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.

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.

then little steps.

i imagine if you read my blog all the way through, from dx to now, you'd feel like you were on a roller coaster. its cliche to say so, but i do feel what way often. and i hate roller coasters.

we had our 3 month MRI yesterday. it was a long day. i woke up at 5am to get ready. reese, corbin, and i headed downtown by 6am and then EJ took the girls to school. he got there about 830/9? i dont remember. she was out by about 10 or so and then we went to help her wake up. we went upstairs for our "after" appointment. we waited… and waited. first glance said tumor looked stable. alright then. i agreed that it'd be okay if they just called me with the official reading later.

i kept my phone on me. literally. i knew if i walked away, i'd miss a call. i called at 230 or so to say "hey. still waiting!" and someone called me back later to say "they are looking at it now". our onc called us at about 830pm.

basically he said that there were 2 things to mention. one was that her tumor looked stable, which he was happy with. ok neat. i need to remind people, i think, that her tumor doesnt necessarily have to go away. it can just die. ish. so if for the rest of her life we heard "stable", then that would be totally okay. the second thing was that there was some spot, far away from her tumor, that they wanted to look at again in 2 months.

of course my heart sank. damnit.

he said that he and the radiologist looked at it for a long time. they couldnt decide what it was or wasn't. they asked our neurosurgeon to look at it. she didnt feel as if it was something we needed to look at right now. and keep in mind, they have all rushed when they have felt the need to rush. i trust their "wait and see" a lot. he can't tell me its not tumor - because how does he know that for fact. he can't say it is because that would be strange - the location, the chemo progress, the main tumor shrinkage from the beginning (which is impressive for size reduction). he can't tell me it will or won't just go away. remember in december there was weird things on an MRI (not the same as this), but it just went away by the next MRI. i think it was last summer, they accidentally did a spine MRI when they were doing her brain - and a doctor mentioned a spot that they'd look at later - that went away, too. none of this is the same, of course, but just to say who knows.

i find it very hard to believe that my talking, walking, joking, thriving almost 4 year old is some how, not…

anything is possible. so for that we just pray. he can't tell me we won't need more chemo. there are more plans and protocols if need be. i just don't really want to need them. i joke about staying on chemo forever, since the feeling of losing that safety net can take my breath away. then i am faced with a half second of thinking about more chemo and i immediately regret any alternate comment.

worrying does me no good. not one smidgen of help. so last night i let myself be sad. and then that was that. i took my sweet girl who desperately missed school to her favorite teachers and friends, today. when she got into the car at pick up, she told me they went outside and played on the swings (which by the way, she never used to do. she hated the swings. i figured it was bc of the tumor). then she told me they had an egg hunt ::sigh:: what a fabulous morning.

2 days ago, i had some sort of… daydream. i had set myself up for something amazing, which i rarely do. i thought to myself "what if he said it was just gone? what if her tumor just disappeared?" and i think thats what was so hard - i had been living in some sort of "whoa, look how awesome she's doing" bubble - that the pop, was difficult.

but tomorrow, she goes to school again. and then again on friday. like a normal kid. next tuesday we will have our "last chemo". i will celebrate. we all will celebrate. we'll have another MRI in mid-june, assuming all goes well in may, and then figure it all out then. or not… maybe there won't be anything to figure out.

for now im going to go pick out which photos i want to order of reese's first school photos. i am going to relish in the giggles i hear upstairs as aidan is sleeping in reese's room again tonight. and i am going to try to remember that i cannot change things by being worried or sad. we can only enjoy every moment with each of our kids. which we'd be doing no matter what the MRI said. no one is guaranteed tomorrow.

hospital rambling.

again we came into chemo sick. last month, it was an ear infection. december was filled with the encephalitis/meningitis debacle. this month, i could tell she was getting crankier by the day and then BAM! sick.

they moved her tuesday in-patient chemo to thursday bc there were no beds. we got here and i mentioned, prior, that she said her shoulder hurt - so we did xrays to make sure her port didnt move or anything. all looked fine. her ANC was 13,000, which basically indicates sick. we just assumed virus. i am not even certain she would have made counts without being sick.

by thursday evening, i was super confused. she had faded very quickly.  her shoulder area still hurt and she was just not herself. attending told us to keep her NPO (no food or drink), if she was like this in the middle of the night, so we could do an MRI fri morn.

they decided to do a virus test to rule things out and that was it -- RSV. annoyingly enough, i had taken corbin into the pedi on wednesday for her cough. so we have had to keep an extra watchful eye on her breathing, as well. so far so good - just a lot of coughing up phlegm.

