i thought id take a post to talk about some regularly asked questions on here, in the comments, and on our reesey FB page :)
so here goes - i'll add to it if you guys have anything else you want to know.
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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.
what is DI? why does she have it? what do you do to control it? will it ever go away?
DI is diabetes insipidus. this was not caused BY the tumor. reese has DI from the surgery for the tumor. basically, when you mess around with parts of the brain by the pituitary gland, cells from the PG start to die... and then can cause your endocrine system to go wacky.
what basically happens is that her body, with out her subQ injection of DDAVP, could do 1 of 2 things.
1. pee out. when you keep peeing, your body loses the water and then leaves the sodium and your sodium levels get high.
2. hold the water. then, your body dilutes the sodium and your sodium levels get low.
so her meds do this -- she drinks a good amount of liquid all day. we weigh her diapers to make sure that her ins and outs are close. at about 12 hours, she should start to pee out. so she'll have a really big diaper or 2 pretty good size ones - at this point, as i stated above, her sodiums are going high. THEN we give her the shot and her sodiums come back down. we do this every 12 hours or so. if she pees a TON at about hour, oh, 10 or so -- we can give her the shot then, but if this happened a few times in a row, we'd talk to endo about the dosage. same goes if she hasnt peed out by hour 13 or so.
also, her body tells her when to self regulate (so far. we are hoping this continues post 2nd craniotomy). so she gets very thirsty around hour 10-11 trying to keep her own sodiums low while she pees out.
reese rarely has low sodiums. the other day, when they were 128 (normal is about, oh, 138-142ish), here's how that happened... the night before, she drank a lot. but didnt pee a lot. when i went in for pre-op, i should have KNOWN that they were going to be low bc, in a way, she was self regulating by not drinking her bottle at all. she would just hold it - which is a bit weird for her. she was also a bit more tired than usual.
if she did not have a thirst mechanism and know how to self regulate, she would need an NG tube and we'd just push in the liquid that she needed to balance what she peed. then, as she got older, we'd be able to drink water as a "medicine" - as in "hey, come drink this 8oz glass of water for the hour!"
conceptually, we have this down. it doesnt stress me out as much as it did a few weeks ago. but its going to be a lot harder with the chemo (and was last week with just that one chemo clinic we did) - bc they have to give a lot of fluids. so then you need to watch the outs, as there is so much in. before her low dip, she had had 2 sodium checks while she had been at home and they were 138 and 141 so we were pretty proud of ourselves. ha.
she will have DI for the rest of her life. eventually, she will just take a pill.
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.
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.
zantac (2x/day PRN) - for heartburn related to the HC/steroids. "as needed".
colace {2x/day PRN) - stool softener bc vincristine leads to baaad constipation.
and then of course, the DDAVP.
we have a white board with the meds on it and an ins/outs spot that we keep up with all day.
the braces that you may have seen her with in the hospital are for her wrist drop and foot drop. the ankle one isnt needed anymore, but the hand ones are to keep her wrist from flopping over and/or to keep her fingers from curling up.
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.
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
and iirc, they are paired the way i wrote them, as well. the 3/4 is called EP/PE.
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 (in-patient)
3-4 days later - 4 (in-patient, i think)
then we start all over again. the regimen that i saw yesterday had this going for, like, 72? weeks or so.
she has to get a lot of fluid with these as #1 would ruin her bladder if she doesnt get fluid/meds to combat that. that is why she has to be in-patient. we have to watch her DI, of course. as well as treat things as they come. the vincristine is a push and only takes about 30 seconds to go in - so that is clinic. #3 is similar to #1.
side effects are - hair loss, constipation, vomiting (they give a zofran pump) , possible hearing loss (usually only high frequency, but we'll keep an eye).... in raaaaaare occasions, she could get a secondary cancer later (leukemia) because of the way chemo tears apart your DNA and how its repaired. like i said, its super rare. and, of course, others that i cannot think of right now.
with her blood counts being low - what can you do? can you leave your house? does she wear a mask?
