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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Monday, September 8, 2014

miller's haircut and FDOS.

we had to do it. it was time to cut miller's mullet off. school was starting and it was just... time. so macy came over to hack off the back. this is the earliest we've ever given a first haircut. unless you count reese's during brain surgery...


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then i figured everyone else should get a trim :)


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last week, wednesday, miller started school. she wasn't nervous, she didn't cry. we met up w our friends for before school pics. miller and her friend millie :) in the same class. then she said goodbye to me and la dee da. that was it.

she's so independent and awesome and really you have to meet miller to grasp the coolness that she brings. but for 2 days a week, i let her spread that coolness around ;)

she's been about 80% potty trained for months 0_o but that last 20% is the "meh, i dont feel like it..." percentage. lol so she went to school in a diaper. in about 2-3 weeks, im sending her in panties only and i am sure she'll be fine. i just need the "OMG NO TIME TO PEE ON THE POTTY!!" to wear off from school.

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she doesn't sleep there, but i pick her up early so then i can go get reese right after - where miller promptly falls asleep.

reese has been loving school. the full days are long, but she has been staying awake, mostly ;) its a big adjustment for her to be on the go all day long.

sawyer and aidan love their school days - no complaints from them. so far so good. dance has started up again and so we are back in that groove.

a simple blog tonight. i like it.

Monday, September 1, 2014

if i am being honest.

reese woke up with the crud yesterday morning. by 4am this morning, she had a fever. 101.1 and then 100. and then after i took a shower to get ready to go to the hospital, it was 99.

but i volunteered to go. i got my hospital comfy clothes on. i put on my green sweatshirt that reese always says "oooh i wanna cuddle dat shirt!" and off we went.  i knew that if we didn't just go then, we'd end up in the ER later so we talked about just getting it over with and finishing the rest of our day.

there is something so familiar about this routine. something comforting. we didn't go downtown because there was no risk of having to stay the night. we just went to legacy (the children's satellite hospital up north). but we dont know people there. they don't know reese. i am just another mom who comes in, but still it feels comforting to be there.

i told a friend last night that "i am caught between a state of happy and lost". for so long my identity has been the mother of reese, the child with a brain tumor. as reese's hair grows in, fewer people stare.  the questions are becoming less and less... and all of that comes with great relief to me. as well as paralyzing fear of change. what i once called my new normal became so normal - that i am in the same cycle that i was at the beginning, as far as adjusting.

this cycle is different because, for now, its not surrounded by gut wrenching fear. its not wrapped in tears of sadness and fear of loss of a child. its just... a change.

i want to be clear, this change is more than welcome. but, as i am always trying to be honest, i am simply stating that it's hard.

i miss the people. i miss talking to the doctors and laughing w nurses. i miss running into oncology mom friends. it is a different kind of connection than i get from most people and its that that i miss, at times. i miss the routine i had with just reese. her sleeping on me in the bed, uncomfortably, of course, but it was what we did. we lived there. weeks at a time in some instances.

when you go down to the oncology floor, for the first time, there is a binder. a social worker/oncology liaison sort of walks you through things, but in this binder there's a part about the after treatment. it explains that you will likely feel this way and even at the beginning, i knew they were right. originally, leaving ICU and going to the floor was hard. i was elated that reese felt well enough to do that, but longed for those people who cared about her so deeply that first month. then i moved on to the oncology family that grew each chemo inpatient. so many people whose jobs are to save my child - and yet don't make it feel like a job at all.

each new step towards health is one more step away from that normal. after reese has her MRI on september 15th, we are possibly one step closer to talking about port removal. which is a very big step, to me. you don't go in monthly anymore for port flushes. you don't go in for fevers because, at that point, you are now "normal enough" to just go to your regular doctor. the fear that something implanted in your body thats infected - is gone.

you trust strangers with your whole heart. and soon, they are no longer strangers. the same goes, i suppose, for my words on this page. strangers came to lift me up - and then one day, they were not strangers anymore.

september is childhood cancer awareness month. i am aware. you are all aware. there is nothing more in this world that i would want than to never look back. to never be in the place we were almost 2 years ago... 1 year ago... i want every day to be better than the one before. but we were there - and so many are. every day 42-46 more children are diagnosed. every single day.

none of those people know that one day they will miss the comfort of the lull of beeps from an IV pole. the beeps symbolizing that something is in your child's body is killing bad cells. that you're actively doing something. the beeps that alert nurses that chemo is done can lift a heavy heart with hope. it is hard to be off treatment and wonder. that part of the change is the worst.

but i am happy to be "amanda, ya know, that mom with the 5 girls". not the mom whose daughter has a brain tumor. for now, its nice to feel just like everyone else.

our daily routine has been filled with drop offs, laundry, the gym, cleaning, pick ups, cooking... rarely now is there "doctor".

but sometimes, when there is the option on which parent has to go back to that other normal. the one with ports and blood and hospital rooms and IV pole beeps...

...i volunteer.


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