the little things.

tonight sawyer came up behind me, while i was sitting on the floor. so i grabbed her and flipped her body over my shoulder and tickled the heck out of her. she wiggled on the ground in hysterics until we finally did it again.

reese wanted to try.

less than a year ago, i couldn't imagine doing things like this. i held her like something so delicate, then. But tonight she climbed up to standing, held on to my shoulders, and i flipped her over into my lap.

recently, reese crawled into the shower while it was on. she let her face get wet. let it splash on her head. she drew pictures on the steamy glass door. taking showers was reese's favorite thing in the world to do, before dx. it was her play time, her calming time, and then she hadnt taken one since.

she takes steps with only holding our hands now, regularly. (vid on reese's FB page www.facebook.com/gingerfight from my IG)

she does not cry, ever, when i drop her off at school. she happily goes to whatever sweet teacher snatches her up that day.

she is able to tell me actual stories, now. things that happened at school. she remembers things to tell me later - and spits them out, like word vomit, the second she gets into the car. "miss ma'shell no let me have my tape measures!" reese, i told you, they have to stay in your backpack! "yeah, school say no to me!"

and knowing that all of that probably happened hours before is what gets me so excited. its a huge deal, to me. i cried when EJ told me about reese getting into the shower. its the small things that get me from MRI to MRI without needing anxiety meds lol

"i wan' cuddle corbin!"
"meow."
"i eat like a puppy?"
"uhhh no, mommy."
"go awaaaaay ____."
"another burp is coming!!"
"mac/cheese at sonic? noooo..."

every.tiny.phrase. i can hardly pick a favorite.

she knows when she is funny and when others are joking. she is aware of humor in the best type of way. so often i forget that she is GOING TO BE 4 YEARS OLD in may. omg. ::faint:: how did that happen? miller had a shirt on today that i have a photo of reese in right before halloween 2012. and yesterday she had on a dress that reese wore for her 2 year pics.



how was she ever as small as miller?

i dont even know what this blogpost is for.

during the middle of writing this, i got distracted by "mommy?!" calls from upstairs. "i wan' cuddle mommy?" so i think i lost my train of thought. though while typing, i have enjoyed the trail of photos from before her hair was gone - and laugh about how she looks JUST like herself before 1 year old - when her hair hadnt come in yet. she hasnt changed at all.

yet so much else has.

FAQ: revisited.

here is the original FAQ - the first few are just c/p since the information didnt change. the rest is different.


what type of tumor does reese have? where is it located? why didn't the NS get it all the first time?

she has a pilomyxoid astrocytoma. originally, her first craniotomy was to get the piece that was behind her eyes. there was a whole other section on the left side of her head. the only part of the tumor that was causing problems, originally, was the part that she got out in the first surgery -- it was blocking fluid flow, so reese ended up with hydrocephalus. from the point of entry for that surgery, there was no way to get the left portion, but at that point, there was no reason. it was just sitting there, not angry [yet].

why did you first take her in to the hospital? what were her symptoms?

hindsight, there were a lot of symptoms that seemed to be covered by a different diagnosis. her right hand not really moving was supposedly bc of an elbow break and then radial nerve damage. the vomiting and high HR the week before we went in was supposedly bc of a UTI and the meds to fix it. she had a slightly awkward gait and still "toddled",  but gait isnt settled for a bit longer so that was pushed to the side as well, she was an amazing sleeper - like 13 hours at night plus a 3+ hour nap, she had, what we call, a "popeye" smile with her left eye a bit snarky looking ;), she was, to put it nicely, overall agitated at times and very "get out of my face", but since that seems to be her demeanor now, as well (lol), i believe thats her honey-badger 'tude.

but the tumor presented itself, officially, with her left eye floating inward on halloween night. all of those other things may very well have been what was stated. in the end, we'll never know chicken/egg.

the reason her eye floated was because of the fluid in her head. you can see on my IG (punkfcitionv4), in older photos, that she looked very weak... likely bc, when we went in, her heartrate was very low - before the first surgery, it was in the 40-50s.

how is her DI?

she doesn't have it. essentially.

we have to watch her sodiums because they do jump. but we do not need the DDAVP anymore. she hasnt had those shots since last march. when she was hospitalized in december, we were ::this:: close to  giving her DDAVP bc her sodiums were up in the 160s. but her body figured it out on its own.

one of the amazing oncologists told me once - "i have been doing this for a long time and do you know how many kids have *stopped* having DI?…. ::points to reese:: one."

what meds does reese take daily?

keppra (2x/day) - she got on this after she had a seizure in the hospital. her sodiums dropped really quickly during her original DI flip/flops. Also, they upped it, back in december after they did an EEG as a precaution, since it wasnt the right dosage for her weight anymore, anyway.

