hospital rambling.

again we came into chemo sick. last month, it was an ear infection. december was filled with the encephalitis/meningitis debacle. this month, i could tell she was getting crankier by the day and then BAM! sick.

they moved her tuesday in-patient chemo to thursday bc there were no beds. we got here and i mentioned, prior, that she said her shoulder hurt - so we did xrays to make sure her port didnt move or anything. all looked fine. her ANC was 13,000, which basically indicates sick. we just assumed virus. i am not even certain she would have made counts without being sick.

by thursday evening, i was super confused. she had faded very quickly.  her shoulder area still hurt and she was just not herself. attending told us to keep her NPO (no food or drink), if she was like this in the middle of the night, so we could do an MRI fri morn.

they decided to do a virus test to rule things out and that was it -- RSV. annoyingly enough, i had taken corbin into the pedi on wednesday for her cough. so we have had to keep an extra watchful eye on her breathing, as well. so far so good - just a lot of coughing up phlegm.

as for reese  - that meant we did not need an MRI, since we found the root of the way she was acting.

this whole weekend has been… stressful. reese doesnt do anything normal so its just ::shrugs:: and guesses and preemptive meds.

her normally cold and purple ish feet were warm and red. so guesses of sepsis/cellulitis floated around. they gave her abx just in case. then that was disbanded as a possibility. her arm still hurt so we had another xray. totally clean. her HR was high from the RSV so they gave her more fluids - which just made her sodiums go higher. which is then only solved with NO fluids (so she will drink. she will *not* drink when she has maintenance fluids). she had a fever so along with abx, she got more steroids.  which has made her an angry bear. she started getting itchy - then a stronger rash formed. i think it was from the abx, honestly, even though they say probably not. whatever, she's getting benadryl. at one point her port wasnt drawing back. she doesnt really eat here and so she also needs to get potassium. something that helps one piece usually seems to harm another. such a balance.

one kid in the hospital has always been a double edged sword. being the parent at the hospital is nice. there's… control. youre not waiting to hear updates, youre not texting reminding the other parent of things you wanted to say to the nurse or dr. but youre also not sleeping. and its stressful to cater to a 3 year old kid on steroids. its even more stressful to be the parents making decisions and having to remind doctors how well you know your own kid. not nurses, not attendings… just the middle ground.

being at home is fun. its fun to take the other kids out. to hang out with the big kids on a smaller ratio ;) you arent having to talk to medical professionals every hour - you just hear what you need to know. but, again, you dont sleep. your whole family isnt together and thats disheartening. i get sort of… lost… at night without everyone. i just sit around watching tv too late and then finally crawl into bed hours later than i should have. then i also worry. EJ tells me things that are happening and i tell him what to do - even though he knows what to do. or already did those things. but its that type of scenario when you feel like you have to say it bc WHAT IF YOU DIDN'T!? annoying, im sure lol

and the stress doesnt end. yesterday evening, we facetimed bc she was so upset. i had EJ "pull hair" to calm her.  then again at 2:30 this morning, i facetimed her to sleep. she always wants whatever parent isnt there, of course.


and then it gets to the point where she feels better, but we have to finish things off. wean off some 'roids, finishing abx, check blood level in case she needs a quick transfusion… but at that time she wants to leave. "port off!!" bc she wants to go home. nothing is fun anymore. she gets bored. with things like RSV, we cant go play anywhere - and i cant even sneak her out of the room. she has no interest in playing with toys. and sometimes wants the TV off bc that means we are staying. its frustrating for her, but she's at that middle age where she understands, but not fully.


yesterday she missed the 80 degrees weather. the other kids played outside from the second i got home until past normal bedtime. reese missed aidan's morning soccer game, which she loves. and today it's icy. its 25 degrees or so and the roads are terrible for driving. i can hear the ice pellets on the window, here.


but soon, now less than 12 weeks as we were reminded by her oncologist on thursday, chemo will be done. i joked "it doesn't have to be" and he smiled and reminded me why you dont want to live on chemo ;) and also kind heartedly stated that he feels "this amount of time on chemo will be the perfect amount of time".

i will be lost when we arent in the hospital. when we dont see doctors extremely regularly. when there isnt something actively killing cells in her brain. when her body has to work it out on its own. when God hears our prayers and her body does those things beautifully and seamlessly.

