanda skelte on Vimeo.
^ if you want to watch that, i made that for my parents so they could see some present reactions :) otherwise, pics will be below. my camera died by the time we got the trampoline out and such (omg they are so excited!) - but EJ started building that, until he just was in too much pain. poor guy. AMC wore their PJs most of the day, but reese said she needed "daytime clothes!!" on. and sawyer had to change into her tinkerbell dress the second her new heels came ;)

tomorrow is corbin's birthday - and i'll blog a separate one for she and aidan's big days. but it's amazing to me that my kids are now 8yo-1yo. no "____ months old!" just.... a year. no babies. no babies on the way. and then an EIGHT year old makes me feel so old haha

jan 2nd is reese's chest MRI. i'll have to somehow harass surgery scheduling on monday at the latest to get a port date on the books, so we arent pushed out for starting chemo any further.

so, merry christmas. christmas number 3 with this brain tumor, with the new found friends and prayers. christmas number, oh, 7? since i started this blog. seems so surreal to me to have so many years captured in the same place, but each one so incredibly different. they will continue to be so, since our new end date, for chemo, is now going to be in 2016.

this christmas, my kids took reese's new medical kit, that she got from santa, and had port surgery. reese laid on the floor and "got a new port" willingly from surgeon, aidan, and assistant, sawyer. she got up and said she was "all done!"

next christmas, i hope that she almost is... all done. for good.

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.

a thank you.

a year ago tonight, EJ called and told me that they "found something".

within minutes of telling my friends, there was a group on facebook for updates, a donation link, people from around the world praying…

i was, and am STILL, amazed by the support and prayers for reese, every day.

the letters, the postcards, the photos, stuffed animals, toys. the gift cards, fb messages, blog comments. the dinners… OMG the dinners… we are blessed beyond comprehension.

so this morning, i want to say thank you. i dont even know HOW to say thank you in an appropriate manner - that gets my point across.

God listens to each of our prayers.

now, a year later, reese's tumor is shrinking, she feels good, she talks a ton, she is learning to walk, she uses her "bad arm" better…

and tonight we rule the trick or treating world in our mickey mouse club house costumes.

and a video. :) traveling through a year… we have a long road ahead, but its amazing to see how far reese has come since last year… #gingerfight

Reese One Year Later from amanda skelte on Vimeo.

table for 7.

watch this vid.  real fast.

New Project 1 from ashley Bass on Vimeo.
surprised?

i was. lol i think we're all still kind of in shock.

when i gave birth to miller, a post-partum nurse in the hospital asked "so you think you'll be done? or go for 5?" and i laughed and said "oh who knows!!" and she retorted with "if you don't say no now, i bet you'll have more..."

for a long time i thought "oh cmon... we could do 5. right? wouldn't that be fun!" but a whole other part of me was okay with moving on to the next, non-newborn, part of our lives.

when reese was diagnosed, i thought for sure we were done. and i told almost everyone that when they asked. a lot of our nurses at reese's hospital would ask me if we were having any more children and i thought "how interesting that they'd ask me that -- wouldn't they THINK we were done?!"

then time passed.

i think a lot of people have a perception about my day to day that isn't exactly on par with the truth. my days are often full of things that we do, but not all of it pertains to reese. she has PT/OT on mon and wednesdays and labs on tues. thats it. then chemo is once a month for overnight - about 36 hrs total. is there potential for longer? oh yes. are there other potential stays? of course. like this month we went in bc she had a low grade fever. that resulted in us going home then coming back bc they thought there was bacteria. buuuuut there wasn't. so did we have to stay overnight in the hospital? yes.

does it seem easier, sometimes, because we have amazing support? oh sure. knowing that i have a place for my kids to stay for the night while we are at chemo keeps me calm. knowing that if an emergency happened, we have family and friends to help keeps me sane.

but day to day, things are as if i had non-walking twins, almost. the "hard" (and i realize they arent actually hard) parts of my day with reese/miller are getting them into a store if there are no carts outside, taking one in the house then the other, getting strollers set up to go into places, etc. day to day, i have a normal 2-3 year old who just can't walk and needs oral meds a few times a day. during this past school year, we were barely at home running to extra currics and events and games and things... but it wasn't reese that made it harder. reese makes it better :)

we can go out and do things - splash pad, park, store, etc. most of the time bc i know her ANC counts weekly. kids on chemo, remember, aren't neutropenic 100% of the time. most of the month, her counts are the same as my other children would be (and they can tell if they are trending upwards after a low draw based on levels of other things...)

all this to say that we are excited about #5.

now, do i worry all the time that life may flip on me? most certainly. i worry that when reese has her next MRI (july 17) that somehow my world will come crashing down. i pray it doesn't. i pray that the meds are doing their job, as they have been, and that the doctors are even more amazed with reese ;) but i can't be certain about that.