hydrocortisone (3x/day) - the link explains it better than i could, but its to physiologically match what her adrenal glands should normally make.

synthroid (1x/day) - this one is to help with her thyroid. this, HC, and DDAVP are our endo synthetic drugs. to make her body think that her pituitary is still dang normal ;)

septra (MTW 2x/day) - an abx that she takes 3 days a week while she's on chemo.

how many surgeries has she had now?

she's had the first craniotomy, then she got a shunt, then her port put in, then a shunt revision, then her 2nd craniotomy. in spring2013 she had port surgery, again, because the other came out. in the summer, she had her oral surgery to remove teeth and cap others.


what type of chemo was she on? what types of chemo will she be on now? what is the schedule?

so for 4 weeks in a row, reese was on carboplatin and vincristine. that combo was the one that did not work.

her new chemos are:

1.cyclophosphamide
2. vincristine (still.)
3. cisplatin
4. etoposide/VP-16

her schedule goes like this.

week1/day 1 - 1/2 (in-patient)
day 8 - 2 (clinic)
day 15 - 2 (clinic)
day 22 - 2 (clinic)

week 5 - 1/2 (in-patient)
week 6 - 2 (clinic)

then 3 weeks off for her counts to rise

week 9 - 3/4 (in-patient)
1 day later - 4 (clinic)

then we start all over again. the regimen that i saw yesterday had this going for, like, 72? weeks or so. i have been saying march (lol), but it seems as if i am wrong. bc that does equal 72 weeks/16 months or whatever it is. so i think its may. lets be honest, my brain is fried ;)

side effect wise, reese does really well. she has an awesomely bald head and no eyelashes or eyebrows ;) she does puke with chemo, but with a zofran pump and ODT zofran, she does really well.

do you do anything *natural* with her?

we limit her sugar intake fiercely. she does get "treats" sometimes, but its rare and small. like, if they all want ice cream, reese gets a cone where the ice cream doesnt even come up beyond the tiny cone. and she's okay with that ;) luckily they make a lot of sugar free items that she can have as a treat, as well. you can google, for yourself, sugar and cancer cells.

we dont do oils or anything. some of those can interfere with chemo. so better safe than sorry.

with her blood counts being low - what can you do? can you leave your house? does she wear a mask?

***i am copy/pasting this from the original post, basically.

ok. you will see reese at target. you will see her at school pick up. you will see her at PT/OT/preschool. you will see her around town living life. bc its OKAY to do these things.

as quoted from the oncologist when i re-asked these questions, knowing this chemo was more hardcore -- "everyone has bugs in their own body. reese is more damaging to herself than the outside world. GO to her therapies, GO to the store, GO anywhere you'd like - be smart and wash your hands. and dont let people cough directly on her". lol

our home has 5 children living in it. 4 of which go to school (including reese). besides reese having more damaging things in her own body to fight than a kroger cart, ASM will bring those germs home.

if i wanted to feel better, she can wear a mask out (which, like someone said to me -- is more so people think reese has something THEY don't want to get, so people tend to stay away). she doesnt have to wear that blue N95 mask, though - that is for around construction (which is why she has to wear it around the hospital). just a paper mask. and if she is having a fighting day where she takes it off for a bit - that is OKAY.

staying home and laying around is not conducive to her healing (or her sanity). she has to keep moving. of course there are times where she is relaxing - but keeping her body from just... sitting/laying all day is what helps her physically. the blood has to keep on flowing.

the main point is that, while she wont be playing in the CFA play area, she will definitely be out with me as often as she'd like. its not "safer" to stay at home.

***adding...

now that we have been doing this for over a year, we do normal things. all of the time. we go to labs so often that we know what her counts are from week to week and, generally, if they are going up or down. we try to stay in during low counts and otherwise, her ANC is like everyone else's.

what physical limitations does reese have?

reese cannot walk on her own. well, not totally. she has a rifton gait trainer (hot pink. boom.) that she uses when she wants to ;) but she can also take steps on her own when prompted or when she is in the mood to show off.

she can hold your hand(s) and walk "with" you - usually best if she is wearing her AFO boot.

otherwise, she scoots. she is fast, too ;)

her "bad arm" (right) is her helper arm. she can open and close the hand (when i first wrote this, her right hand was dead) and she can move at all points. it is not full functioning, but OT has helped tremendously.

does reese know whats going on?

sort of. she asks when we go to her doctor if they are going to "do my port?" or "get blood?" meaning in her arm. she trusts when i say that we'll do her port and then get a bandaid and go home. or if i say that we have to stay, but will go home the next day. she has bandaid preferences and if she wants cream or cold spray. she knows how to do her BP and get weighed in. she has things she loves to do in the hospital and calls her IV pole her "beep". when it goes off we say "shhh beep!! shuddup beep!!" and laugh.

