Monday, September 15, 2014

high priority.

one day i want to ask the doctors what they thought about reese when she first came to the hospital in 2012.

brain tumor friends of mine have stories of dizzy spells. of headaches. stories that are terrible, but then they went home after that, until a plan was made.

but not reese. her heart rate was in the 40s... 30's... 40's... back and forth. the pressure in her head so high. the vomiting. we knew, but we didn't know. how many days we spent back and forth to ERs wanting answers.

i wonder what they said when they saw her. or after the first MRI. we were high priority. rushed downtown from baylor frisco in the ambulance. then whisked to the ICU, where we'd live for a month. she was delicate. her case was delicate. everyone we ran into knew. she impressed us all over months of healing. more brain surgeries. the DI. so much chemo. maybe it was all old hat for them. maybe everyone had the same hope for the future that we did - but sometimes i wonder if they thought the worst and they surprised them.

today reese had an MRI - her second MRI after chemo. she had one right before finishing protocol in april, one in june, and now september.

we got there this morning and reese started to meow at the MRI nurses. who meow'd back at her. then she ran around trying to scare them. she laughed so hard. and someone remind me to get her "shhhh tiptoe" walking on video. its awesome.

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ej and i went to go eat lunch. i was not as nervous as normal, at this point. i watch her every day - her walk, her bad arm, her eyes. and i felt okay. but as we later waited in the clinic room, i could hear my heartbeat in my ears. i thought i was going to pass out. the height of the possible fall sat on my chest like a weight.

everything is stable.

the oncologist mentioned how there are still things that light up on the MRI, as we all know, she still has tumor in there. but its not doing anything - so stable is the best word we can hear.

but then things went a different direction. a direction that i knew would come eventually.

do you want to have her port taken out?

2 MRIs is the "rule". and by "rule" i mean what they tend to do. but whatever we were comfortable with. i just put my face in my hands and told him to decide. not EJ (lol), but the oncologist. i felt like everything i said would sway my thoughts on her tumor in general. if i said yes, its like i was taunting it. if i said no, i was just waiting for it to grow.

he said to go ahead and get it taken out.

this is huge. this meant that if she gets sick... a fever... we stay at home. or we go to a pediatrician, if we so choose. they will obviously be there for me - for questions, for things that i am concerned about MORE than the pediatrician would know or even understand. they are some of the only people who do understand - and they know that.

her next MRI will be in december. but, for this MRI, no news is good news. her MRI will be mon, tues, or wed, likely... but then a check up appointment that thursday. so if we don't hear anything in those days, then we are to believe that the thursday appointment was full of high 5's and more stable.

also, thursdays would be our new clinic days. thursdays are for the people who aren't "high priority" anymore. for those who are more... after. we aren't pushing poles down the hallway. we arent rushed to the ER. we aren't crying in the hallways.

...hopefully ever again. 

but today i cried. they are talking about these wonderful things and i cried. it was so much to take in. so much good to take in. but all of it has to be swallowed with such hope. all of the celebration is intertwined with possibility of sadness that simply has to be pushed to the side by faith.

so this is the fall we deserve. this is the fall that we had in 2011. what i thought we'd have in 2012. what we almost had in 2013. school, cool weather, pumpkins, baking, crafts, holiday events, family parties... none of this, hopefully, overshadowed by spots on an MRI.

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  1. Love. Just....... love (and lots of it!)!

  2. so happy for you! so fucking happy for you all!

  3. YAY!! So excited for you!!!!

  4. tears.........wonderful tears! amen

  5. I read this and in the last paragraph i let out a huge Sigh, and then cried. I am so excited for your now. for the moment of good news that your family has right now and hopefully for the future. :)