as for reese  - that meant we did not need an MRI, since we found the root of the way she was acting.

this whole weekend has been… stressful. reese doesnt do anything normal so its just ::shrugs:: and guesses and preemptive meds.

her normally cold and purple ish feet were warm and red. so guesses of sepsis/cellulitis floated around. they gave her abx just in case. then that was disbanded as a possibility. her arm still hurt so we had another xray. totally clean. her HR was high from the RSV so they gave her more fluids - which just made her sodiums go higher. which is then only solved with NO fluids (so she will drink. she will *not* drink when she has maintenance fluids). she had a fever so along with abx, she got more steroids.  which has made her an angry bear. she started getting itchy - then a stronger rash formed. i think it was from the abx, honestly, even though they say probably not. whatever, she's getting benadryl. at one point her port wasnt drawing back. she doesnt really eat here and so she also needs to get potassium. something that helps one piece usually seems to harm another. such a balance.

one kid in the hospital has always been a double edged sword. being the parent at the hospital is nice. there's… control. youre not waiting to hear updates, youre not texting reminding the other parent of things you wanted to say to the nurse or dr. but youre also not sleeping. and its stressful to cater to a 3 year old kid on steroids. its even more stressful to be the parents making decisions and having to remind doctors how well you know your own kid. not nurses, not attendings… just the middle ground.

being at home is fun. its fun to take the other kids out. to hang out with the big kids on a smaller ratio ;) you arent having to talk to medical professionals every hour - you just hear what you need to know. but, again, you dont sleep. your whole family isnt together and thats disheartening. i get sort of… lost… at night without everyone. i just sit around watching tv too late and then finally crawl into bed hours later than i should have. then i also worry. EJ tells me things that are happening and i tell him what to do - even though he knows what to do. or already did those things. but its that type of scenario when you feel like you have to say it bc WHAT IF YOU DIDN'T!? annoying, im sure lol

and the stress doesnt end. yesterday evening, we facetimed bc she was so upset. i had EJ "pull hair" to calm her.  then again at 2:30 this morning, i facetimed her to sleep. she always wants whatever parent isnt there, of course.


and then it gets to the point where she feels better, but we have to finish things off. wean off some 'roids, finishing abx, check blood level in case she needs a quick transfusion… but at that time she wants to leave. "port off!!" bc she wants to go home. nothing is fun anymore. she gets bored. with things like RSV, we cant go play anywhere - and i cant even sneak her out of the room. she has no interest in playing with toys. and sometimes wants the TV off bc that means we are staying. its frustrating for her, but she's at that middle age where she understands, but not fully.


yesterday she missed the 80 degrees weather. the other kids played outside from the second i got home until past normal bedtime. reese missed aidan's morning soccer game, which she loves. and today it's icy. its 25 degrees or so and the roads are terrible for driving. i can hear the ice pellets on the window, here.


but soon, now less than 12 weeks as we were reminded by her oncologist on thursday, chemo will be done. i joked "it doesn't have to be" and he smiled and reminded me why you dont want to live on chemo ;) and also kind heartedly stated that he feels "this amount of time on chemo will be the perfect amount of time".

i will be lost when we arent in the hospital. when we dont see doctors extremely regularly. when there isnt something actively killing cells in her brain. when her body has to work it out on its own. when God hears our prayers and her body does those things beautifully and seamlessly.

we should be going home tomorrow. maybe the weekly vinc before we go. maybe some blood. then it will be tuesday. 11 weeks to go. so many plans for the summer. for the future. i can't wait to brush her hair again. we're going to the beach this summer with Lighthouse Family Retreats. from blog links to e-friends to random searches, i have known this family since fall 2012. diagnosed the same day. birthdays days apart. a mother who just "gets" me and has the same very expensive momcology degree - paid for in tears, heartache, experience, and, yes, dollars. and a family who will be with us at the retreat. the kids who we have talked about for almost a year and a half will play in the sand together. the mom who ive texted, late at night, to just hear someone understand what im frustrated or upset about, is going to sit on the beach and drink wine with me.

these are the types of plans that get me through the wonder. these things will get me from after-chemo MRI to the next. so i continue to plan.

reese should wake up from her afternoon benadryl induced nap soon and i need to pump. but hopefully, tomorrow, her nap will be in my bed, instead.

follow us on IG: punkfictionv4

i swear i am real.

for a little over 4 months, i have driven thousands of miles back and forth to dallas children's hospital. 

