Wednesday, October 16, 2013

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.

#reesey #spongebobpjs #pleasegetbettersoon

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...

Oh #reesey dear God protect this sweet baby tomorrow. #powerofprayer

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.

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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.

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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.

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...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.
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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.

13 comments:

  1. <3 <3 <3 Good news will keep coming. I believe that with all of my heart. Trick-or-treat will be good from here on out, full of fun memories of hauntings, hayrides, pumpkins and candy.

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  2. Crying over here....but so so happy for your family! Wishing you all the best as it is more than deserved!

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  3. God bless you and your beautiful family. Praying for you all.

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  4. i'm so happy for you all. i was actually thinking about reese earlier today and was going to ask around to see how she was. i'm so happy to read this news. you all will be in my continued prayers.

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  5. Oh Amanda. Although we're dealing with a totally different illness I relate to your post on so many levels. The first days, weeks are so gut wrenching. Now almost a year later they are vivid yet, distant. Enjoy Halloween, Thanksgiving, Christmas and the birth of your new daughter. You all deserve nothing but happiness from here on! Much love to you all from CA!

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  6. This was a beautiful post, and you are a beautiful woman, and a beautiful mother, with very beautiful children.

    I've been reading and following for several years now, since about June or July 2009, and I've been crying every step of the way. Sad tears, happy tears, scared tears...I just wanted to say that from an outsider's perspective, the progression Reesey has made in a year is TRULY *nothing* short of a complete and utter miracle. She just looks. so. good! And every time she makes another huge leap forward I'm simultaneously blown away and yet, not so surprised as the time before. That's just Reese - amazing, brilliant, funny, sweet sweet Reese.

    Thank you for allowing us all to experience this journey with your family. :) Please know that no matter how dark the road gets, we'll *all* be there to light lanterns and candles along the way. But now is the time for JOY! Crazy amounts of huge, insane JOY!! Bye bye tumor, can't wait for you to be gone for good, you will *not* be missed!!

    All my love and joy to your perfect family, Amanda. OH, btw, did they give a new update on how long they think she'll have chemo for? End date still this spring? Also, how is her walking come along??

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  7. It has been nearly a year since someone referred me to your blog. I'm so glad they did. I have enjoyed crying and rejoicing with your family throughout your journey. I cried through this post because I am just so happy that you all are where you are now. You deserve it. Enjoy your holidays throughout the next few months. God love you all!

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  8. I should not have read this at work. I don't know you in real life but have followed your blog for years and I remember last year so well constantly thinking and praying for Reese and reading your updates wondering how something like that could really be happening for you. I'm so happy to hear this news and to see your beautiful, happy pictures of Reese and your whole family. God bless you! Enjoy the holidays!

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  9. Wonderful news! Enjoy the seasons all under one roof!

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  10. I held my breath reading the beginning of your post and when I got to the part Tumor shrinking I started crying...God is so GOOD!!! I do not know you personally but have been following your blog so so so happy for your little girl!!!! Enjoy the next few months and we will all rejoice with you again in January!

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  11. Amen! Thank you God for this! I have been following you on and off for 3 years. When I read about what you were going through I cried for you, your family and your sweet Reese. I pray for you all the time and will continue to do so.

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  12. Someone referred me too about your blog. I am crying and praying along with everyone else. Amen for life, all life and any way we can have it!

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  13. Ahhh and I'm sobbing!! I can find myself in so many of your words, but also find so much encouragement to push on. One of the best quotes I heard during the roller coaster of childhood cancer is “You never know how strong you are until being strong is the only choice you have”
    Wishing you an awesome Halloween, happy holidays and I can’t wait to keep hearing all the good news on Reese. She is so much stronger then the tumor and tumor will keep shrinking!!!
    Love,
    Jelena

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