Tuesday, November 20, 2012

roller coaster.

i hate roller coasters. like, hate. when i was a kid, my mom would have to stop rides at the town fair bc she could see me slowly sinking into the seat as my face turned green. i dont like that feeling in my stomach of "holy shiz what is going to happen next?!"

ironically, that is my life.

on the 16th, EJ stayed the night. her HR was high and we persisted about her swelling head. they had drained some to test and did other tests assuming it was an infection. they did find out that she had c.diff. ugh.

luckily, that is combated with abx and so on those she went. they also put her back into the ICU on the 17th. which, by the way, was good. not that the neuro floor didnt do a fabulous job (ish. dont get me started...) but we are still in the "no, i mean i need help immediately!" phase. so ICU is where its at.

we did, however, get shafted to a shitty room without a view of the city... ;)

i have no idea what happened saturday. i know that we spent most of the time dealing with the c.diff. where everyone had to wear gowns when they came into the room. which was weird. and we had to wash our hands a ton.

::eta:: I REMEMBER what happened saturday!! a maid came!! thanks to my uncle bob :) it was awesome.

she also got a feeding tube over this ordeal - which was helpful. she was looking suuuuper puffy. what ended up happening was [now i may get all of this wrong, but im trying here...] that when your body doesnt get enough protein and only has liquid, it basically takes it into the tissue. so she looked like a huge cream puff. just swollen all over. so the feeding tube just pumped pediasure down her. she had gotten up to about 28lbs (unheard of for her. 24lbs has been her max ever) and is now coming down.

on sunday, i took the girls to lunch at OTB. i needed something fun. EJ always has fun things for them when he is home and yet i am not lol so to lunch we went. and it was delightful.

Yesterday #millerpaige at lunch #otb #sillyfaces

#aidkaid #sawyergrace #thuglyfe or #hippies

i dropped them off at my parents? i think? i dont remember taking them to the hospital, but either way - i went up there. and reese's head was still large and in charge.

#reesey needs for her head swelling to go down :( #gingerfight #prayersforreesey

i stayed sunday night and it was "eventful" as she had been very.very.sleepy. and just wasnt happy :( it was miserable to see.

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finally, we got a neuro to come in and drain her head. 85 or so ccs later, she felt a bit better. earlier that day, we asked some [very awesome] friends to grab her some headbands per neuro's request... so that when they did drain, reese would have a "barrier" of some sort. not too tight, but enough... maybe.

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i wanted my baby back :( this was not like her.

Headbands for swelling? #gingerfight #prayersforreesey #reesey

on monday, EJ brought the girls up to see her and swap so I would take them home for the night. they were, again, happy to see her. EJ explains everything that they ask - so the feeding tube, the machines that pumped meds, all of that -- and it helps. they have a lot of q's, but rarely do they act scared about the whole situation.

#sisterlylove #sawyergrace #aidkaid #reesey #gingerfight #prayersforreesey before port surgery #chemointumorout


i left and reese was due to have her port put in yesterday. i was happy - one step closer to doing things that would let reese come home soon. the IVs and such were getting to be a huge pain in the ass, as well. they wouldnt draw back and she kept having to have finger pricks. :( which, by the way, are miserable.

EJ brushed her hair out, like the good man he is.

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after the surgery, her head was huge. just huge. they had to drain again and this time got 105? ccs out. thats 3.5oz, btw. they did a CT scan and said that there was a lot of fluid (obviously) that was just backed up and coming out the top of her head. i will spare you those photos - it was just... terrible.

the CT scan also show what they thought was tumor growth.

the pit of my stomach felt the same way that it did the day i found out she HAD the tumor. but they said that there was so much swelling and stuff, in general, that they'd only know for sure with an MRI this morning. so instead of getting a shunt this morning, they drained last night and we waited.

EJ decided to gear up with reese and cuddle last night after the tap.


all night i prayed. i cried. i prayed how unfair it would be to come all of this way only to be told that it was growing. i was sick to my stomach. i prayed for peace and went to sleep and went up to the hospital this morning to see the best face i have ever seen.

reese was so... HER!!!


she heard me and hollered out "mommmyyyy!!!" and, like i do, i called back "reeesseeyyyyy!!" and she was full of smiles.

and sass.


and off to the MRI she went. during this time, they moved us to a new room with... uh... natural light! thank heavens bc a window facing a damn wall was depressing.


we waited in our new room for her to come back from the MRI. and when she woke up completely, she was our normal, happy, funny girl. we played games, she hilariously mocked my efforts in making her laugh, she asked for drinks and food and i just.... got even more excited for her to come home soon!!