she, however, pretty much has no idea she has no hair. she says aidan and sawyer made it pink. and i think now its a mohawk? she has us "put it in a ponytail". but on the flip side, she sees pics of herself and knows thats her (without hair) and ones with hair she *usually* thinks is miller.

does reese have favorites?

the color pink, bubble guppies, umizoomi. carrying her tape measures. not wearing pants. getting people to "pull hair" (it just pops out. she loves the feeling, i guess. it calms her, actually). playing jokes on people and making people laugh. she loves her laylees and sawyer's "chloe" (another blankie). she continues to love putting things in sandwich bags. and likes a heart to be written on the inside of her hand. mickey's clubhouse is a list topper, but she "hates doc mcstuffin". she also hates the color orange. she loves mac and cheese, chicken nuggets, and "daddy cereal" (multigrain cheerios). 

***i moved reese's fb page to a different format so then i dont miss what people post :) so come and catch up with reese HERE. https://www.facebook.com/gingerfight

thank you, as always, for loving our sweet girl.

better today.

im sitting down after re-heating my 2pm coffee, three times, so far. there's no school today because its president's day. i have cuddled on the couch while watching thomas, taken reese to PT, gone to the store with the others, let them play outside, i have prepped dinner, i made oatmeal and fruit breakfast bars. i have emptied the dishes from last night, re-loaded, and washed the dishes again. i started the laundry (re) ran the dryer, and swapped it again.

plans for the rest of the day include finishing naps and then going to aidan and sawyer's dance classes. then actually cooking dinner.

i only say this to explain to you that i am trying to get things done without stressing. without yelling at kids who aren't listening. and without guilt. i am trying to have a better today.

sometimes the guilt is deep down where i can't feel it, but sometimes its right at the surface and appear with tears down my cheeks.

i have guilt that i will do something today that i will regret later. that if something happened to reese, i will think to myself "i wish i didnt tell her she couldnt have ____ that one day. what was the point in that? why did i care?" the answer is because she is a 3 year old who needs boundaries. we've been told, up front, by doctors to treat her as "normal" as we can. i have guilt that because someone else needed something, another kid is wondering why i tended to that child first. when in reality, i make an effort to make sure that rarely happens. or i try to talk to the other child, afterward. i have haunting thoughts on good days that we may lose those days all too quickly. i feel guilty for sometimes being stressed and wanting to spend evenings, in quiet, alone, after spending an entire day answering questions from children 7 and under. after chatting about nothing adult-like. after being so touched-out, that i just want to sit in a bubble for a few minutes.

the guilt is opposed by appreciation. appreciation for my 4 perfectly healthy kids. appreciation for every day i spend with all 5 of them, together and the 7 of us, as a family. appreciation for reese's health and for what she has, so far, overcome. appreciation for being able to stay at home with them, every day.

sometimes i want someone to just tell me how to feel.

but instead, i end up stressed about things i can't control. i try to win a waging war of my emotions and direct them to a certain feeling. i cant feasibly do it, but i try. i get sad about things that haven't even happened, but possibility can sometimes beat out probability in the mind of a mother whose child is sick.

i love reading other bloggers' journeys, but this week was especially hard. two children became angels. i was reminded with abby's family (as i was with phoebe's) that sometimes there's nothing more a doctor can do - so you have to wait and soak in as much as you possibly can, when you can. jennifer's family reminded me of the horrible questions that some mothers have to ask themselves. i'd read and ask myself the same things she did --- "would i keep all of reese's laylees if she died?" "what would she wear?" other questions that i dont even want to type [but you can read them on her blog]... then, hurriedly, id click off the screen and come back to finish reading the blog later. no one should have to wonder those things.

when i feel like reese is doing awesome, and some days i just want to shout on the rooftops "she will be healed! i know it!", i am knocked down by some sort of symbolic punch in the gut that says "you never know..."

if im being honest, i should have felt those "fleeting moment feelings", more often, long before reese was dx. but sadly, its hard to feel emotions about having things possibly taken away, without your life coming to the edge for a bit... then slowly backing off the edge into some sort of normal that resembles your previous life. only at that point, does it seem, that people start embracing every day.

no one told me that i would be flip flopping between those happy feelings and, then, negative feelings, along the road. sometimes i resent how busy i am and that no one around me truly "gets it". then i feel selfish for even saying that. everyone is busy. they have their own "busy" and who am i to say that they don't "get it".  who cares how busy i am, anyway? i am doing it because i love my family and my kids, who are happy. i also don't really want anyone around me to understand this as well as i do.

