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.

new memories.

the last 2 weeks or so have been so busy. right after the MRI, reese had an ear infection.

its funny bc i was just talking, on MRI night, to another brain tumor mom - and we had said we deserve "just an ear infection" lol since everything is so much bigger for us. its never "just" anything. but that wkend it was. and let me say - if i hadnt had an MRI on wednesday, i would have been absolutely (more) insane for the way she was acting.

even so, she slept the day away on friday and i called the onc nurses asking "is this normal?!?!" as if i am a first time mom. but her counts had already dropped and we expected fever. which she got friday night. EJ took her in, they did a chest x-ray to count out pneumonia (she had a cough, too), and then started up meds. when i got there saturday evening, she only felt a bit better. we swapped for the night and BOOM - sunday morning was a happy girl :D

we spent last week running around to different appointments, liken normal. PT, OT, labs... we got her sized for a new AFO boot and also got her... walker!! :))))


it'll be easier when she has her boot to brace her foot, but she really does think its nifty. for those looking, this is a rifton pacer. in hot pink. ;)

the rest of the week was pretty "normal". it was spirit week at school for A and S, dance classes, running errands, and then on friday aidan got "mav of the month" for her class - so we went up and cheered for her. :)

THEN yesterday, we went to the pumpkin patch. last year, we had a sick baby. it was so weird bc i remember wanting so badly to DO those halloween things bc i had this weird feeling that i'd regret it. i can't explain it. this year, i just couldnt wait for her to have the fun that i knew she'd have. and she did. as you can see, still a daddy's girl. but this year they actually picked out pumpkins (that she has been carrying around and even sleeping with lol).  all the kids had a blast. until i tried to get them to take a pic together. snort. maybe next year.

next up: costumes, praying for NO RAIN on halloween for scare on the square and ToTing, and gearing up for in-patient chemo again the first week of november.

almost a year later.

i almost changed my clothes today.

i had on a gray VS thin hoodie that my friend left at my house a year ago. the same person i was talking to on the phone when EJ beeped in to tell me about reese's CT scan at baylor frisco. he had, only a few hours before, taken her in bc of a floating eye. she had been sick. "oh its a UTI!" they said -- "she's dehydrated!" they said.

nope.

she had hit her head a month before, falling out of the tub, but they didnt do a CT scan that day. i don't know why. i do know that things happen in God's time, and not ours. surgeons rotate at children's. doctors rotate. nurses rotate. we were meant for the ones we had.

she left in her green and tan dress. a dress that sawyer found a few months ago in a spot where i had tucked it away. she put it on a stuffed puppy. i couldnt hurry fast enough to tear it off and put it back in its hidden spot. her "memory" box. a huge rubbermaid filled with bags of hair, hospital gowns, cards and letters of love...


EJ called that night to tell me that my parents were coming over. my mom would stay. my dad would drive me to children's medical center in downtown dallas. i was not to drive since i would be too emotional. as it was, i wouldnt remember most of the drive, either way.

i put the gray hoodie that i had on today, after i called another friend to tell them what was happening. she sent me around the house with a list of things to do. things to pack. one of them was hoodies - hospitals are always cold. i packed one for EJ, too. i walked around from room to room trying to prepare for something that i didnt even realize i couldnt prepare for.


6 weeks. we'd spend 6 weeks living at children's. i didnt pack that in my bag that night.

i was actually numb. like physically tingly all over on the drive. thinking in my head that they obviously read the CT scan incorrectly.  how wrong i was.

one of our (later) favorite neuro fellows would be the one to tell us how large her tumor was. "i got it." i think to myself. as if i needed any more details besides "brain tumor." i didnt understand anything anyway. not the way i do now. i never wished for this knowledge.

she had a heart rate in the 40's. head filled with fluids. i dont even know how many days she probably was like that. it makes sick, honestly, to think about. earlier that evening we had gone to "scare on the square" and she just... laid there. slept. i thought i already had a diagnosis. now we were waiting for her to feel like herself... again, so wrong.

