Thursday, September 12, 2013

who i used to be.

aidan came down last week and said her head hurt. i felt her head, slight fever, gave her motrin, and told her to get back to bed and no dance. i checked on her throughout the evening, but otherwise went on with our night.

thats who i used to be.

i used to be the person people called to be talked off the ledge. telling people that fevers or symptoms, etc were "no big deal" and to do simple things to fix them.

i am not that person anymore.

i am MORE nervous when we go to chemo than i was months ago. generally i keep wondering if its still working. i mean, its been months! maybe it doesn't work anymore and no one knows! now, remember, thats not the feeling coming from any doctors what so ever. we get high 5's and "wooohooo"s and no fear of random failure, really. but that doesn't stop me lol

we went to chemo on tuesday - new clinic at children's! (yeah, im excited. get over it. you can order food while doing infusions and waiting for a room and thats pretty much the best lol).
CMC rooms1 CMC rooms2 CMC rooms3 CMC rooms4 reese finally fell asleep on the table while i played on the web for a while. her port was working fine, but our problem now is that its kind of, erm, crooked. when we were going to start fluids, it didnt draw back and when we were going to have to re-access - it did. so. we started. as long as you can get blood return, its working. ALSO, the IV machine is smart enough to know the pressure is too great as well. (so before you ask, no, there's not a chance chemo "didnt get in" or something lol)
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we go to our room ^^^, the port works fine most of the night - and then in the morning, reese was moving around and the IV machine yelled at us. reese started complaining and sure enough - fluids were basically coming out the top. luckily, we didnt need any more fluids, but we DID need to re-access her to heplock her :( i knew this would be horrible.

they numbed it quickly, re-accessed, took sodiums, and de-accessed. by this point, reese was just so upset. it broke my heart. i really havent seen her like that in so long that it killed me. really, the whole evening before, she was upset. she's getting older - so she understands things now that she didnt before. when facetiming EJ, she was crying saying "no doctor, daddy. i wan' go home" - and i pretty much lost it. she stayed awake on tuesday night until she couldnt anymore. and woke up puffy. just tired eyes (like EJ gets ha)...

after de-accessing, we waited for sodiums and papers to leave. reese slept (in her stroller - ready to go) and woke up looking better.

yesterday afternoon, reese said her head hurt. which of course sent me immediately to puke. truly. i called oncology and told them - but reese was only touching the brow bone. they said zyrtec bc she's been congested and boogery for DAYSSSS - so likely sinus. and sure enough - she hasnt mentioned anything since. she has boogers still and itchy eyes, but no more head complaints. (and honestly, her sodium all tues/wed morn was like 143 and then right before we left was 137, so that could have been it, too).

for any other kid, id have assumed sinus. for reese, i can't. an onco told me months ago, when i worried when reese said "ow" and touched her head then, that we have to remember that she is still a kid. a kid who gets sick like normal kids. my entire house was sick this past wkend minus me and reese. the school year germs killed us (mainly EJ. omg poor EJ was so sick...) - so i am not surprised that reese felt it a bit.

but me? i barely ate today bc i was so nervous about things. id see her itchy eye that was bloodshot on one side and think OMG WHAT IS THAT?! (oh, maybe her eye she's been itching). i wonder whats going on in her head. i wonder "is that a bruise?! did i see that before?! did i already mentally note that?!", but then i am reminded that ive already been told that reese's tumor isnt going to come out of her head in the form of a bruise ;) bc ive asked that, of course.

all day i have stared at reese's eyes, doing mental neuro checks and watching her. knowing i don't see anything, but then thinking "maybe i do?!" but no, she's as normal and happy as ever.

when miller sleeps extra long, i do a happy dance. when sawyer falls asleep in the car, i quietly cheer. but i literally count how long reese has slept every day - wondering if 15 mins longer than the day before qualifies for "or if she's sleeping more".... of course it doesn't. they mean like a bit more than a year ago, when reese slept all day. when she slept in the morning in the car, took a 3-4 hour nap, fell asleep in the car in the afternoon, and went to bed by 6-7pm. a 2 hour nap a day does not qualify.

