Friday, November 23, 2012

modern medicine.

modern medicine is amazing. i sit and watch the nurses and doctors, listen to what they say during rounds, we chime in with what we think... but in the end, the medicine is amazing

endocrinology is unreal, first of all. the only way i can explain it, without saying to wiki, is that it helps every part of your body that you take for granted. the awesome thing is that they can synthesize almost anything, it seems. reese takes meds to signal her thyroid. she will have meds to help her adrenal glands, she takes meds to level off her sodiums... all of it. things that your body does naturally - some people just can't do anymore. [i'd like to take a min to say that these things don't seem to be because of the tumor. they are because of the surgery on the tumor -- too close to her pituitary].

chemotherapy is fascinating as well. i have, in the past, never really taken the time to look up anything *specific* about it. i knew what it was. or rather, what it was supposed to do. but i didnt, however, know that there were diff types of meds and how, exactly, it worked. reese's chemo is vincristine and carboplatin (a few people have asked). she got her first dose of both tonight. last i talked to EJ, she was laying with him on the couch/bed all cuddled up and seemed tired, but okay.

her shunt was put in a few days ago. hers is subdermal so its between the skull and brain. she will have that forever. since her skull is not totally formed back together after surgery, the fluid still comes above, a bit, and then the valve on the shunt takes it away. in 6-8weeks, it wont come up at all. its amazing, actually, to see the transformation. this past wkend, the amount of fluid up there was astronomical, but now... back to her big ol' round head.

now we get to other things -- like steroids. holy geez. even though she'll be hydrocortisone dependent - that is physiological and will only be enough to match what her body will make. but because of the surgeries, she has been on a pretty hefty dose of a different steroid.  paired with her "third spacing" which you can read about HERE, she is... um... bigger.

she came to the hospital at 22lbs. which was... small. she felt like a baby. i could pick her up and toss her around like i would a 1 year old. she was 24lbs (?) at her 2 year appt and also at her ER visit about 6 weeks ago.

but today she weighed in at about 32lbs. ::faint::  which, if you touch her, is all fluid. i tell people to think about the scenes in wall-e where the humans, who have since gained weight because of not being mobile, have to walk --- thats sort of how PT goes (which you'll see). but soon all of this fluid and steroid induced gain will go away.

like i said on facebook, this is part of her journey - so i will write about it. we make jokes and call her "sumo-reesey", but thats how we cope with the change, more or less. there is nothing we can do to change the situation we are in - so we just keep moving on.

she still looks like reese. but i just wanted to "warn" you before looking at the pics. ;)

the hilarity of yesterday included me grabbing some more fruit loops for her to snack on in her cup (hey! at least she's eating!), but she demanded the HUGE box - and why not have that for thanksgiving, right! ha!
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Steroid and fluid puffed #reesey ;) #prayersforreesey  #gingerfight

PT is always a bust ;) but soon she'll grow to like it. especially since she'll be able to play in the playrooms soon (once she's done with her 10 days of c.diff meds).

#reesey #gingerfight #prayersforreesey #physicaltherapy :)

#reesey #gingerfight #prayersforreesey hanging out :)


today we moved down to oncology. what a move. fascinatingly enough, EVERYTHING in the room had to be thrown away or come with us. its also a super nice floor - with playrooms and desks and family areas and... a view :)

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and then she started chemo. they said several times how anti-climactic it would be - and EJ said it was just that. i stayed all day because i thought that we would start, but they said they werent going to until at least 6pm - so i had to pick the girls up. last i talked to EJ, they were cuddling :)

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thank you for your continued prayers. i will keep you updated, tomorrow, on how the chemo went over night -- hopefully she sleeps easy and isnt too sick. they pumped zofran in her before the chemo - so lets hope that works.

we have a long road to go. i am nervous, excited.... i cant even type out the emotions that i feel at all times. but for right now -- i am ready. i am ready to kill this tumor. i am ready to bring my baby home. i am ready to hold her without thinking that i'll pull a wire or hurt her some how.

we are ready for this to be our new normal.


  1. Love, hugs, prayers, high fives, and deep breaths. You guys are amazing. Doing what you have to do to rock this new normal but, I just want to say how proud I am of you guys. I know when we say we simply can't imagine, you know what we mean. I would just hope we could all run with it the way you guys have. Reesey is so lucky to have such an amazing family. WE LOVE YOU GUYS! Praying always and cheering you on from Ga.

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  3. God bless you little one. We pray for sweet Reesey every day and I show the kiddos her photos....and Luke and Grace ask about the 'little girl with the red hair' all the time. I cannot imagine what you are going through right now. May God continue to hold Reesey in the palm of his hands. Hugs, prayers & cheers from Maryland!

  4. What a sweet girl and family! Thank you for sharing your story. Little Reese has been in my prayers continually since I learned of you all from Casey's blog. I no longer have a thyroid (thyroid cancer) and have also been blown away by the endocrine system. It's amazing how much it truly does affect everything! But how blessed we are to have meds to help compensate.

    Hang in there! Prayers!

  5. Poor darling. I'm praying for this sweet girl that God will have mercy on her...and your family.

    God bless,

  6. Prayers and good thoughts for the strength of Reese and your entire family <3

  7. Amanda, you and your family continue to be in our prayers and thoughts often. Hoping for a good night's rest for your sweet girl, and continued healing.

  8. Hi! I remember you well from the knot/baby message boards. I was antes22. Anyway, I'm so sorry to hear everything your sweet family is going through. You are being such an example of strength and faith! My family is praying for you!

  9. ohhhh I love the pictures of your little Reese. She is so sweet, beautiful and precious. She is perfect. I have a girl the same age and I cant imagine at all how hard it must be. xo

  10. Hello, I found your blog via Casey Wiegands blog and I have been following Reese's story for the past few weeks. I want you to know that I am praying for you, Reese, and your entire family. As I am sure you know, you have so many prayer warriors cheering you on and I am proud to be one of them:)

  11. You do not know me, I learned about Reese from a twin mom friend that is also your friend. I just wanted to let you know that Reesey and your whole family has been in my continued prayers. May God bless your Sweet Reesey. Hugs.

  12. I also found you through Casey's blog. What precious little fighter. Prayers are with you and your family.

    p.s. did they not tell you about sugar and the immune system when she started chemo? maybe it's different for children but in our center we warn to avoid sugar at all costs during chemo.

    1. no - and i would guess that it would have to do with the type of chemo - as well as the parts of the body the tumor is affecting? even the pediasure that she is req'd to drink, basically, has some sugar in it. and our drug packets also don't mention it at all.

    2. It has to do with the immune system which is important to keep as strong as possible regardless of the type of chemo. Sugar breaks down the immune system so thats why its discouraged. Obviously a little bit here and there isn't going to be a big deal but you will likely want to avoid it if you can.
      Have a blessed day.

  13. I am so sorry anyone has to go thru all of this,but some day you will look back and know it is all for a reason,for this will make you all stronger and Reese is a fighter and will make great strides ,I believe when she gets home her sisters and family and friends will be the best healing she will have.I cry when I read the posts and see the pictures,but it helps and i feel apart of the special people who are helping and praying to get her better.I sent you a email about something I'd like to do if you ever get a chance to read it let me know.thanks Patti from Iowa

  14. Reese, you, and your family have been on my mind a lot since I found out through past bumpies. Praying for success in treatment, comfort, and strength.

  15. Amanda - I am praying for sweet Reese. You and your family are in my thoughts every day. -Tara (tms1st)

  16. Praying for your sweet little girl and for your family. Words cannot express how sorry I am that you and she are facing this. Lots of love and prayers coming from me.