ok. you will see reese at target. you will see her at school pick up. you will see her at PT/OT/ST. you will see her around town living life. bc its OKAY to do these things.
as quoted from the oncologist yesterday 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 4 children living in it. 2 of which go to school. besides reese having more damaging things in her own body to fight than a kroger cart, A and S 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.
what physical limitations does reese have? when did they start?
reese does not walk or stand. she can now sit unassisted, but that was within the past few weeks. her right leg is weak (post 1st craniotomy), but not too bad. she can bear weight on both legs and stand with our help. she moves both legs as well.
she can move both arms. her right arm is weak, but she does move it voluntarily at the shoulder, and sometimes, elbow. her right hand is basically dead, for now. she, before surgery, only used it as an assistant hand to hold bags or something, but now she rarely uses it. OT should help with that. she *can* move it - but her left is so dominate now that she doesnt.
and no, making the left arm unusable so she is forced to use her right is not happening right now. maybe in the future.
we make sure we bring the fun to her, more or less. we had her sit on the ground at home and we all played around her. at the hospital, she is in bed bc she wants to be ;) we ask her all day to come sit with us - and she does when she's in the mood.
will anyone be shaving their heads when reese is bald?
this is up to EJ, but i hope not lol usually that is something to show "hey! don't feel self conscious!!" but its not really something reese, likely, cares about. she's only had this hair for, like, a year-18 months ;) and plus, i think EJ would look ridiculous with a shaved head lol
he does, however, want to get a port tattoo. :)
how are the rest of the girls taking all of this? what do you do with them when youre at the hospital? how do you and EJ manage them/work/life, etc?
miller has no idea whats going on, of course. she is just happy with whoever has her at the time. her favorite thing to do is flirt with people when my dad takes her to starbucks ;)
sawyer, generally, isn't too curious. she knows reese is sick and takes that and moves on. she's not my emotional child, in general, so she trusts that reese will be back when she's well. she looovvesss to be around her when she's home, but she more or less just figures "it'll be okay. she'll be back again soon", i think.
aidan is the most "bothered" and curious. we answer all her questions factually and move on. her port is for meds, that boot is for this, her shots help this... etc. and she's a little nurse who soaks it in and is okay. she misses reese. she cries about missing her. she was sad when reese had to go back for another surgery. but facts help her -- we said they had to get something else out of reese's head and that she'd be home soon - she trusts us and the doctors and just patiently waits for all of her sisters to be back together.
as for the "where are they" questions -- the answer is either my parents house or sometimes, if my parents take A and S to the lake or A and S are in school, M is with my brother/sil :)
EJ and i have to have a schedule - i, obviously, put my photography business on hold, but EJ can't do that. so when he is at the hospital, he is working. when he is home, he is working. 100%. we also want to be able to spend time with the other kids, so swapping makes that easier on us all. its harder on us, i guess, bc we are used to spending so much time with each other. and now we only see each other during swap times. we phone chat a lot though :)
dallas children's is about 40 mins away from us? it feels like 5 mins now. i feel like i just fly down the tollway. for those in dallas, i get a lot of "can you go to legacy children's ever?" and right now, the answer is no - our drs are at dallas and so that's who we will see. and really, the 20 min drive longer is nothing anymore.
does reese know whats going on? can she communicate how she feels? do things HURT her?
meh. here's the thing, i think she understands that she isnt at home and that, now, i think she understands we will go home eventually. she cant really express those types of things, though. she used to say she wanted to go to the car and that always made me sad. she has a very high blood pressure for a while when we went into appointments/clinic after being at home -- but then i just keep repeating the schedule for the day "just here at the dr, then lets have lunch and go home!! lets go home after this!! see your sisters? at home!" and then i have them re-do the BP at the end and she's in a much more normal range. so i know she "gets" it. but i also know she understands me when i tell her that its okay.
