i will miss this.

i was walking over to get my shitty maxwell house coffee, when it hit me.

i will miss this.

it's hard to say if she'll have more chemo down the road, but for the sake of hope, lets say she's totally done.

i will miss these hospital overnights.

i will miss packing up the car. overnight clothes for miller and now corbin. dance clothes for aidan who is to be picked up by her teacher. reese's backpack filled with extra clothes, things she may want to (but likely not) play with. then my backpack with another shirt and pants - i have limited myself over the months, knowing what will and won't be used - and my toiletries. i started with bringing make up, now sometimes i bring moisturizer. ha. sometimes i bring my camera. i always bring my laptop and planner. recently, i have had to bring my pump. then we stuff it all into reese's stroller. i fight her, and lose, about  wearing a mask, finally make a deal about covering her face with laylee, and go in to the hospital.

i will miss chatting with nurses. nurses who i've grown to know and love. who know me and my family. who care about my daughter. and who show their care in every move they make. who are so smart. who are friendly. who listen to me talk… and talk. who are my liaisons for my concerns and therapists for my wandering thoughts.

i will miss reese scanning and scouring the prize closet after port access for bubbles. that she never really uses, only holds and hoards with her tape measures.

i will miss spending this time with reese, one on one. no other siblings. just me, reese, and a twin bed. during the months where my corbin-filled belly took over part of reese's spot, she just would adjust, lay on top, feel her kick.

i will miss the uncomfortable (but a lot better than ICU!) couch/bed thing here on the oncology floor, where i would spend most of the early parts of the night on my computer while reese slept. the thin blankets. the scratchy sheets. then being woken up at all hours bc i keep hearing the pole beeping. or because reese wants food at 3am. or because, amidst a dream, i heard the faint sound of a pre-puke and so i raced over to catch it. or the tech taking and re-taking reese's blood pressure because its "so low". i know it's low. poke her, she'll wake up and spike it for you.

i will miss tossing overnight diapers with tigger, to the side, only to use pooh bear ("tiny bear") ones. until reese changes her mind and then only wants to use the tigger ones. i'll miss her stuffing coins into gloves and taking out tissues. i will miss nurses thinking that her diaper-wrapped tape measures are the biggest pee they've ever held - and reese audibly correcting them to put it down.

i will miss adjusting fluids for reese's DI/non-DI. i will miss being a know it all. the mom who had it figured out for a while. "well, see what mom says…"

i will miss facetiming family at home. mainly bc EJ knows how to make it look like he's floating either a. in the ocean or b. in space.

i will miss walking to get food that reese will hate and never eat, even though she asked for it. "mommy… i want food." i will miss walking 230948230 times a night to get her ice. and creeping in and out of the room silently while i run down to get my own snack. usually a cookie. they are delicious.

i will miss trying to calm her from screaming for no reason, in the middle of the night. or whenever she wants EJ. which is usually the whole time that i am here - because she only wants mommy when she's here with EJ.

i will miss doing laundry down the hall. and sneaking laylees out bc they smell like puke.

i will miss complaining with doctors and nurses about the same kinds of things. there's some sort of camaraderie there, as they say things in agreement because they are comfortable and then i see their eyes wonder if they should have kept that confirming opinion to themselves. p.s. the answer is no.

i will miss watching full house and friends all night. until i can't keep my eyes open anymore. if king of queens comes on, its time to go to bed. they started friends, on nick at night, from the beginning. i feel like i watched it all the way through, at least twice.

i will miss reese deciding who she likes and doesn't like for the day. depending on her mood, if she'll let them put the cuff on. if she wants them to look at her port. trying to make her laugh with things that put her into giggle fits the week before, but now only makes her scowl. on happy days, i am always elated that they get to see the reese that i see every day - not a cranky kitty.

i will miss telling the nurses to please run her meds in as soon as they get here, at night, so i can put reese to bed. and then wondering whether the meds will be given easily or if she'll want to put up a fight. will she gag on the bactrim? did they order synthroid for the morning? one isn't here and now she's asleep?

i will miss the smell. the smiles. the exhaustion.
...the quiet nights. the tears. the sick kid cuddles.
i will miss the security and confidence in the people around me.

i will miss this.

now we go make more memories in new places. with newer normals... but the same us.

big steps.

literally.

i dont know we got the small metal walker out, but we did. i put some glitter pink washi on the bar and called it her "sparkle walker".

the next day, i brought it, on a whim, to target with us. its easily tossed into the front seat. she wanted it to come. that, alone, was huge. but then she said she wanted to walk into target.

and she did.

i had heard "i hate my pink walker" for so long. a very expensive piece of metal, taking up space in the dining room..

now, let me explain how this went. i got corbin into the basket of a cart and pushed that along as we ever slowly walked across the uneven ground. she yelled at cars that were coming. yet everyone patiently waited for her to pass, waving and giving a sweet smile as they drove by.

we got to the other side, she teetered back a bit, and i rescued her and tossed everything into the cart. i was beaming. just so proud of her.

i kept at it. she uses it around the house, sometimes. she walked into PT with it. its just wonderful. tonight she walked about 4 steps from standing in the middle of her room, to me. and she has also started using the pink walker again because of her new found confidence.

things, in general, are wonderful. there is reese in a good mood and then there's reese how she's been recently - which is awesome. not being sick, helps ;) but we truly spend all day laughing and making jokes and cuddling. we are kitty cats, we write hearts on our hands. we have fun. she is starting to act more "hi, im 4 years old." and less OMG OUTRAGE three'nager.