i lost myself in tears in the early morning hours of november 1st. lost myself in EJ's tears as we sat on the horribly uncomfortable couch of the ICU. i couldnt breathe. it would be a days before i could. before i could keep food down without immediately puking it back up.


there are some moments those first that you don't forget. it was like a movie... EJ and i walking away from carrying her down to her pre-op MRI, cuddling her laylee around her before we left, explaining to the nurse how she liked that.... then collapsing. physically collapsing in the hallway, heaving into each other's chest.

i won't forget laying in the ICU waiting room for phone calls during surgery. or EJ needing to walk around and finding our amazing neuro-surgeon on the way.

reese saying "daddy..." as her first post-op words.

the other kids, my parents, friends... coming up to pray with us. to see reese. aidan and sawyer didnt understand.

but mostly i forget a lot of other things. i barely even remember the entire time of us being there, in patient. i dont remember details of EJ telling me about what pathology said - as i sheepishly ran home, knowing the onco would be there that afternoon. i didnt want to hear it, except from EJ. i don't remember smaller surgery details - like port or shunt. i remember them happening, sort of. but i was a recovering brain surgery mom - a port seemed like a walk in the park and the shunt was the end to horrible fluid collection. we spent days with a bag of brain fluid next to her bed. having to tie her arms down, a bit, so she didnt touch the drains on her own head. that awesome chevron scar, impressing people daily. i barely remember her having the DI so bad, where we had to give her DDAVP shots 2x a day. the doctors honestly have never seen someone "fix" DI the way reese has. its just... gone? at least thats how we are acting now...

i dont remember how it all worked, really. but it did. dozens of friends helping and bringing food, cards, and love. my family watching the other girls - making them completely at home, wherever they were.  the candles burned. the bracelets and t-shirts worn.

i remember finally coming home and thinking how good i thought she looked. nothing like now...

...and today. almost a year later. i received their 2013 halloween costumes in the mail, ready for the date that have dreaded for so long. i put my sleepy 3 year old to bed, cuddled around some new comfy blankets. she had an MRI today.


...a year later. 2 brain tumor debulk surgeries, 2 port surgeries, 2 shunt surgeries, several MRIs, an "old" chemo protocol that wasn't working, a new protocol that is "impressively" shrinking her tumor, several inpatient stays for chemo or fever...

i visually saw the shrinking on the computer screen - even from just july's. then EJ asked to see the first MRIs again (before the first surgery). i had never seen them. what i saw there was.... unreal. bright, white -- and huge. weaving from the center spot to the side. like an upside-down U. and, as our oncologist reminded us, it got bigger at one point. to put it in numbers (ish - it was a quick dot to dot, not official markings) - when looking at just the side of her head, july was like 20mm across. today was 16mm. i'd say at one point, it was triple that size (or more). that is inches. INCHES of tumor one way - not to mention depth, height...

but today, we have a bright, giggly, and amazing little girl. one that talks more. one that now uses her "bad arm" for things that she didnt before. one that booty scoots so fast, its like she's on fire, but she can also crawl, knee walk, cruise around on furniture. she is smart. she feels good.

next MRI will be in january.  but now we have trick or treating to do. we have thanksgiving to eat at home - and not at the hospital. we have another baby coming. reese asks daily "she coming out?" when i ask where corbin will sleep, reese responds with "on my heart..."- meaning in her chubby pen marked hand. we have christmas coming, where she wont have just left another brain surgery - she'll be opening her own presents and squealing with glee over tiny things throughout the day.

i will have a lot of flashbacks to last year, this fall. but only to remind myself how far we've come. to remind people that miracles happen. the tumor is not 100% gone, but neither is my baby. that is a miracle. the power of prayer, the genius of doctors, the poisonous medicine that heals...

a year ago, when i read blogs with stories similar to my story now, i thought to myself that i would actually die. that there would be no way my body or mind could keep up. but thats not true, at all. our new normal is full of light and love. full of strong family. good, honest friendships. doing certain things, daily, because it makes my children happy, even when they make me crazy.

not living week to week, but living minute by minute. even if some of those minutes take my breath away with fear, make my heart stop out of anxiety, or have me crying in the car because of hypotheticals.

i don't wish those feelings on anyone, but its our life. and its a damn good one.

another 3 months.

we're almost at another 3 months. another MRI. more sleepless nights worrying about "what if" scenarios. bad dreams. so that is coming on wednesday morning.

we don't have an appt after so i guess we just... go home. which blows. in my head i have 4 scenarios.

