these are not going home pics.

gah.

yesterday morning, i dropped aidan off at school. i dropped sawyer off at school. i took miller to my parents' house and left the other car seats so my parents could pick A and S up from school.

the plan was for them to be waiting at the house when reese came home.

i went to walmart to get necessities - white board calendar, another big white board for med information, a new trash can for the garage for her chemo diapers. i got reese some minnie PJs since she has been forced to watch so much disney channel in bed.

EJ got the sign off from neuro, endocrinology, and oncology. they filled all of the prescriptions and had them brought up to the room.

then he called and told me that she had puked. i knew what that meant. it was a tell-tale sign that she had swelling in her head. but we just kept smiling and nodding and saying "oh probably too much chocolate milk." but we knew.

her heart rate dropped into the 50-60's. she had slept all night with EJ on the couch - which was awesome, but another sign that she didnt feel well. its exactly what she did at the end of october - a lot of sleeping. and puking. and... just laying there.

i called my mom and told her that we needed to get reese a "welcome home" sign. so we met at party city. she wanted to get balloons... but i knew better.

i went from there to the hospital and just... felt so sad. she was not coming home yesterday. she was barely responsive to most people, but EJ and i were able to get a few smiles and giggles out of her.


AND she high-5'd EJ :) good hand and "bad hand!"


neuro came in and said that from feeling the back of her head, they think the shunt wasnt working properly and that fluid was back there. and that they'd do a CT soon.  the funny part is -- i already knew. i mentioned 2 days ago that i thought the back of her held felt the tiniest bit squishy. mother's intuition, i guess. but we all just sort of brushed it off as "well, a lot has been happening back there". but now, of course, i know. i dont like to second guess myself, but now i am 100% certain to never let that intuition be pushed away - even if i have to request my own scans ;)

CT came back with the confirmation and that we'd do a shunt repair/revision. they didnt know what theyd find wrong, exactly, but they'd try to fix it.

after another brain fluid draw and some drama over the fact that i gave her pediasure before i knew we were doing surgery THAT DAY (anesthesia worries), she went in and they fixed it. seems as if the catheter from the valve to the top was clogged and not working - so they took that out and put a new one in. the dr came out confident and we went to see her in PACU.

today is a new day. she is happy and back to smiley reese. she slept off some of yesterday a bit, but ate well - and her DI has been under control the whole time. 3rd session of chemo tomorrow. maybe going home on thursday?

and one smirk from steroid'd up reesey for your night ;)

modern medicine.

modern medicine is amazing. i sit and watch the nurses and doctors, listen to what they say during rounds, we chime in with what we think... but in the end, the medicine is amazing

endocrinology is unreal, first of all. the only way i can explain it, without saying to wiki, is that it helps every part of your body that you take for granted. the awesome thing is that they can synthesize almost anything, it seems. reese takes meds to signal her thyroid. she will have meds to help her adrenal glands, she takes meds to level off her sodiums... all of it. things that your body does naturally - some people just can't do anymore. [i'd like to take a min to say that these things don't seem to be because of the tumor. they are because of the surgery on the tumor -- too close to her pituitary].

chemotherapy is fascinating as well. i have, in the past, never really taken the time to look up anything *specific* about it. i knew what it was. or rather, what it was supposed to do. but i didnt, however, know that there were diff types of meds and how, exactly, it worked. reese's chemo is vincristine and carboplatin (a few people have asked). she got her first dose of both tonight. last i talked to EJ, she was laying with him on the couch/bed all cuddled up and seemed tired, but okay.

her shunt was put in a few days ago. hers is subdermal so its between the skull and brain. she will have that forever. since her skull is not totally formed back together after surgery, the fluid still comes above, a bit, and then the valve on the shunt takes it away. in 6-8weeks, it wont come up at all. its amazing, actually, to see the transformation. this past wkend, the amount of fluid up there was astronomical, but now... back to her big ol' round head.

now we get to other things -- like steroids. holy geez. even though she'll be hydrocortisone dependent - that is physiological and will only be enough to match what her body will make. but because of the surgeries, she has been on a pretty hefty dose of a different steroid.  paired with her "third spacing" which you can read about HERE, she is... um... bigger.