i'm just not the same. and thats okay. i will never be the same, right? like a friend said, when reese calls me from college and tells me she has had headaches, ill demand an MRI. ill never be able to relax 100%. i wish i could. i wish i could be as free thinking as i was a year ago, but thatll never be.

but you know who else ill never be? someone to takes advantage of the day. someone who lets their kids play without joining in. i have played on the floor with blocks more in the past few months than i have in years before. because i have realized how much it matters. i don't edit during the day time unless kids are sleeping - not even just playing quietly - bc i want to BE THERE with them. thats not to say that sometimes i want alone time - or that i dont get on facebook from my phone while watching mickey's clubhouse, but we sing a lot more songs. read a lot more books. live a lot more life than who i used to be....

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i have friends who i love and text and message and cry with about things that i didnt even understand a year ago. i am grateful for so much more. i feel so much more. sometimes i wish that i didn't, but that doesn't change the fact that i do. i dont want to be numb.

NOW let me update on the awesome things!!!

1. reese had her first PPCD screener :) it was so great. it was, first of all, amazing for her to be around people who chatted with her like they understood everything she said. ;)

2. soccer has started. so saturdays are filled with 2 games almost every wkend.
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3. my bro/sil had their 2nd baby - a BOY!! reese and i went up on tuesday morning, to see them, and she was smitten within minutes. good thing she's getting her own little baby this xmas.

4. which, btw, we are naming Corbin Rose. and here is why....

5. school has been going great for AS and M. i knew that aidan would continue to love school. but im glad sawyer and miller do as well. makes me day easier knowing they are happy. reese and i took our alone time the other day to go for a walk. it was so nice.
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so. yeah. who wants a prayer list?! :) for our friend phoebe, for the family of 80, for our newest friend jaycee, who just found out 2 weeks or so ago that she has leukemia. that entire transition period is so hard. and for reese, that she continues to heal, that she feels better every day, that the tumor keeps shrinking, and that random things are just random things - and nothing bigger.

and that i can handle waiting til october 17th for our next MRI.

i love you guys so much and i feel the prayers. please share them with our friends tonight, too.
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  1. I about panicked for a minute thinking that baby Reese is holding was Corbin and I'd missed the whole thing. LOL!

  2. That last photo brought happy tears to my eyes. They're beautiful. :)

  3. Thank you for the paragraph on being present: playing with your girls, not being on FB instead of watching Mickey, singing... it's good to be brought back to reality every once in a while. And, as always, praying for sweet Reese and the rest on your prayer list!

  4. I know *exactly* how you feel. My son was diagnosed with a rare heart defect at 18 months (after a year of the doctors telling us his hear was fine, it was just allergies, he needed his adenoids out). He had it repaired at 21 months. We were told it was perfect and he would need no further surgeries and just a follow up at a year. Eight months after the original surgery, he had another (in a different state) to re-fix the problem AND correct damage done from the first surgery. Oh, and he needed a g-tube placed due to complications from the first surgery. Now, I worry about every bruise, headache or runny nose from my other kids. I get it now. Your kid can get sick. And maybe die. And the doctors might tell you everything is fine, but really he has a HEART DEFECT. I often tell people I am not the same person I was before Apollo sickness.

    BTW, my Apollo is almost the exact age of your Reese :)

  5. I love that you're playing with your girls more often now - some brightness in all this darkness. As always, thinking wonderfully positive, beautiful thoughts for the continued healing of Reesey and all her little friends! Love you guys and best wishes!

    (Oh, and great thoughts for her October MRI. Just picture all of us standing there holding your hand when the time comes!)

  6. You don't know the inspiration this little girl is. Days when i'm not feeling it (aka being 24yr old girl trying to figure out my next move in life ugh) I look at your reese and think she is fighting for life, you get the f out of this mood ur in and appreciate the fact that you're here n you're only being a bitch because you have cramps... I wish cramps were your only problem, miss! *someday that will be a huge problem in your house LOL* I pray for reese often, this morning she is in my thoughts <3 - katrina