no one can be certain for what the future holds. so, our job is to be as happy as we can. love each other as fiercely as we can. and thats what we do - whether our day is frustrating and exhausting or filled with mundane errands. and we'll do that with 7 of us.

now to the reactions of the girls -- aidan came with my to my very first appt and then she immediately went to school, told her teachers within 5 mins, and THEN wrote her journal entry for the day about it :) then she went to dance and told the whole studio. she's excited, obviously. she wants another sister.

sawyer gets it, but she is totally ambivalent. except that for a few weeks she only wanted a "brover", but now she doesn't care. i think aidan is getting to her ;)

reese and miller obvs don't know what's going on. all i know is that reese is going to just freak out in love when the new baby comes. she loves babies. miller is her bestest friend in the world. except miller is getting a bit... erm, toddler, for reese. ;) now they fight and are funny to each other.

so nothing really changes for a while - i still go to chemo with reese on those tues, EJ works. there are surprisingly a few "regular" moms of chemo patients who are pregnant and i already asked if there's anything i should not be around, but all is cool. the rest we'll deal with when we have to cross those bridges. i breastfed miller throughout the worst months of my life so i see no reason why i wont be about to BF this baby during more "normal" times. we already have a list of things we can and cannot vax for while reese is doing chemo - so thats easy. and im pretty sure a pack and play will fit cozily in our bedroom with our bed as well as reese's bed ;) then we'll just re-org or something upstairs.

boy or girl, its a win/win, really. id LOVE 5 girls. i can't even explain... on the other hand, a boy would be so fun (i mean, i assume ;)) and something totally different. each has its perks - and as i wrote about, after we found out miller was a girl, we're given what we're supposed to have. every family is how they are supposed to be. 5 girls, 3 boys, one of each.... all different. and all perfect.

so that's that i guess. thanks to Lily Toes Photography for spending a napless late afternoon with me and my kids to get the video done.

i have last day of school (aidan) pics coming soon. summer has officially begun, folks!! dance starts up again next week, maybe some camps, add in some VBS, chemo, therapy, and a walker for reese soon - and we're SET!!

::waves::

as a whole.

as a whole, life seems to feel.... good.

reese feels good.

we went for chemo on tuesday. cisplatin first. then etoposide (vp-16). i got there at about 3pm. got a room about 3-4 hours later after hanging out in the infusion room. and then they started chemo at, like 9pm.



one round of etoposide the next late afternoon and we were sent home. high sodiums (about 153?), but we were comfortable handling that. the next afternoon we went back for another etoposide and now we'll just go back on tuesday for labs.



reese has puked a few times a day. we stay on top of it with zofran. one night we did alternate between that and ativan, but over all, it doesnt bother her necessarily. she just pukes and goes back to bed or back to what she's doing after we clean her off and change her clothes.

they say cisplatin's side effects of puking "peak" at day 4-5, so we still have a bit... but she feeeeels good.

she talks, she uses her right hand as an assistant and is much more aware of it, she laughs all day, is sneaky ;), and is just overall so normal.



i made the mistake of watching her "going home" video last night. she was so different. its no wonder that the oncologist is just amazed at "how good she looks!!!" - she was just so weak. didnt really hold herself up, was so... sideways (with her eye and smile) compared to now. all of it was so different.

so today i am thankful of how good she feels. and praypraypray that she only gets better with every chemo treatment.



this past week, ashley and i went around town scouting for new locations. we drove around town with kids upon kids packed into my car.

on thursday night, i let loose. i let aidan and sawyer have a time to remember.

 

today was a fun day, too. aidan had soccer this morning, then dance at 1pm. we went and ate lunch, came home for naps, then i took ASM to the park while EJ took reese to some guy store that i have no interest in ;)

they did their fave thing almost the entire time.... the swings.

 
tomorrow we have nothing, really. hopefully not a lot of laundry puke.

after my vent session a post or two back, i feel better. i feel like we are at a place where we just are getting into a rhythm and its nice.

i wanted to add this, too -- MILLER'S FIRST BIRTHDAY VIDEO!! ***click!!

also, in the IGs you'll see aidan's hair all up and cute for dance --- i don't think i posted this on my blog, but HERE is aidan and 3/4ths of her mini squad performing their dance for only the 2nd time. and may i say, i think she's awesome ;)

and to answer this question, which i get asked a lot:  when is the next MRI? this i am not 100% sure about, but i *think* it is going to be before we start the next round. that will be 2 months. i will ask on tuesday. :)

alright, on to the IGs of the past few weeks!! (punkfictionv4) -- remember the first hospital pics here are from her sedated hearing test to get a baseline (etoposide can reduce high frequency hearing....)