things I always say.

She is so small at night time. 

During the day, Reese is a solid 44lbs. The scale at the hospital says 20kg and that is exactly what she feels like. Being only about 39" tall (that's 1%ile, finally), means she often feels as if you're picking up a bowling ball or what I would assume slinging a sack of potatoes would be like.

But at night, her entire face fits in my hand. She can lay on top of me and fall asleep and it feels like nothing. If she sneaks down into our bed, she curls into a tiny ball that seems to match the exact space between my shoulders and hips as I wrap my arms around her.

My face doesn't fit in her tiny hand, though. She cups my face when I talk to her when we're cuddling and the proportions of child and mother are so skewed.

Her MRI is next Tuesday. I have mixed feelings, as being home with the kids all holiday break gave me time to worry about things that aren't necessarily there. More time spent at home means more opportunities to watch her run or open and close bad arm.

She tells me everything from school, now, so "oh, I tripped on a chair holding a bucket" doesn't make me think she's a silly girl who couldn't see because of the bucket, but drives me into a sort of spiral of nervousness.

But, either way, I have a plan. By I, I mean we, by we I mean her doctors. So, tuesday will either make us stay the course or veer towards something else.

I have spent days simply writing this post and I don't know why. I don't know if it's because I am beating the same drum that I always do - and can't think of another way to write it? Or if I just don't want to deal with my own emotions right now? Sigh.

Aidan has her first dance competition of the season this wkend - and her first solo ever. She makes me so proud - even when she wades between hating everything I do and crying that she needs her mommy. Sawyer is rockin' school so much and my heart swells for how much she has grown this year. Miller spends all day doing what she does - being herself and not caring what that means to the rest of the world. She dances in public, wears what she wants... which reminds me of a tiny sawyer and that makes me excited and nervous for the future years. Corbin talks all of the time with adds "me too!!" to anything the other kids are doing. She copies what they say, makes them laugh, and is my daily bff.

There are other things I just want to write down, I guess - like how reese asks me "did you has a good sleep?" when she wakes up in the morning, or that her favorite breakfast food is sugar free popsicles. Or how when we go to chemo, she doesn't even need me around and tells the nurse "you tell my mommy to stop talking?" when I tried to update her on what we're doing.

I am having to remind myself to live in the moment, recently, instead of for bed time. After bed time, I have immediate daily regret and vow to slow down the next day. Some days I succeed. Some days I go up after they are sleeping and curl into someone's bed in hopes they thought the day was better than I did... and that they maybe wake up and see that I am always there.

round again.

Scanxiety is a little different now.

Reese's MRI is in 2 weeks - Tuesday the 27th. We go to the pavilion at Children's this time because they are doing something at the main radiation spot. I already am annoyed that things are "different" than usual, but for MRIs at the pavilion, I can be with her till she goes to sleep. That being said, she doesn't care about that because she loves the gas mask. Also, the last time that I did an MRI at the pavilion was December 2012, before her 2nd surgery.

I don't really worry about the MRI the same way as I used to. I have heard it all, now, and am vaguely prepared for most of it. I have spent almost 3 years now educating myself on protocols, mutations, surgeries, laser options, timing and speed of growth, and so forth. I have spent months hearing "shrinkage". I have heard "stable" for a long time. I have heard "growth" as well as "looks stable ish" throughout the past year. Really, I just want to hear what they have to say. I am almost counting down the days to the MRI because I want to know what the plan is. The plan may be as it has since January.  I hope so, anyway. But if it is not, we will move on - and Reese has been practicing swallowing pills in case we move to dabrafanib.

Yesterday, she lost her first tooth. Whoa...

We had all been wiggling this tooth for weeks. I was in disbelief, honestly, that she was old enough to lose her first tooth. I am downright giggly to tell her doctors. I don't know if they thought she'd make it to the age where she could lose a tooth, 3 years ago. But last night the tooth fairy came and this morning was magical. Then I got an email from her teacher on how the entire class was excited for her... the whole day melted my heart. Reese told me that one of her friends chose her for "eat lunch with a friend" and I cried. I legit sat there and cried happy tears that she is so loved.

