full circle.

 november 2nd, 2012, we told reese we loved her. we gave her kisses. the nurse warned us that her pre-meds would wear off soon, so to say we'll see her later and go quickly. we turned around, walked down the hall towards the elevators, and collapsed into each other's arms. we collected ourselves as best as we could and headed to the OR waiting room. first up was waiting for the general surgeon to come tell us how him putting an external central line went. they took us to a room and his sweet face, who we'd signed paperwork with before, explaining the risks of that tiny part of her hours long brain surgery, told us that all went well.

today, that same surgeon, who i havent seen at any point in between, took her port out. we sat in a similar small room as he said all went perfectly,  to see a doctor in a month to make sure it healed properly, he shook my hand at the end of a journey - instead of shaking my hand to welcome me to a nightmare.

when we were figuring out a date for port removal - the first available looked like halloween. i gave excuses about that sort of being a damper on the whole fun evening. which is true. but in reality, it was just too much for me. i asked him to look at other surgeons' schedules and he called me back with today's date.

im sitting in bed right now with a new reese. one that doesn't have to go to the ER for a 100 fever. who i give tylenol to, like the other kids. she demanded dance tonight. there was not one question on if she would just sit w me while miller took their class. and when watching her tonight, it was like she had no surgery today at all. she pulled down the top of her leotard for older girls that she looks up to and said "see? its out."

i don't forget that i do not know what the future holds. i dont pretend to think that we still dont have battles ahead of us. i am hopeful for reese's future. i look at her and am amazed. we talk about kindergarten and what services we'll be looking for, what we will want her IEP to say, what classes we want to be inclusive, if she'll get any spec ed or not. i can't picture her with longer hair, but every millimeter it grows is one more chunk of time that spaces me out from the bald beauty that i once knew.

it seems so far behind us...

...but its not. its right at our back door. i just pray it never knocks. 

IG: punkfictionv4

reese's teeth.

wahhhhhh.

i was nervous today going to see her after surgery. partly bc i thought she'd look so different.

a few weeks ago, reese's cheek was puffy. there was a spot on her cheek and we all came to the conclusion that it was a bug bite. it only bothered her every once in a while - and only for a few seconds - and so that was that.

only it wasn't.

long story short, it was an abscessed tooth. her top right 1 year molar. we figured it out bc i looked in and it had [pardon the ew] kinda pus'd out the side.

anyway, we headed to the dentist. first EJ took her to the children's ER bc her counts were low that week. they assessed, but there was nothing we could do with counts that were as low as hers then - so we put her on amox and waited. last wednesday, i went to the dentist downtown and we got x-rays. bottom line, a lot was wrong.

first of all, she needed that molar out. secondly, sigh, ok - so basically a lot of things were against her. we noticed when we got home, officially, in january that her teeth really looked dirty. we brushed at minimum of 2x a day, sometimes 3, on the regular - so morn, after nap, before bed, usually. but the damage had already started.

being in the hospital so much of nov/dec and being given pediasure to get cals is just sugar... drinking out of a bottle is no good (except having a stand off with a kid with DI only does one thing - raise sodiums. so while i tried to swap to severallllllll types of cups, letting her pick out a dozen of them. nothing worked). and then - the worst - chemo.

people who do chemo have little saliva. so while you and i (and your kids) can eat and drink certain things, your mouth rinses itself out. reese's does not, really. so it just compounded.

as for good things we did - she doesnt get sugar like she did before. when her tumor grew, that was that. dozens of people mentioned to us bad cells + sugar = more bad cells so we figured "no time is better than now to quit that crap!!" since december, she doesnt get gross cereal, her drinks are 99% water and only milk to barely change the color so she'll drink it, etc. no donuts, no sugary things really at all. she'll very randomly have a lick of someone's ice cream or a bite of a cupcake for a birthday, but in all honesty, she doesnt even WANT it anymore. people laughed at one of the girl's end of year parties - reese held a cupcake for an hour. i knew she wouldnt even try it. then we threw it away.

all that aside - the damage was done. and we tried to fix it by brushing the heck out of her teeth, but her enamel was already gone.

we had good numbers last week, but when we were getting ready to go to chemo this week, the onc called and said "oh wait. they are TOO high." meaning - the jump between 2 weeks was so high that it meant the white cells were in overdrive trying to kill an infection. so our original date of aug 5th for teeth fixing was moved. and chemo got bumped.

so. today. surgery at 8am. she got that molar removed, her 4 front top teeth removed, 4 crowns on molars, and 2 k9 natural crowns, and sealant on the rest of her teeth. we wanted anything out that could possibly have potential to abscess (infection is a no-go for a chemo kid) or hurt her permanent teeth.

she has to smile REALLY BIG for you to see it and she kinda looks like a vampire LOL she'll get pedi partials (fake teeth/perm retainer) in a bit. maybe the next time her counts go up if we can get a move on it that fast.

maybe its vain as hell, but i dont particularly want her to not have front teeth for several years.

this whole entire thing just killed me. my kids have good teeth - aidan and sawyer = perfect. EJ and i have 1 cavity in our lives between us (p.s. its not me. zero on this girl). so for this to happen to reese makes me feel like such a failure. i know its not totally my fault. i know "hey, she needed pediasure. hey, you had bigger fish to fry [aka a tumor]. hey, chemo also sucks!" but still...