#reesey #gingerfight #prayersforreesey you can see the chemo port thing (available now but will normally be under skin) #chemointumorout

(you can see the port entrance down there by her belly --- that is open. it will be, normally, hidden under her skin)

the neuro came in and said that tomorrow morning she will get her shunt. a subdermal shunt that will go between her skull and brain and then down behind her neck and allllll the way down to her belly (all under the skin) where, then, the body will reabsorb the fluid.

honestly, i am very happy about the shunt. the pressure caused by the hydro is what takes reese away from me. what makes her not the kid that i know. with every drain, she feels better. and for that permanently to be there? sounds perfect to me.

i had to leave to go grab the girls by about 3pm. early in the evening, the oncologist came by to talk to EJ. he said that maybe there was growth, but things are going to stay on the plan. tumors are like sponges so when pressure is released, it may look bigger, but not actually have grown (and if so, not by much). so i was relieved. EJ signed consent forms to start chemo this friday. the dr mentioned to EJ that they had talked about the option of resection, but for now we will not - this part of the tumor is in a dangerous area of her brain and surgery could paralyze her right side (if not more). we will let the chemo do its thing for a bit. see how it works. with that and the prayer warriors that we have on our side, i feel confident this will do the trick.

i have felt the ups and downs like a carnival ride for the past few days. i have hit rock bottom and cried my eyes out thinking the worst scenarios. i have been absolutely filled with joy to hear her call my name and get legitimately psyched to see my face.

but now, im ready to get off of the ride. i know its not time, but i can see the end is near. shunt and chemo. thats all we have left before we can go home. her DI has settled on a nice DDAVP dosage and hopefully everything else will fall in line. our lives will be full of ups and downs for years. but this wkend took a toll on me. not knowing what is wrong with your child is the worst feeling in the world. but also, knowing something is wrong and not being able to pinpoint the source to just make her feel better is even worse. we have some amazing doctors on our side -- every prayer that i have heard people say about guiding those who are taking care of reese have been heard.

this is a week of thanks. give thanks for your babies. give thanks for their health. give thanks for the doctors who help them if you are in similar situations to mine. give thanks for every tiny piece of support that you have throughout life - your friends, your family, and strangers who you have inadvertently made an impression on, as they have made an impression on you. give thanks that God hears our prayers every day.


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    1. (Sorry for the double post!)

      Jesus, Amanda, I felt that roller coaster just reading this post. My stomach dropped and I wanted to cry. I literally cannot imagine how you are feeling, or how you keep going with a positive attitude. The mental and physical exhaustion must be overwhelming.

      I think about you literally every single day. I am grateful that you had such a strong family foundation because that will carry you all through this. I can't wait until we can all one day say, "Man, remember how much that sucked??" in retrospect.

      I will pray tonight, for Reese, but also for you and EJ. Several weeks in, you must just be drained. I pray for your strength, rejuvenation, and comfort. I wish I could hug you.


  2. Thank you for the update. You and your family are just amazing and so incredibly resilient. Our prayers continue to be with all of you.

    Grateful and thankful are words that are way underused in daily life-your updates are a great reminder of the real meanings of those two words.

    Blessings as always for you, EJ, Reesey and the rest of your red headed, beautiful bunch.

    The Sly's. Carol, Walter, Marion and Lillian. (thatsit!)

  3. Oh Amanda. My heart goes out to you. There was an audible gasp in my church when I was explaining your situation during prayer requests. Know there are "e-people" praying for you and complete strangers praying for you. He hears. He has been hearing. You're Reesey is on the mend and you and EJ are doing terrific in supporting her and A,S,M in this journey.

  4. I am crying and praying for your family and Reesey, as well. Keeping you all in my thoughts and prayers!

  5. Reesey sweet Reesey...I'm a guy so I'm not great at mushy words, I'm not as sensitive with what I say. But I can say we are all praying for you and your family. I can't imagine what you guys are going through. We love you guys!

  6. I just read through your story, I love that you stay strong for Reese. I know the world of pedi onc too well and although you never want to have to teach your kids about tubes and lines, you are doing a great job of it. With your little ones, I thought you might get a good use of this: http://chemoduck.org/

    Your hospital resource room may have some, but he is a duck who has a bandana for lost hair, and a port, just like the little chemo kiddos.

    Wishing you well!

  7. I have been reading your blog for a while now. When I read your first post about Reese, I was shocked. I couldn't believe it. I thought how emotional this is and how devastating this is for your family. I pray for Reese, your family and the doctors often. I have also shared your story with my SS class, who are also fervently praying. I pray that she will soon be able to come home. Just remember that God is able.

  8. I hate this so much for you. These pictures break my heart. I can't imagine the emotions you're dealing with on an hourly basis. I think about Reesey and you family everyday and hope she gets to go home soon!! I can't wait for that day, so I know you dream of it every second. <3 Keep your head up. You're an amazing, amazing mom and you have an equally awesome husband by your side. Reese is so lucky to have you.

  9. I can't begin to imagine what you and EJ are going through. I know it must be hard to stay strong but you are doing it for your family and I admire that. God is in control and I an thankful every day that he knows when I don't. Love you girl. Hang in there. All my love and prayers, Allison

  10. Lifting you all up in prayer. i cried through the whole post it breaks my heart to see your baby be so brave. You guys are doing an incredible job, keep on keeping on! I pray for your continued strength and peace as the days progress.
    I am so sorry your sweet girl has to endure this. Thank God for the modern medicine options that we have. I pray that stupid tumor is NOT growing and will soon shrink down to nothing. i am even praying that her pituitary gland gets restored. Love and :HUGS: to each of you!