she gets loratab and things for pain, if needed. and when accessing her port, i put EMLA cream on her about 1.5 hrs beforehand. fwiw, she cries when i have to hold her arm up and away from it (bc they have to be sterile so she can't touch it) and because she doesnt like to be restrained in any way, but her cry doesnt change when they access it. and then when its done, we're like "ok, we're done kiddo!" and she immediately stops lol so yes, i think the EMLA works.
the worst parts of this is having to "help" with things that i know she'll hate. we left the room when they did brain fluid drains, but i was there when they had to put in a new cath and i just wanted to die :( nothing on this earth is worse than knowing something will be uncomfortable or hurt and still having to make your child do it. they do have meds, though, that have an anesthesia quality to it. so that helps her in the end.
does reese actually have *cancer*, by definition?
honestly, i need to ask this. her tumor was classified as benign. HERE is how it is defined. so by that link, no. i guess she doesn't have cancer. but... she *does* have an uncontrolled growth of abnormal cells. so really... i guess the answer is "i don't know". i say "she has a brain tumor."
i'll ask that when i see the oncologist next.
has her speech been impaired by the surgeries?
no. she talks the same as she did before. she will do speech therapy since she was already a bit of a late talker, but cognitively, she understands multi level commands. as for talking, she says the same phrases, sentences, words, etc that she did months ago. and some more - as she has learned new things along the way.
does reese have any favorites? tv characters? colors? toys?
haha. well. sort of. she is not partial to any colors, no. for characters, 8 weeks ago, this kid would never sit down to watch tv - no way. so she didnt have any fave tv shows or anything - but now, id say she really likes mickey/minnie and elmo. those are what we usually put on if we're just sitting around.
as for toys, she is more along the lines of a 2 year old v 2.5/turning 3. she likes things that make her snicker - like things that pop out at you, things you have to turn and hit and that make music, etc. she always loved the kitchen at our house and LOVES to play with blocks.
how do you stay "so positive"? are you mad at God?
i am not mad at God, no.
my choices are these -- i can be pissed. i can sulk. i can hate everyone who has perfectly healthy children. i can cry every day. i can just stare into space at the hospital.
or. i can make the best of it, in a way. it is what it is. there's nothing that i can do that can change whats going on. so, while we definitely have our own breakdowns, we most certainly take time to cry... we also thank God for helping reese thus far. for showing us the signs of her tumor and for, also, showing us the sign that the chemo wasn't working.
i see people who don't pray - pray. i see thousands of people coming together to lift up a 2 year old that they don't know. im not mad at God. He has a plan for reesey. and i just have to trust that.
we joke with the nurses, we chit chat with doctors. we look like dopes trying to make reese laugh in the hospital rooms. we are there and nothing changes that - so we'll do what we have to do to make every day a good day, if we can.
how do you feel about sharing your story to internet strangers?
well, i wouldnt be writing this if i didnt want to share reese's story. when i originally found out about her tumor, my friends knew how i was/would be, in regards to updating - they started the reese page, her donation link, everything within a matter of hours. i have "been around the web" for years. i have had this blog since 2008. i have been e-friends with some of the same people for yeaaarrsssss. people that are closer to me than some people i know IRL.
but mainly, the amount of support is one of the things that helps me relax when i sleep at night. the prayers, the kind comments, all of it brings so much peace.
i have cried over blogs of people i don't know. i have refreshed facebook/blogs/twitter holding my breath for good news from a family across the country. i never thought it would be me on the other end. but i do know how easy it is to love someone from far away.
i feel nothing except for blessed for everyone that says a whisper of a prayer to a shout out to God, for reese. for every letter, postcard, xmas card, gift, meal, dollar, and e-hug that we have been given.
i dont feel pressure to update ever. its like telling my friends whats going on - you all understand that if i need time - i need time. i just hope that people reading know how grateful i really am. writing these things out, talking to friends IRL about the facts, giving updates... it helps a ton. just to... get it out.
that - and taking photos along the journey, of course. i dont want to forget one step of this. as horrible as these months have been - later in life, i will want all of these pictures. i already look back at previous posts to see how far she's come - i cant wait to do the same years from now.
