Thursday, December 18, 2014

the same normal.

i feel good.

we had our appointment today to talk about what we are doing next. 

so we need a few things to start. one of them is a new port. 

i know. that part sucks, but its a necessary evil. 

before that, we need a rapid MRI (ish) to check where they should put the port (because this is her third. if you remember, she had that one that really didnt work and we replaced it spring 2013). and then we'll have port placement surgery.

chemo will be weekly, for a year. its a quick push so its access, blood, chemo, flush, and lock. i might be missing a step. its been a few months... 

a few questions, answered: she will likely not lose her hair, her ANC shouldn't really drop (other counts do - but not ANC, iirc - could totally have that wrong, but i guess i'll know soon haha), she should feel pretty good and stay on her school schedule. there's no inpatient stay for chemo, there's no fluids to mess w sodiums. its a lot like vincristine was given. no, she does not need surgery to remove more, as it stands. no, we are not doing radiation right now. yes, it is an option later down the road if needed after this or other chemo protocols. 

we saw the MRI from september and then from monday. you can eyeball the growth, but its not a lot. is it moving in the wrong direction, yes. so we have to change that. they did say that if it was just left, it would likely be months before we even saw new symptoms of it. of course we aren't leaving it be - but that is interesting to note, imo. 

i saw the first MRI today, too. i think the only time that i have viewed that scan was when we sat down with the neurosurgeon day 2. the second day of our entire journey. its so big and just goes from the optic pathway and then through the side by the hypothalamus, but now it seems all thats left is the piece in between where we had both surgeries. i think it was important to see all of those scans to get grounded - to see how far we have come and to see what we are dealing with. 

our wonderful oncologist gave us lots of whispers of hope and words of confidence. we are very lucky to have the amazing doctors  that we do. 

i mentioned to the girls today about reese's new port. reese shrugged and said "yep. i need a new one!" and aidan and sawyer were just interested in coming to chemo w us at some point. there were a lot of comments on the girls being upset, but i think the difference is that this is just what they know. chemo, the port, hospital stays... it's all part of fixing reese. and so they seem to be totally okay with that. reese doesn't quite understand, but so far so good. taking her in every week will become dramatic, i imagine, as she is old enough to grasp "what we do every tuesday..." or whatever day. but until then, we'll take it step by step. 

a bump in the road that leads us to the end. our new end seems to be in 2016. 

please do not hesitate to ask me any q's you may have. 

the prayers for guidance and peace have been felt deep into my heart and soul over the past few days. and thank you to everyone who has purchased their reesey shirts!! 

it is amazing how different this was. we went to the hospital today saying hi to friends. everyone couldnt get over reese's hair and how she was walking by herself. i wasn't nervous to hear what the onc said because i know him. we trust him. all of these doctors saved reese several times before - so now is no different. 

2 years ago today, i was watching reese eat dinner after having her 2nd debulk surgery that morning.


and then this week, she goes to christmas parties (miller's) and makes me crazy with her sisters around the house. :) 

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i will take it. i will take every single second.

we are still in the same normal, though. for now.

Monday, December 15, 2014

i already knew.

for the past week, i have been, almost, mourning this MRI. before it even happened.

i already knew. 

"she tripped a lot today at school". since reese has been, literally, running around the house, i brushed it off that she was trying to over achieve. but deep down, i knew.

her bad arm has been so awesome, but for the past few days, i noticed it was just not as awesome. i can't really explain it - it still opens, closes, grabs things, squeezes my finger hard, etc - its just... not the same.

when the oncologist called me today and said "it grew a little bit", my world stopped, but i was able to catch my breath, finish changing a baby, and then cry. i had prepared myself. sort of. because no one actually prepares themselves to hear any of that.

but facts are - there are other chemo protocols (and his in words "more effective, even") and he sent everything to our neurosurgeon to see if maybe she wanted a grab at it.

so, we'll meet on thursday - or maybe wednesday if i can move the appointment up - to talk about it all. get a game plan in order for right after christmas.

my heart is broken. reese is perfect. literally perfect in every single way. every day i say "i love you" and hear a perky "i lub you too, mommy!" in return. she knows her letters and numbers and runs around the house "takin' yo booty and put it in da trash!!" she takes care of "her baby" (foxy) and does the same kissing and loving to "my baby" (corbin).

but, in the end, we still have some cells to kill. chemo in, tumor out.

there is a sense of devastation. i imagine she'll get a new port, which will confuse her. i'll be going to the hospital w a kid who understands more. and that alone is enough to make my heart stop.

there is a sense of relief. knowing now, what i thought i knew. intuition is a very strange thing. only a few times in this journey could have not put feelings aside. and there was a reason.

i am ready to start another chapter. only this one ends with no tumor left.


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Wednesday, December 10, 2014


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.

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