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.
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.