chemo and competition.

after the good MRI news of last week, we went back into chemo on thursday. they are such long days. you go in, you wait.... you see a nurse, then wait... see the oncologist, wait some more.... then you wait for a room.

it was taking so long that we finally just went to hang out and watch a movie in the infusion room instead of sitting in a clinic room. we watched cars, she napped. i played on facebook while she slept. finally, we went to the oncology floor.

after that was more hanging out. all day.... all night... chemo, mesna (to help with the bladder), lots of fluids...

EJ came on friday and brought donut holes. which she hasnt had in weeks bc we cut out that excessive sugar, but hell, she deserves it. she was elated.

she puked. several times. in fact, she is still puking when she hasnt taken zofran. tonight she puked in the car. last night, we heard that horrible wretching from the couch and took off like lightning towards the bedroom, tossing laylees around so they wouldnt get vomited on. maybe its the viruses going around... maybe its the chemo. but it sucks.

her ddavp is so strange right now --- we're at 1 unit. [if you remember, we started at 5 units. then after the first chemo went down to 2.5. a few days before this chemo we were down to 2 units]. and the 1 unit is lasting too long. bc of the puking, i assume, she only "pees out" (which isnt even as much as it was, but at least she hits negative for output) 1x a day. not every 12 hours.

we went in sunday morning to children's legacy for a sodium check and, we assumed, fluids. but her sodiums were 144. which is perfectly fine. so they just came home...

she is acting normal, she is happy.

tonight, someone actually said to me "how old is she?" "oh, 2.5" "well she is a great talker!!"

what?! haha i retorted back "well, since december, she has been!" and explained how the 2nd resection seemed to have lifted something off that part of her brain. but never did i think someone would be impressed with her tiny little voice that only i thought made sense.

yesterday we had PT. that was fun. she showed her how she scoots on her booty ;) tomorrow we have our OT eval. then thursday, back in for vincristine at 10am. then, i believe, we do not have chemo for a few weeks. we'll have to postpone miller's bday party by a week bc the wkend we would have it, reese's counts would be too low, but the next weekend, before another in-patient, they'll be perfect.

this wkend was also aidan's FIRST EVER dance competition. omg. it was so much fun. i cant even EXPLAIN to you how exciting it was for her (and for me. oh yes and for me haha). we spent the night at a hotel on friday night, hung out, went to dinner, then went to bed EARLY (best sleep i have gotten since october...) and then up at 6:30am to get ready for a long day.

she had convention classes starting at 8am. hip hop, tap, contemp, and jazz. that was til 2pm and then competition started at 3:30pm.

she stole my heart. just.... swoon. she did so good. i mean, did she make mistakes? of course. did she keep on going? yes. did she smile the whole time? haha no, she had on a thinking face (we'll work on that lol). did she have some 'tude when she needed it? oh yes. were the other "mini" teams all 8 year olds? haha yes. but were the people around me just swooning over the 5-6 yo cuteness? heck yes lol

and she learned so much -- she came home and had a million things that she couldnt wait to do next time. couldnt wait to try out --- things that she told me "thats what the winners did".  and i am more than excited for their next competition on march. i cant wait to see what these kids can do from here on out. their dance is hard. its fast. its something that challenges them - and im lucky to have a studio that does that for my baby.



we werent allowed cameras or video in any of the classes or the competition so IG is all i have :) but its better than nothing. what a weekend for my sweet girl.

here are some extra IGs from the past few days!!

a tiny bit.

this was a long weekend.

tuesday was our MRI. the MRI to tell us whether or not the chemo was working.

i get there and do labs at 10, get done with those quickly and then walk around with a very annoyed reese for 2 hours. normally when we go to the chemo clinic, we go and then we leave. this time we didn't. she was ticked. ;) so i had to keep pushing the stroller bc sitting meant her hollering for the car. finally she fell asleep.

our MRI was schedule at 1:20pm and we finally went in at 3pm. she had, again, fallen asleep on me while waiting.

it was a long MRI. at 5pm, they came out to tell me that her port "wasn't working" so they deaccessed and then reaccessed. and then they put an IV in her hand. so that took time -- but still too long, in my opinion.

we went home and waited. they said they'd call last night. but then again, that was when the MRI should have been over by 3pm. not started then. so i went to bed thinking "if it was horrible, they'd call, right?"

and i was right....

this morning i get a call from dr. b and he first said "well, id say its good news" :) he said, in multiple ways (ha), that "the swelling has obviously gone down from the previous MRI bc that was right after the 2nd resection. but still it looks as if the actual tumor mass was a tiny bit smaller".

which was MORE than i could have ever hoped for. all i wanted after the worst news of my life, that the tumor had grown and the previous chemo wasnt working... was to hear that it wasnt growing anymore. it being the same size would have made my day, but to say it was smaller?

unreal.

i was on cloud 9 the rest of the day.

its over 70deg here right now so my 2 best photographer friends and i went out to the park to snap some pics. i wanted to get pics of awesome reesey on this awesome day.



with her best friend... miller (or "niller" to reese)



we got some others of sawyer with her friend...



and then miller - and one with D lol showing personalities ;)


it was just a great day.

we were supposed to go to chemo today, but its just, bottom line, too full -- so we'll go tomorrow. we have a lot more chemo to go through. 17 more months, i believe? so i can't wait to get rid of this thing once and for all. keep the prayers coming :) God hears us.

here's a short IG (punkfictionv4) recap of the past week.