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

as a whole.

as a whole, life seems to feel.... good.

reese feels good.

we went for chemo on tuesday. cisplatin first. then etoposide (vp-16). i got there at about 3pm. got a room about 3-4 hours later after hanging out in the infusion room. and then they started chemo at, like 9pm.



one round of etoposide the next late afternoon and we were sent home. high sodiums (about 153?), but we were comfortable handling that. the next afternoon we went back for another etoposide and now we'll just go back on tuesday for labs.



reese has puked a few times a day. we stay on top of it with zofran. one night we did alternate between that and ativan, but over all, it doesnt bother her necessarily. she just pukes and goes back to bed or back to what she's doing after we clean her off and change her clothes.

they say cisplatin's side effects of puking "peak" at day 4-5, so we still have a bit... but she feeeeels good.

she talks, she uses her right hand as an assistant and is much more aware of it, she laughs all day, is sneaky ;), and is just overall so normal.



i made the mistake of watching her "going home" video last night. she was so different. its no wonder that the oncologist is just amazed at "how good she looks!!!" - she was just so weak. didnt really hold herself up, was so... sideways (with her eye and smile) compared to now. all of it was so different.

so today i am thankful of how good she feels. and praypraypray that she only gets better with every chemo treatment.



this past week, ashley and i went around town scouting for new locations. we drove around town with kids upon kids packed into my car.

on thursday night, i let loose. i let aidan and sawyer have a time to remember.

 

today was a fun day, too. aidan had soccer this morning, then dance at 1pm. we went and ate lunch, came home for naps, then i took ASM to the park while EJ took reese to some guy store that i have no interest in ;)

they did their fave thing almost the entire time.... the swings.

 
tomorrow we have nothing, really. hopefully not a lot of laundry puke.

after my vent session a post or two back, i feel better. i feel like we are at a place where we just are getting into a rhythm and its nice.

i wanted to add this, too -- MILLER'S FIRST BIRTHDAY VIDEO!! ***click!!

also, in the IGs you'll see aidan's hair all up and cute for dance --- i don't think i posted this on my blog, but HERE is aidan and 3/4ths of her mini squad performing their dance for only the 2nd time. and may i say, i think she's awesome ;)

and to answer this question, which i get asked a lot:  when is the next MRI? this i am not 100% sure about, but i *think* it is going to be before we start the next round. that will be 2 months. i will ask on tuesday. :)

alright, on to the IGs of the past few weeks!! (punkfictionv4) -- remember the first hospital pics here are from her sedated hearing test to get a baseline (etoposide can reduce high frequency hearing....)