she came to the hospital at 22lbs. which was... small. she felt like a baby. i could pick her up and toss her around like i would a 1 year old. she was 24lbs (?) at her 2 year appt and also at her ER visit about 6 weeks ago.

but today she weighed in at about 32lbs. ::faint::  which, if you touch her, is all fluid. i tell people to think about the scenes in wall-e where the humans, who have since gained weight because of not being mobile, have to walk --- thats sort of how PT goes (which you'll see). but soon all of this fluid and steroid induced gain will go away.

like i said on facebook, this is part of her journey - so i will write about it. we make jokes and call her "sumo-reesey", but thats how we cope with the change, more or less. there is nothing we can do to change the situation we are in - so we just keep moving on.

she still looks like reese. but i just wanted to "warn" you before looking at the pics. ;)

the hilarity of yesterday included me grabbing some more fruit loops for her to snack on in her cup (hey! at least she's eating!), but she demanded the HUGE box - and why not have that for thanksgiving, right! ha!

PT is always a bust ;) but soon she'll grow to like it. especially since she'll be able to play in the playrooms soon (once she's done with her 10 days of c.diff meds).

today we moved down to oncology. what a move. fascinatingly enough, EVERYTHING in the room had to be thrown away or come with us. its also a super nice floor - with playrooms and desks and family areas and... a view :)



and then she started chemo. they said several times how anti-climactic it would be - and EJ said it was just that. i stayed all day because i thought that we would start, but they said they werent going to until at least 6pm - so i had to pick the girls up. last i talked to EJ, they were cuddling :)



thank you for your continued prayers. i will keep you updated, tomorrow, on how the chemo went over night -- hopefully she sleeps easy and isnt too sick. they pumped zofran in her before the chemo - so lets hope that works.

we have a long road to go. i am nervous, excited.... i cant even type out the emotions that i feel at all times. but for right now -- i am ready. i am ready to kill this tumor. i am ready to bring my baby home. i am ready to hold her without thinking that i'll pull a wire or hurt her some how.

we are ready for this to be our new normal.

roller coaster.

i hate roller coasters. like, hate. when i was a kid, my mom would have to stop rides at the town fair bc she could see me slowly sinking into the seat as my face turned green. i dont like that feeling in my stomach of "holy shiz what is going to happen next?!"

ironically, that is my life.

on the 16th, EJ stayed the night. her HR was high and we persisted about her swelling head. they had drained some to test and did other tests assuming it was an infection. they did find out that she had c.diff. ugh.

luckily, that is combated with abx and so on those she went. they also put her back into the ICU on the 17th. which, by the way, was good. not that the neuro floor didnt do a fabulous job (ish. dont get me started...) but we are still in the "no, i mean i need help immediately!" phase. so ICU is where its at.

we did, however, get shafted to a shitty room without a view of the city... ;)

i have no idea what happened saturday. i know that we spent most of the time dealing with the c.diff. where everyone had to wear gowns when they came into the room. which was weird. and we had to wash our hands a ton.

::eta:: I REMEMBER what happened saturday!! a maid came!! thanks to my uncle bob :) it was awesome.

she also got a feeding tube over this ordeal - which was helpful. she was looking suuuuper puffy. what ended up happening was [now i may get all of this wrong, but im trying here...] that when your body doesnt get enough protein and only has liquid, it basically takes it into the tissue. so she looked like a huge cream puff. just swollen all over. so the feeding tube just pumped pediasure down her. she had gotten up to about 28lbs (unheard of for her. 24lbs has been her max ever) and is now coming down.

on sunday, i took the girls to lunch at OTB. i needed something fun. EJ always has fun things for them when he is home and yet i am not lol so to lunch we went. and it was delightful.

i dropped them off at my parents? i think? i dont remember taking them to the hospital, but either way - i went up there. and reese's head was still large and in charge.

i stayed sunday night and it was "eventful" as she had been very.very.sleepy. and just wasnt happy :( it was miserable to see.


finally, we got a neuro to come in and drain her head. 85 or so ccs later, she felt a bit better. earlier that day, we asked some [very awesome] friends to grab her some headbands per neuro's request... so that when they did drain, reese would have a "barrier" of some sort. not too tight, but enough... maybe.



i wanted my baby back :( this was not like her.

on monday, EJ brought the girls up to see her and swap so I would take them home for the night. they were, again, happy to see her. EJ explains everything that they ask - so the feeding tube, the machines that pumped meds, all of that -- and it helps. they have a lot of q's, but rarely do they act scared about the whole situation.

i left and reese was due to have her port put in yesterday. i was happy - one step closer to doing things that would let reese come home soon. the IVs and such were getting to be a huge pain in the ass, as well. they wouldnt draw back and she kept having to have finger pricks. :( which, by the way, are miserable.