we have her last MRI while on chemo, tomorrow. and yes, then we have a meeting after that - so no waiting. i am not nervous. at least, right now. i dont know why, but i feel very at peace, mainly feeling as if she is going to rock it. tomorrow, i will feel less certain. but i'll be up at 5am, drink my coffee, feed corbin, pack them both up, and head down as confident as i can be. EJ is going to take A and S to school, then meet us. M is already at my parents' house since they didnt really want a 6am drop off ;)

at labs last week, i tried to get some pics of reese doing what she does. with the people she loves. miller came with us and was, surprisingly, great. reese walked the hall, gave cuddles and thumbs up, and gave some blood. all in a days work, i suppose. how so strange it will be for these to become less frequent. being ripped from a routine is miserable. i felt that way about "drop offs, gym, pick ups, dance" that i had before reese was dx. how strange that i feel even worse about going back to that this summer.



i feel the need to rush and make memories. different kinds of memories than i am used to. i just want to make sure i document how things go right now, at the hospital. people she sees, things she regularly does. i don't know, but its overwhelming. i want photos with doctors and nurses. we will be seeing them, all of the time, still. but eventually in a different type of setting, i suppose... or hope... or whatever. i am trying to plan next week's "end of chemo" in-patient. and that is tipping my scale.

reese had a hearing test today. meh. she has dropped off on her high frequency hearing. which is to be expected. and we're almost done, so...

i think she expected me to make a sad face or something, but i just said "oh ok. thank you!" and went on my way. all things considered, high frequency loss is pretty low on my freakout totem pole. she could be going deaf and we'd say "i guess we should all learn sign language" - because in the end, it just matters that she is here with us. and happy. so this was okay.


aidan woke up from a sleepover on saturday and her eye hurt. long story short, EJ was at the legacy children's ER that night - pink eye and a corneal abrasion. :( sweet girl. she was simply excited about "a bracelet like reese!" i kept her home today, from school, but at least she's not contagious anymore (we got the 8 hr meds). let me say, eye drops for 5 days, though, is no fun for a 7 year old.... or the eye drop giver. ::twitch::


we spent yesterday evening at the splash pad. after hearing that this week was going to be so cold, we had to get out and get some sun. they had so much fun just running around and eating dinner picnic style.


summer is coming. freedom is coming. i am hesitant and nervous... and excited. the countdown to reese's last chemo is about a week. i have to get my thoughts together. and pray that this it.

another new normal. after already getting used to this one.

potentially long week.

i have a lot of photos coming when i get back to my work computer, but for now im on the laptop and i can just blog this way.  i have a lot of amazing pics from bluebonnets and disney on ice (omg. so fun.) but first, i'll do a total update on reese.

1. we havent had to give DDAVP (the shot) in weeks. i really dont even know how long its been, honestly. a long time.

2. i finally looked at the last MRI and there's a lot of fluid. its so strange bc she is acting better than ever. but as they said, kids' brains are amazing so who knows. MRI on monday so prayers for that please. i'd like a miracle, personally, to where it was just reabsorbed and BAM thats it. :)

3. my tuesday sucked. bottom line. we went in for labs before her ABR (sedating hearing) test. so i drove downtown at about 7:45am (ugh traffic) and got there in an hour. we went to chemo clinic where they were going to do labs and order chemo so after the ABR, we could just come right back up and get vincristine and go home.

instead, we couldnt get any drawback on her port. nada. its usually hard to get blood as her port is super positional. we have to basically fold her over and almost tip her like a teapot, but this time... nothing.

so they put a chemical/med thing (TPA) in her port line to see if it was a clot or blockage and it would "break it up" a bit, if that was the case. we were admitted downstairs, checked in to pre-op for the test, reese took a nap on me. then she got some versed (snicker. go home reese, youre drunk). and then she went to her test. they gave her an IV after they put her to sleep with gas.

so we went to clinic afterward with the IV. i felt horrible bc i forgot to tell them that she has a weak right hand. so they naturally put the IV in her left hand :/ so it was hard to navigate her bottle. when we got up to clinic, they took labs from the IV and then we had to figure out what to do with the port.

we went down to get a dye test. they brought the xray thing over her, and before we put the dye in, they saw that her port was not in the vessel anymore. uggghhhh. that means new port.

we go back to clinic. we have to make a decision. they CAN give chemo through an IV, but there are risks. one thing is that they needed a new IV. the second thing was the it has potential to burn the skin from the inside out. but the risks are a lot lower with a new IV. after talking to the oncologist, with the amount of vincristine reese gets, this week was okay to just skip. we get more vinc next week with "big chemo" and so often that it was not a huge deal.

i called EJ and we went ahead and said try an IV. i wanted the vinc. it made me so nervous to just say "meh, skip chemo."

so i held her belly to belly over me, sort of like a baby. and had her blankies on me. they numbed her hand, brought in the IV team and went ahead.

it was horrible.

they had gotten it in and could get blood, if needed, but it was not "chemo appropriate" at all.  and with the risk of the burn, we had to try a second time. same thing the second time. by this point, reese had screamed so much (mainly from being held down, but also the whole situation was overwhelming) that she was dry heaving and i thought she'd black out. we all looked at each other, ended it, took out the other IV, and said no vinc this week. no more. it was now 5pm and it was time to go home. time for her to relax for the day, not be prodded, tortured, done. i felt good about it.

she will have to get a new port before chemo, so hopefully monday before her MRI. then we'll stay there, likely, do chemo, and then figure out what to do, if anything, about the fluid.

next week has potential to be very long. prayers needed, my friends. for strength, for reesey, for healing. you guys know how to pray the best kind of way. ;)