i have had more than 5-6 hrs of sleep about 3-4 times. one was in the hotel at aidan's dance competition. it was amazing. 

i answer to a 2.5 year old all day. and she yells. she wants crackers. but we don't have the crackers that she wants. right then. we have the crackers that she wanted yesterday. ok then how about an oatmeal bar? oh, well, it seems sawyer at the last one for breakfast. ::reese'splosion::

i can't throw away diapers, ever, if im out. i have to take them home and weigh them. i mean, maybe i could not do that, but we're kind of anal about ins and outs. so i do. 

when i am at home from the hospital, i still have 2 children who have school, dance, and attitudes. and 1 child who wants to take naps when i am having to do those activities. she also has an attitude. 

i have zero time to do laundry. or rather, i do laundry all the time -- its just the same load that i keep re-washing/drying so i can take it out and fold it. but then i forget bc we're at therapy or school or something and then i have to re-do it again. so by the time thats done, i have something else to do. so now i just do a holyshitton at one time. then we all put it away. eventually.

i feel like i talk about myself all the time and i hate it. but in actuality, its just that people ASK me about whats going on all the time. its not like i can say "oh nothing" like i used to. bc there is always something going on. so i try to make it short and sweet and not sound callous about it all. bc i am not - i just dont want to take over the few mins i actually GET to talk to friends. 

...minus ashley and brittney. and my mom. they can get over it ;)

i want to go on a date with my husband. and its not that i can't - bc there are qualified people willing to babysit. we just won't. not yet. reese would get upset and then id worry about that. and we'd think the whole time that she is just yelling for us.... but reality is that she'd prob be just fine as long as the sitter pretended as if she was reese's butler.

giving reese medicine is world war 3 every time. she hears the words in conversation and says "nooo!!" but in the end, we win. she takes them, but she puts up a fight. i think she accepts the ddavp shot 100x better than knowing liquid meds are coming. and they don't taste that bad lol

some days, i count down the minutes until bedtime. bc i just don't feel like talking to anyone anymore. there's so much noise all of the time now. i dont know why it seems that way lol

i miss the gym. i miss my friends. i miss working out and feeling energized for the day. i feel like a frump and then act like one, too. the classes i went to are at 9/10am and now we have PT/OT/ST at those times 3 days a week. and then chemo on tuesdays. so friday is all i have. but its not like i can bring reese to the gym so.... anyway, i signed up for another gym bc they have 8pm classes and they let you try it out and i was so "wahhhh" about it bc its not like LTF and so i'll prob just complain every time i go. hmpf.

i have to plan showers. if reese is sleeping, its in my room so i dont want to go in and possibly wake her up while sneaking into my bathroom --- or drying my hair. so i have to plan them so she can be awake and can just sit on the floor and hang out while i shower. bc there's no where else to put her really. at least no where that she'd like. but i don't want to take one first thing in the morning bc im tired. and plus thats when EJ showers. 

its kind of like having a newborn. 

like at 4am, when reese wakes up for some reason, its sort of like when you have a young baby who wakes up to eat. if you talk too much to them, they wake up. if you turn on too many lights, youre effed and now they think its 8am. so thats how i feel at those times. "STOP TALKING TO HER!!!" when EJ tries to chat it up with our very sleepy 2.5 year old. sigh.

all of this to say "i am a real person, too." i pride myself and how we handle each day. im organized, im generally stress free about everything - but that doesn't mean i dont have things to complain about lol i just... take everything in stride for the most part. but sometimes, i do get sad for my old "easy street".  

i want to take reese to the park and watch her climb all over the playground. i want to go to the zoo without wondering if thats too much crap debris in the air and think "should she wear a mask?". i want to be able to go to more stores than just 1 with reese and miller bc that one store has 2 baby spots up top - and its just easier that way. petty things, of course. but meh. 

but then i remember a few things --- i have a very happy and soon to be very healthy reesey. she is thriving. and she is here. alive and happy. here. 

i have a very wonderful husband that takes care of our family. who takes care of me. who works hard and then comes to the hospital to swap me out. 

i have 3 other children that amaze me every day. their sweet souls, their hugs and kisses, their love for reese.

i have family in town who help me at the drop of a hat. no questions asked. i have friends who let me come over bc i juuuust need to see another adult face to face for a few mins. and i have prayer warriors around the world who love reese so much.

right now all i have is some IG (punkfictionv4) photos. my "real" photos are all about miller's bday (feb 6th) and i'll post all about that soon :) we've sort of spread out miller's birthday a lot due to a drop in ANC for reese and reese's random hospital stay (thurs-today) because of a consistent 99-100deg fever and an ANC of zero. but she is home now and asleep cozy in bed with EJ. i will follow them soon. 

bye bye 2012.

i have never been one of those people to wish a year away. with the girls growing up so fast, i hate that each of their birthdays come so quickly and i get teary thinking of how old they are getting. aidan turning six was, like, ::eyepop:: since 6, to me, is just... so old.

