Friday, December 28, 2012

new chemo. round 1. part A1.

yesterday morning, i packed up everyone's stuff, dropped ASM off at my parents' house, and reese and i headed down to children's for the first in-patient stay for the new chemo.

All of our stuff lol #reesey #gingerfight #chemointumorout

the whole process takes forever.

you go and check in, fill out the same paperwork every time, get labs drawn. then go back and wait. you get into a room where they will, then, access her port. sometimes, she can just do port-drawn labs, but sometimes not - depending on what chemo day it is.

then we start fluids.

Silly #reesey :) #chemointumorout #chevronscar #rainbowscar #gingerfight
after that, you wait for a bed on the hemoc floor.

I wanna smooch those lips!!! Already tired from the day and we have only done fluids! #reesey #readyfornap #chemointumorout #gingerfight

then you hustle your butt over there and do more tests.

one of the tests is a spec grav. yesterday, her spec grav wasnt "right" at first pee. so we had to wait until it was. which means chemo wasnt ordered until the evening. we didnt START chemo til about 8pm.

all day, reese was tired. we cuddled. she slept. we just hung out, quietly. she wasnt really acting like herself, but she's been up a LOT recently at home - so i figured she was catching up.

#reesey sleeping some more :/ #chemointumorout is tiring. #gingerfight Lucky me. #reesey #gingerfight

last night, we slept in the same bed and she just laid on my chest as cozy as could be. she didnt fuss for sodium draws, she just.... was cozy.

this morning, she puked. i had already had a neurosurgery consult come in yesterday and then they did rounds on her and checked her "squish" again this morning - where her last surgery was. after she puked, i was certain - that was it -- she had something wrong with her shunt. she puked again, they started zofran (and also the dex -- steroid -- in case she needed surgery). they sent us to ICU to be watched and ordered a CT scan.

Back to the ICU for a few. Then a CT scan - she has some symptoms that her #shunt might not be working :( #reesey #gingerfight #prayersforreesey

her sodiums slowly dropped -- 128 - then down to 123. ugh. i couldnt remember if she had gotten her keppra (seizure meds) before or AFTER she puked the 2nd time so i just prayed she didnt seize. her HR went down into the 50-60's when sleeping - which is VERY low for her.

i had a NS come talk to me and she showed me that there's no fluid collecting in her brain - its puffy between the skin/skull, but thats it. she showed me scans - totally normal. she also showed me before and after resection... wow. its like... so much smaller. i am amazed. and blessed.

here was the problem: they have to pump reese with fluids bc of the chemo. that, alone, will jack with her sodium levels. THEN, she wasnt peeing out. so, she was just diluting it all in her body. we didnt give her the ddavp this morning so we just waited for her to pee - and finally she did. her sodiums went back to 128, 135... and so on. when they hit back at 128, she was a different kid. totally happy, laughing with nurses, being a jokester... everything.

#reesey 's sodium levels went down to 123 and her HR dropped bc of all of the fluids. Her head/shunt seems to be okay so now we just watch in #icu #chemointumorout #gingerfight

Silly today #reesey #gingerfight


EJ came up after work and then we moved *back* to the oncology floor - and he is there tonight. he brought the headbands (remember these? haha) for her to wear for compression on that squishy side.

2012-12-28_003 2012-12-28_004
Compression headbands #ftw #gingerfight #reesey

its funny, though - an oncologist came in this morning to talk about possible shunt surgery and said "youre so calm!" and i guess i was -- but here's the thing. when you have already had 2 craniotomies where they cut out a piece of your child's skull, lived in ICU for weeks, in the hospital for more, had a chemo fail, been told that if you didnt do xyz, that itd be "too late" or that "youd have 2 months with reese left".... a shunt surgery does not scare me. its a means to an end at that point. am i glad that she didnt need it? of course. but anything to keep reese healthy is whats the foremost in my mind.

what scares me is if there wasnt a means to something. if they didnt know what was wrong. if they couldnt fix her. i hope to never ever feel that feeling [again]. that gut wrenching fear. to where you run to a toilet.

i am not "happy" about how things are - but generally, i am happy day to day. i have to be. i have to be calm and rational and let the meds, the doctors, God, everyone... work. i pray for peace - and God has, gracefully, grated me that for now.


  1. You have an amazing attitude about all of this. I know my family went through so many ups and downs with my nephew and his brain cancer. Every day is different. Some days are good. Some days are bad. But there is a light at the end of the tunnel and each day takes you closer to that. One step at a time and she will make it through this....ALL of you will make it through this!! I hope that Reesey has more good days than bad, and I hope that you continue to find strength and peace in the only one that can provide it....God will lead you through this! Always praying for sweet Reesey and the rest of your family!

  2. you are so amazing and i love you

  3. So glad to hear she didn't need more surgery! And I love all of her hats! What a strong, smiley girl! Continuing to pray, for chemo success, no more surgeries, and PEACE.

  4. What a wonderful attitude. God will take care of the rest...

  5. if i have learned anything through my son's open heart surgery it is that you must celebrate the smallest feats. seeing those pictures of reese smiling, in spite of everything, that's a reason to celebrate. you have a strong little girl, she is such a little miracle and someone to be proud of! i am happy to hear you're hanging there each day. keep on fighting, keep on celebrating each are doing fantastic, and thank you for keeping us updated. all my love and prayers for your family.

  6. Amazing mom. Amazing daughter. Amazing grace.

  7. I am praying for her and all of you - so very much. Sending my absolute best and love, from a family in NYC. xx- Monica