we should be going home tomorrow. maybe the weekly vinc before we go. maybe some blood. then it will be tuesday. 11 weeks to go. so many plans for the summer. for the future. i can't wait to brush her hair again. we're going to the beach this summer with Lighthouse Family Retreats. from blog links to e-friends to random searches, i have known this family since fall 2012. diagnosed the same day. birthdays days apart. a mother who just "gets" me and has the same very expensive momcology degree - paid for in tears, heartache, experience, and, yes, dollars. and a family who will be with us at the retreat. the kids who we have talked about for almost a year and a half will play in the sand together. the mom who ive texted, late at night, to just hear someone understand what im frustrated or upset about, is going to sit on the beach and drink wine with me.

these are the types of plans that get me through the wonder. these things will get me from after-chemo MRI to the next. so i continue to plan.

reese should wake up from her afternoon benadryl induced nap soon and i need to pump. but hopefully, tomorrow, her nap will be in my bed, instead.

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home, hospital, hair.

i had grand plans of posting a few days ago about last weekend and such. life got in the way so here i am updating with a large percentage of IGs. ha.

first, i wanted to go back and post about something that i just got photos for. december 17th, ashley (with help of all the wonderful people at the school/church) set up a candlelight prayer meet-up for reese. that was the night before the resection - when her sodiums were low and we had to go in early.

brittney davis photography (also an amazing friend of mine) took some photos since i could not be there. just looking at them made me remember how many people just love reesey. i am surrounded by awesome people. and thank you all who went - and those who lit a candle and prayed for reese -- wherever you were.

late last week, i realized i needed to go to the store. and now, with 2 kids that can't walk, i headed to kroger where i can put two kids on the top of the stroller and then 2 kids down below :) reese was so happy sitting my miller and buzzing around.

the creative mind behind Miah Rhodes sent reese these headbands and she looks so cute in them!!

 

on saturday, we basically just got in the car and drove around. its what we do when we need to get out of the house but have no where to go (or can't, for that matter). it was cold and rainy out and we didnt know about reese's counts so we didnt want to take her around a bunch of people. later that day, aidan had dance practice - after, i told her we could go get fabric for her sewing machine that she got for xmas! then ASM and i had a date ;)

 

i am not good with a sewing machine. lol even a kids one ;) so EJ helped with that. swoon.

 
the beginning of the week we just hung out, had chemo clinic, and had some sillies.

 
wednesday night, we had bathtime. miller was being silly.


 EJ got reese undressed and she shivered. she didnt feel warm. she didnt act sick. but he thought "hm." and took her temperature.

101deg.

protocol says we have to call children's. we did. took her temp again 100.8 in the other ear. they told us to go to legacy children's (the one closer to us) and so EJ packed her up. when they got there, her fever was "nothing" - which is 100.4 or lower. but her ANC had dropped from the day before when we were at clinic. so they sent us to dallas - which meant an ambulance ride.

hospital trip story very short -- we were there til last night. they had to wait until her ANC started trending back upward. we were on isolation the whole time bc she had a flu culture - and while originally it came back negative, the "whole thing" takes 72 hrs. so until that was done (we left before it even hit that), they couldnt let us out of the room. that was miserable. i went up early on thursday morning and stayed til last night.


     

to see how much fun we had --- reese with cups. oooorrr her breakin' it down :)

when we left, her ANC was higher than it was daaaaayyys ago. which is awesome. today we got to enjoy a normal saturday. 

 

now, the sentimental, sappy, ::siiiiigh:: part of this post. 

this week reese was sleeping on me and when she got up, there was a lot of strands of hair. she gets it in her mouth all day bc it falls out all day. and its itchy and it tickles. ive been told several times that it can also hurt.... so we wanted to help a bit. this will at least help it from getting in her mouth... til its gone.

i didnt cry while i video-taped it. i cried while rewatching the vid though... sometimes i forget. 

we have an MRI on the 22nd. before we do A2 of chemo. i am scared. what if its bigger? she acts so awesome every day... this week dr. b came in and talked about the MRI and said if it was bigger, then we'd have to do something else.... 

it has to be the same or smaller. i pray every day that it is. 

but for today... we cut reese's hair. something small - but so big. it reminds me of whats in her noggin.

reese's hair cut from amanda skelte on Vimeo.