2012 started off rough. last january, my parents got into a horrible car accident. and, truly, are only here bc angels were watching them. since then, we found out that the kid had cocaine in his system when he hit them.  you can read, but driving to the hospital after they were loaded into ambulances, was the first time in my life that i sat there and thought "i may lose someone i love..."

i thought it would be the last for a while, honestly. a very long while.

but it wasn't.

2012 had amazing things happen as well. miller was born. [more pics in this blog post]. she completed me. my sweet baby who just... ::swoon:: she is happy all of the time.

i took them out in march for bluebonnet photos --- pics of the 4 of them, finally, but in reality, miller was too young and reese would run down the hill the second i took my eye off of her lol

i watched reese's love for miller grow every day. im not surprised at how amazingly giggly she gets, now, when miller just comes into the room. "NILLERRRR!!!" as reese says... its been like that for so long.

in may, i took a trip to ohio to see some of my BL girls. some of my best friends. i took miller and aidan with me and left with memories for a lifetime. that wkend was an odd one here at home --- reese puked, for no reason, for most of the wkend. we thought it was dairy - which would have been odd. but now it makes me wonder if it was a "sign" of something to come.

may was also reese's 2nd birthday. my funny baby. we had a party where she stole the show with her hilarious faces and 'tude. and i took her out for photos with the one thing she loves more than anything --- her "laylee"

june brought the heat. the horrible heat. we cooled off by the pool. reese [look how tiny she is hereeee!!!] stole chips -- liiiike she likes to do ;) and we had such a hilarious time tossing her into the water.

4th of july was a ton of fun - we went to the parade and then went and watched fireworks. i got them all decked out in coordinating outfits (lol), like i do, and couldnt wait to see their reaction.

sawyer also turned 4 in july. ohhh sawyer. my sneaky, sassy troublemaker. i think she thinks she is 16. that blog entry also has one of the most hilarious pics of reese everrrr on it.

we lived up august like it was meant to be --- winding down and just relaxing. having fun before school started again.

but, of course, that came to an end for aidan was she went to kindergarden. :cry: the most bittersweet day ever. she is thriving so much in K. she reads, she gets awards, she is a leader... the teacher adores her... she is just so happy.

aidan and sawyer both started dance this year, as well. aidan is really good. truly. watching her really makes me so proud. sawyer makes me proud for other reasons ;) she is so quirky and funny. and just loves to shake it - no matter what anyone else is doing haha

sawyer and reese started preschool in september. for sawyer, this was old hat - her 3rd year at this school. she's a social butterfly now and i just cant believe how amazingly she has grown in that way over the past year. she used to cry when i left, but this year - no way. for reese, this was her first year  - and it was not going as the other's did. reese, unsurprisingly, just wanted to be left alone to do her own thing ;) ironically enough, the day before we found out about her brain tumor, i had talked to the school about just pulling her out for a while. she had been so sick and missed so many days... i didnt want to just drop her off to a place she didnt know that well....

we also went to the plano balloon festival in september. from sept 2011 to the day we went in 2012, aidan and sawyer talked about the 2011 PBF. they just adored it. it was magical to them. so we couldnt wait to take them again this year... and next.

october brought more of the daily grind. which was fine by me. until reese started to get sicker. she'd get better for a few days and we'd go back to being the silly skelte 6 that we have always been.  and then.. bam... something else. when we went to the pumpkin patch, she just seemed so tired... little did we know, right?


....and now we're caught up. caught up to where we were hit with the worst news possible. caught up to where i felt that "lost" feeling.

but those arent my only feelings about the past few months. i felt love. true, unconditional love. i felt support. i felt faith.

"for I know the plans I have for you," declares the Lord. "plans to prosper you and not to harm you, plans to give you hope and a future" -- Jeremiah 29:11

^^^ that verse has been written to me a hundred times over the past few months. and each time i am grateful. then last night before i went to bed, it was baylor university's facebook status for the new year [sic 'em]. of course it was --- bc its exactly what i need to remember in 2013.

i will wrap up with some weekend IGs [punkfictionv4]. reese came home after an long wkend for her first in-patient chemo.