EJ brushed her hair out, like the good man he is.



after the surgery, her head was huge. just huge. they had to drain again and this time got 105? ccs out. thats 3.5oz, btw. they did a CT scan and said that there was a lot of fluid (obviously) that was just backed up and coming out the top of her head. i will spare you those photos - it was just... terrible.

the CT scan also show what they thought was tumor growth.

the pit of my stomach felt the same way that it did the day i found out she HAD the tumor. but they said that there was so much swelling and stuff, in general, that they'd only know for sure with an MRI this morning. so instead of getting a shunt this morning, they drained last night and we waited.

EJ decided to gear up with reese and cuddle last night after the tap.



all night i prayed. i cried. i prayed how unfair it would be to come all of this way only to be told that it was growing. i was sick to my stomach. i prayed for peace and went to sleep and went up to the hospital this morning to see the best face i have ever seen.

reese was so... HER!!!



she heard me and hollered out "mommmyyyy!!!" and, like i do, i called back "reeesseeyyyyy!!" and she was full of smiles.

and sass.



and off to the MRI she went. during this time, they moved us to a new room with... uh... natural light! thank heavens bc a window facing a damn wall was depressing.



we waited in our new room for her to come back from the MRI. and when she woke up completely, she was our normal, happy, funny girl. we played games, she hilariously mocked my efforts in making her laugh, she asked for drinks and food and i just.... got even more excited for her to come home soon!!

(you can see the port entrance down there by her belly --- that is open. it will be, normally, hidden under her skin)

the neuro came in and said that tomorrow morning she will get her shunt. a subdermal shunt that will go between her skull and brain and then down behind her neck and allllll the way down to her belly (all under the skin) where, then, the body will reabsorb the fluid.

honestly, i am very happy about the shunt. the pressure caused by the hydro is what takes reese away from me. what makes her not the kid that i know. with every drain, she feels better. and for that permanently to be there? sounds perfect to me.

i had to leave to go grab the girls by about 3pm. early in the evening, the oncologist came by to talk to EJ. he said that maybe there was growth, but things are going to stay on the plan. tumors are like sponges so when pressure is released, it may look bigger, but not actually have grown (and if so, not by much). so i was relieved. EJ signed consent forms to start chemo this friday. the dr mentioned to EJ that they had talked about the option of resection, but for now we will not - this part of the tumor is in a dangerous area of her brain and surgery could paralyze her right side (if not more). we will let the chemo do its thing for a bit. see how it works. with that and the prayer warriors that we have on our side, i feel confident this will do the trick.

i have felt the ups and downs like a carnival ride for the past few days. i have hit rock bottom and cried my eyes out thinking the worst scenarios. i have been absolutely filled with joy to hear her call my name and get legitimately psyched to see my face.

but now, im ready to get off of the ride. i know its not time, but i can see the end is near. shunt and chemo. thats all we have left before we can go home. her DI has settled on a nice DDAVP dosage and hopefully everything else will fall in line. our lives will be full of ups and downs for years. but this wkend took a toll on me. not knowing what is wrong with your child is the worst feeling in the world. but also, knowing something is wrong and not being able to pinpoint the source to just make her feel better is even worse. we have some amazing doctors on our side -- every prayer that i have heard people say about guiding those who are taking care of reese have been heard.

this is a week of thanks. give thanks for your babies. give thanks for their health. give thanks for the doctors who help them if you are in similar situations to mine. give thanks for every tiny piece of support that you have throughout life - your friends, your family, and strangers who you have inadvertently made an impression on, as they have made an impression on you. give thanks that God hears our prayers every day.