merry christmas 2014.

there's a cloud. 

it's not a dark cloud really, but it is there. lurking around the corner. i know that the next few weeks wade between "nothing to do" and "things that are really important" and so worry flows through my veins and thoughts ever so often. i think about her chest MRI for port placement, getting her port, but mainly, just praying that the tumor hasn't grown more and that vinblastine is going to kick it to the curb.




yet, none of that matters today. because it is christmas. truth be told, it doesn't matter any days because knowing there's a cloud doesn't heal brain tumors. but some days, i am more aware - and some days i forget its even around.

EJ is upper respiratory sick - to where his chest hurts at almost every movement. miller has the flu and an ear infection. corbin has the flu. reese is on tamiflu as preventative. no one needs to be at our house to catch this - so it was the skelte-seven today, celebrating alone.

...which is funny that i even typed that; with 7 people in a family, no one is ever alone.

last night we went searching for pizza. we ended up at mexican. a win either way. i drank some wine and brought everything out to finally wrap presents. i love doing things at the last minute - and that is not sarcasm. i shop late, plan late, wrap late, but it makes me so excited.

reese was up early, as always. aidan and sawyer were the next to come down - already begging to wake corbin and miller up.

i took a shower. mainly because i remember how awful that was when my parents did that to me (lol). it made me giggle. but they were up cleaning their rooms making space for what santa had given them.

we really had no misses. my parents brought their stuff by yesterday, careful not to catch any germs. and between all of us, the kids loved, literally, everything.

2014 asrmc xmas from amanda skelte on Vimeo.
^ if you want to watch that, i made that for my parents so they could see some present reactions :) otherwise, pics will be below. my camera died by the time we got the trampoline out and such (omg they are so excited!) - but EJ started building that, until he just was in too much pain. poor guy. AMC wore their PJs most of the day, but reese said she needed "daytime clothes!!" on. and sawyer had to change into her tinkerbell dress the second her new heels came ;)

tomorrow is corbin's birthday - and i'll blog a separate one for she and aidan's big days. but it's amazing to me that my kids are now 8yo-1yo. no "____ months old!" just.... a year. no babies. no babies on the way. and then an EIGHT year old makes me feel so old haha

jan 2nd is reese's chest MRI. i'll have to somehow harass surgery scheduling on monday at the latest to get a port date on the books, so we arent pushed out for starting chemo any further.

so, merry christmas. christmas number 3 with this brain tumor, with the new found friends and prayers. christmas number, oh, 7? since i started this blog. seems so surreal to me to have so many years captured in the same place, but each one so incredibly different. they will continue to be so, since our new end date, for chemo, is now going to be in 2016.

this christmas, my kids took reese's new medical kit, that she got from santa, and had port surgery. reese laid on the floor and "got a new port" willingly from surgeon, aidan, and assistant, sawyer. she got up and said she was "all done!"

next christmas, i hope that she almost is... all done. for good.

the same normal.

i feel good.

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

vinblastine. 

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 ( I could totally have that wrong, but i guess i'll know soon haha ***eta: ok there's a possibility for ANC drop. we will know the first 6w how her body reacts.), 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. :) 

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

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

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.

#gingerfight