Things are so normal and not normal at the same time. This is how I always thought my life would be  - taking kids to school and preschool and another kid at home. Going to dance and soccer and meetings and girls night out. But, then on mondays/tuesdays, depending on the week, we have to stop that normal life and head to chemo. I am still that mom that talks about things that makes everyone halt for a second to hear "oh, sorry, my daughter has a brain tumor" because otherwise the story doesn't make sense. All of this is okay. I understand that the journey we are on is years long. Years past today. That is okay, too.

As we approach 3 years, I think about how far we, as a family, have come... grown... sticked together. All of it is okay.

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scanxiety.

sometimes i type things out on brain tumor pages or to friends with brain tumor kids that i only wish my own head could grasp.

my heart does. but my head lags in that department. 

i tell people not to worry about scans because nothing changes the outcomes (i do.)
i tell people to let things go and live day to day all of the time bc life can change at an instance (sometimes i fail at this.)
i tell people to trust their intuition (yet i doubt myself, often.)

i don't know if i do say these things so often to people because it helps my own brain lean towards those ideas by the power of persuasion in a way? i dont know.

the week leading up to an MRI, you see everything.

your child walks worse. they talk worse. they blink too much. they don't blink enough. they stare into space. they sleep too much. they don't sleep enough. they look like they might feel sick and aren't telling you. oh, wait, they just have a cold. they used to know something you asked. your child must be losing their memory. you cry in the car more often than normal. you may throw up throughout the day. some days are awesome. you're grateful. then you're not because maybe you should prepare yourself for bad news. what would i do if they told me bad news? i would keep it together with a game plan. i would throw up for days. i could pick myself up and handle it. i would fall apart. i would do what i need to do - because i would have to. the weight of it all is unbearable at times. catch-your-breath-overwhelmingly unbearable. your chest can feel like it almost collapses with one simple thought.

you go to the MRI and you've hyped yourself up for days. everything seems normal - you see doctors and nurses you know and do the same thing you've done two dozen times. weight, height, go over meds, get a gown, impossibly distract your child from needing to eat or drink. you go and wait. this MRI is definitely taking longer than normal. it's because they found something. obviously. well, wait, i guess its not that much longer...

if you are lucky enough for an appointment after, you'll clean yourself up if you've thrown up breakfast in the hospital bathroom and head to a clinic room to wait with your post-anesthesia tired, crabby kid. maybe put on the tv, play on the ipad, chat like normal. you try to answer 17 texts from sweet and curious friends wondering if you have results yet, but after a couple, you feel exhausted all of a sudden. you might be there with your husband or wife. you might be there alone. but waiting is definitely better than going home right away. or maybe its better to just wait for a call - where you can forget things for a few hours. but it doesn't matter because here you are, waiting.

we keep our door cracked because for some reason, i get so hot in that room. i hear oncologists talk to other patients, but only that one and a half second that they open the door to say "good news!" to kids waiting on their own results. i get reminded that we aren't the only people waiting for results - she isn't the only sick kid around. i tell myself to feel blessed. then i need to throw up again. i shut the door.

eventually reese falls back asleep and i wait again. playing on my phone. pretending i am not where i am.

then you hear a quiet knock and the door handle jiggles. 

that next half of a second, your entire life comes to a head. everything you know could come crashing down with the next sentences that you hear.

if you are lucky enough to hear good news, you feel good. 3 more months til the next MRI. you feel good for a month, maybe 2, then it will start all over again.

that. that is scanxiety.

for some reason, i am dwelling on this one. i felt very confident in september - and i have no reason not to feel the same way on monday. yet, i do. we've taken her port out now. maybe i've felt too confident. it all seems too good to be true.

worry is the thief of joy. i know this. so now i am choosing to forget that 2 years ago, this friday, we were told her tumor was growing, that we'd need another brain surgery. i am going to try not to focus 1 year ago when she was in the hospital with some sort of infection that we spent days trying to figure out with such low temps and heart rate. i am going to spend all of my energy praying that the days leading up to christmas are spent at home making craft ornaments and wrapping presents - and not at the hospital w wishes to make it home in time for santa.

praying that, again, reese's tumor is stable. please pray for the same.