Thursday, February 20, 2014

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:

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.


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

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

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