1. call quick bc its an easy call of "looks good!!"
2. call quick bc its something horrible.
3. call late bc its an easy call to do at end of day.
4. call late bc they had to talk to 3 other drs about something horrible.

so. i cant even guess. lol

in any event, reese feels good. ornery as ever. funnier by the day. choosing to use her bad hand, regularly.

i need this MRI to be awesome. obviously bc i want reese to not have a tumor in her head. that goes without saying. but now its been a year (almost) since diagnosis. 1 year. we won't have another MRI til january so this scan takes us through the holidays.... through halloween costumes and events, through thanksgiving NOT at the hospital, through having our 5th baby, through xmas and the new year...

and every scan is just one step closer to being done, eventually. and i want to be able to cheer when chemo is coming to an end. not dread it.

so i guess all of this is to say - prayers please :) i know we have some amazing warriors out there. and i appreciate every single person.

on some high notes - this past wkend, we had the privilege of going to great wolf lodge with Carson's Crusaders. aidan, sawyer, and reese went and whoa, did they have fun!! it was such a blessing and a treat to hang out with other parents/siblings of patients and see them all have a good time.

it was so well done and fun and... i am glad we had the opportunity to share this wkend with such amazing people. thank you CCF for such a wonderful time.

this past week, we also had chemo - although things went a bit, erm, differently. as i was packing the kids up for where they'd be sleeping on tuesday night, for extra currics, etc... i got a call. when i see 214-456-xxxx that means hospital and i KNEW that meant there wouldnt be a bed for us to stay overnight like we normally would. but it was worse than that - they didnt know WHEN we'd get a bed. ugh. its incredibly sad and overwhelming to think that so many children needed to be in the hospital for chemo last week that some kids couldnt stay like normal. but lucky for us, they had a plan.

they told us to come in tues for labs/dr appt (we see the onc to chat, etc "officially" once a month. we see him more than that, but thats our official time). then wednesday, i took reese in early and we went to the day hospital/infusion area. we did her chemo and THEN they sent us *home*... where we finished fluids. she has a fluids/mesna mix that she has for 12 hours after chemo (mesna clears out the bladder so chemo doesnt ruin it) - and we were able to stay accessed, have home health get us a pump/meds, and we were on our way!

part of it was nice... being at home and not at the hospital is, overall, glorious. doing laundry all night bc chemo makes for a pukey time is not ;)

i had a bit of ::twitch:: when leaving bc they mixed her mesna in .45 saline and not .675 saline (i wanted more sodium in it), but after the onc calling me and talking me down (lol), he was right, it all went fine. we are, basically, treating her as if DI is a thing of the past - which it has been. we havent done DDAVP since march? and really havent had problems. i dont know what that means besides "what a miracle", but ill take it.


i have wanted to write a blog all week, but kept putting it off bc i didnt know how to talk about one thing.... phoebe. that sweet girl became an angel on oct 5th at 10:30pm. i woke up on the 6th, looked on facebook and burst into tears, sitting in my bed... how unfair.  but phoebe changed tens of thousands of lives. she taught people how to smile in the darkest of days. amey and nathan taught everyone around them about what true faith is. none of what im saying takes the pain away. none of that brings a baby back to her family. :( but i am asking you all to remember the Fair family in your prayers from now on. they have 3 other children that miss their sister.  so with that, you have a few prayers to say ;) and i just want to say that after a year... i still appreciate and love every single letter, postcard (omg wait til you see the book when i am done), treat, and prayer. there is not a day that goes by that i don't realize how blessed i am.