i will try to get good pics when i can of her cute grandpa face ;) but for now, we'll just keep feeding her soft things and getting her used to it all. she actually ate a good amount today, so im happy about that.

thank you for your prayers. after my last post, i really have felt so much more at ease. God has given me several "I got this. Relax." signs. and i just have to trust them. i called the onc last week bc reese had said "ow" and touched her head. then, it was over. i freaked. for no reason of course bc her hair was falling out and reese says "ow" when she itches. but at that moment, i couldnt not call.

i was in tears with her. she understood. but she also said something that lifted my very heavy heart. she said its very rare that they are surprised by an MRI. that after watching kids progress so much (or regress), rarely are they like "oh holy cow, what?!?!" so i am going to take faith in reese's amazing progression. that when i stare at her eyes - its okay. that when i see a bruise on her head - i remember that she's 3 and has a toddler sister who wrestles with her. that i can REALLY CELEBRATE when i see her *run* in her walker at PT.  i just overall need to have faith.

next week is chemo and MRI. i just want next week to be over. i want to celebrate. with everyone. i want to squeeze reese's "there's barely any tumor here!!" face. i am in this limbo. i wanted her MRI to be here *right now* for so long. and now that it's almost here... i dont want it at all. so specifically, thats my prayer request for the week... awesome news at the MRI.

i have a 4th of july (happy things!!!) blog coming soon once i finish uploading those pics. thank you again, sweet friends. for everything.

and as always - punkfictionv4 is my IG and i update like crazy. so don't be surprised.

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. ;)

 

happy tears.

last wednesday we heard the worst news possible. that reese's tumor had grown.

i, genuinely, did not think we'd ever hear that. it came as such a punch to the gut. how this baby, who seemed perfectly okay on the outside, had such horrible things on the inside was beyond me.

the rest of the week was getting ready for surgery yesterday.

she had had chemo on tuesday. it was a long day - but we had no idea that it wasnt working.

thursday was an endo appointment.

friday was an MRI. we went to the outpatient place for that -- and it was so different. they accessed her port, we hung out, i held her and hummed while they put her to sleep... then i laid her down and waited for her to come out.

saturday, EJ hung out with reese while i took ASM to the mall for outfits for photos that we were having done on sunday. i will have a whole blog post on those [absolutely amazing, breathtaking, omgilovethem] photos.

we spent the week and weekend loving reese. loving her home. loving every tiny bit about her. loving her in bed with us, loving watching her with her sisters, loving the hugs, kisses, and snarky stares... all of it. aidan and sawyer rub her feet with lotion all the time. reese just lays and watches and relaxes.

monday was pre-op. i went in to the pre-op appointment and then had to go downstairs for lab draws. i went back to grab sawyer, then aidan... then EJ called me and said that he went to check her lab results online and that her sodium was at 128. that is so so low.

he called the endo line. and long story short, they wanted us to be admitted that night. i was already taking ASM over to my parents house that night bc we had to leave so early on tuesday - so i dropped them off and headed down. we went to the oncology floor and just watched her sodiums so that we could still have surgery that next morning.



she really felt good. like normal reese. this is how she has been at home. so so happy. it was nice to see her smiley face all evening.

EJ stayed monday night while i went home to get some things for the next day. after no sleep, lots of stress, and worried bones, she went down to surgery at about 9am? ish? i dont really remember.

EJs dad was in town so we all hung out down on the lower level waiting for calls. by 2pm, she was out and she looked dang good. some pain, of course, so we gave her meds for that. everyone seemed happy. the doctors seemed to believe that our neuro surgeon had done an amazing job, but we would know nothing til the MRI.

in true reesey form, in no time, she wanted to sit up and EAT! it was amazing. i was just shocked that she was so.... okay.

i stayed last night and loved on her as best as i can with her being in the crib. i brushed her hair 100x. i lotioned her hands to keep her happy when nurses messed with her.

this morning we had an MRI. i walked with her down, put her on the bed to go to sleep... and left. no news until this afternoon.

a neurologist came in and told me the best news ever.... they got out MORE than they had hoped. originally, she had hoped for 40%, but the fellow told us that if he had to guess, he'd guess about 80%!!!!!!! ::happydance::

our sweet strong girl.

eta: i should add. we talked to the neuros at st. jude last week as well. we overnighted our past scans. the neuro said that our dr was a badass (ok, he said it in more professional terms, im sure lol) and that he trusts her to do the best and that his approach and decision would be the same. and that ALSO, our oncologist is a consult for st. jude --- so yes, we are in good hands. it completely solidified our decisions and im so glad since our neurosurgeon did [as he expected] such an awesome job.

she looks like she got into a fight, today because of swelling. but like everyone said "whats the other guy look like?" ;) and if that other guy is the tumor --- he looks bad :)

the oncologists came in to talk to us and we have an entirely new chemo plan with 4 meds and a ridiculous schedule with side effects that will have us be in patient for a few days a month.

but for now --- we are over the moon.

thank you thank you for your prayers. God listened. He got us into the ER last week so our NS could cut that asshole tumor out... so we could start new chemo on the rest... so reese could get better.

you are all amazing prayer warriors, friends, supporters, and family.

more updates soon. but for now - thank you. and praise God.