im writing this because i finally broke down. i asked EJ to help me. none of how i feel can be fixed with someone watching the kids or cooking dinner or helping with anything else. only i can fix it. and so today i tried to do that.

i am planning for things to help the house run more smoothly. i prepped dinner early so we wouldnt have a stressful "oh damn, dinner isnt ready" evening after dance. i even got the ingredients for a meal EJ has been wanting me to make for a while - and im excited to try new recipes. our new plan is to eat out a lot less - and this past week, we have been doing great at it. i just dont want to wander away from this concept right away. i am choosing to wake up earlier, from now on, so i get things done before the kids wake up. i hate sending kids off to school, in a rush, because we didn't get up early enough and then didn't have time to just coast through the morning. i want to spend time together without me having to be on them the entire time, coercing them to the next item on their "to-do" list. teeth brushed, eat your food, did you grab a snack... i don't want to get in the car and then finally take a breath. i want to breathe with them.

i relaxed. this is always a work in progress - as i am 1. extremely laid back and conversely 2. easily stressed. all within the same period of time. today i realized everyone could watch movies while i cooked, and then, do naps later. today i remembered that everyone loves to  help cook - so come on in! i unclenched while cooking, about the mess. and just cleaned it up at the end. i fed corbin on the couch and let the other 4 mess up my living room, knowing i could just have them help me clean it later, instead of micro-managing how much they brought out.

i'm not getting mad. sometimes i feel as if i shouldnt give the kids any leeway because then they'll take advantage - and with 5, that can't happen. i used to not think anything like this, yet as our schedules became more demanding and they got older and became ridden with more attitude, i thought it may help. but today, they showed me a valuable lesson: if you give them space, they can breathe - and make better choices. i have had some awesome helpers today, little amounts of whining, and more smiles and all i have done is said "yes" to a few minor things. they arent "getting whatever they want", but i tried not saying no to things i usually did that were based on principle. and we've all been a lot happier.

im also going to forgive myself, when i do feel angry. brush off and start again. no one is perfect.

i was woken up today by a 32lb bald kitty cat, named reese, meowing and kissing my face. thats all i need to think about. today is all that's important.

we arent guaranteed tomorrow. or even an hour from now. so, instead of hurrying to and through schools, events, doctors, i am going to try to slow down and change each moment and make more deliberate decisions based on how everyone feels about it and less "how can i make this easiest for me", because in the end, everyone happy IS what is easiest for us all. i started to become someone i wasnt. so hopefully this will bring me a heck of a lot closer to the few pieces that i miss from the old-normal.

and for today, i am shouting "reese is doing awesome!!" and i won't feel punched in the gut with the alternate possibilities. i will feel confident in doctors and prayer.

miller's birthday wkend and valentine's.

i feel like i havent blogged in so long, but really its just that so much has been going on.

miller turned 2. i love 2. and more so - i love miller at this age.

she is so funny. she learns a new sentence every day. she has caught on to the attitude of her sisters and emulates them perfectly. she is bossy. and loud. and has a horrible temper. she will throw things. she knows what she wants to wear and tells you. she is my "oldest" 2 year old, yet.


ETA: i forgot this adorable vid of her on her bday haha
 

miller twinkle star from amanda skelte on Vimeo.

"i luh lou". i love you, too, miller-miller.

she loves her sisters. but loves reese the most. and now corbin, as well. but reese and miller have a connection above any other.

where do you want to go today, miller? "starbups!!" because of her morning "while mom and reese are at chemo" dates with my dad.

anyway, i think most of these pics do her justice in explaining her personality.

her last pic being 1yo.



we all woke her up on her birthday.

her bed head is so amazing.



everyone else went to school and i got her some dunkin ;)



and she caused trouble on my desk.



reese and miller had a special cupcake date. reese loves helping us cook/bake anything. even if she doesnt get to eat the sugary goodness in the end ;)

miller had a bit of a freak out… because she wanted the cup that was ALREADY in her hand. ya know. like 2 year olds do. lol but licking the (egg free - we subbed applesauce) batter cheered her up.



my wonderful friend, pam, came in town last wkend :) it was so nice to have her here again to hang out, drink wine, gossip, etc. and of course pam is an awesome cook - i had a super small, 99% family party on sunday, for miller, and pam slaved away all day :)

(this pic makes me laugh since my bro is trying to copy sawyer's fake smile lol)



miller opened presents and loved all her new babydoll(s) and extras. she is such a little momma.

(and thats a dance costume that aidan has on haha)




then there's valentine's :) my sweet valentine babies.



and then valentine's morning!!



ok - and in IG (punkfictionv4) drop :)