Sunday, August 24, 2008

Week 3

Fascinating...right?


Week 3 can be classified as “difficult”. Our Monday 8/18 clinic day was a relative breeze, with no surgery or transfusions….no surgery scheduled for this coming Monday 8/25 [due to her good 7 day benchmark] but we are expecting transfusions…potentially both red blood and platelets. These are not painful…just time consuming and any time in the hospital is not fun.

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All the meds have officially set in and are manifesting their expected “side-effects”….the steroid in particular…which she receives twice a day. She’s not yet “Chucky”…but let’s put it nicely; if she is not eating, watching Elmo [A-mo] or going on a walk [Wok!]….she is NOT HAPPY. As mentioned earlier, the steroid has also made her appetite spike off the charts….big carbs in particular. I was not there to witness it, but it is claimed that she ate an entire Pizza during one feeding. Fortunately or unfortunately, depending on who is on bathroom duty, she still enjoys her veggies and fruits...particularly frozen peas in a cup…which she can be seen above, sharing with Big Bird [who by the way, Sesame Street mgmt needs to re-staff whomever does his voice…because it is creeping me out] She feels 10 lbs heavier, has a bit of a double chin…and towards the end of the day her belly begins to look unnatural.

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…still no walking. It has now been 42+ days…and we are getting anxious. Our doctors assure us that she will be cruising soon, but it is still very difficult to accept…and it obviously has her frustrated. We did get her to stand a bit in the beginning of the week at her new stove…making, you guessed it: Pizza. [FYI, please don’t say that word in her prescence…because she will demand it, regardless of the time of day.]

On the brighter side, she is virtually 100% potty trained on both fronts. A slight case of “thrush”…which is believed to have made things slightly painful down South, is to thank.

She is holding on to her hair so far…so hopefully that means that all the chemo is too busy killing the Cancer to be bothered with the hair.

Move over Mom & Dad, Elmo is now sleeping w/ us too. [fortunately we were just gifted a king size bed! Thank you!]

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Special thank you to our Norfolk Avenue neighbors for the nightly meals…that is a terrific program and is so much appreciated.

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...and a huge thank you our friends and family for all the fun gifts. Some days, it is tough to get just 1 laugh or smile out of her. Above is a rare smile captured upon the arrival of her new kitchen set.

...and the BIGGEST thanks to her Mom, Casey...for so gracefully dealing with:

_her "roid induced" demands
_"roid induced" fits of whining and crying 
_midnight trips to the bathroom [seemingly every 10 minutes]
_midnight trips to the fridge [seemingly every 10 minutes too]
_and just plain clinging like glue to Mama

You lead by example.  I LOVE YOU.

16 comments:

ishybeanie said...

what a cutie, I love that she is obsessed with elmo. Kim

brooke said...

Thank you for keeping us all updated. I love chubby thighs! Hopefully all that pizza will help with that:)
We are still praying our little hearts out. All our love.

SUZAN said...

I love her pop gut! She is such a little cutie!!! I can't believe she can eat a whole pizza, wow! It is great to hear any news, but especially good news, like no surgery :) So thanks for keeping up on the new posts! I can hardly stand that I can't see you and haven't been able to talk to you. This is helpful for me. I love you guys, keep up the great work!

barbchuck said...

I check everyday for updates and was thrilled to find this one, that even has good news. I absolutely cannot believe that your tiny little angel can put down a WHOLE pizza! Loved the part about your neighbors bringing meals for you every night. That is very special. What loving, fun, and understanding parents the two of you are! Times like this bring out the true core of people. We love you and are rooting for you.

Astle family said...

I am so glad things are looking good. we think about you all day, every day, and way to eat pizza rogan that is pretty impressive.

Katherine Foulger said...

Man she's cute! We love you and continue to pray for you all and are anxiously awaiting the "Casey is in labor" phone call. Congrats and good luck! Good thing Auntie Camie is there!

Maren said...

I'm Camie's friend from NY. She has kept me posted on baby rogan and my heart is with you all! You are a great family (from what Cam tells me) and I am sure you will get through it!
All my love xoxoxoxo

Anonymous said...

I love being able to read the updates. We think of you daily all of the time and are so happy for the positive news last couple of weeks. I cannot comprehend the difficulties you are faced with and the strength must take every day. We are here to help if we can help in any way possible. Waiting for news on the new baby too!

Love,
Matt, Andrea and girls

the smoots said...

Thanks for the wonderful updates. Sounds like Rogan has an appetite like my little Allie. A whole pizza??
You are all in our prayers. My little Anna prays for "baby rogan" every night and morning. We would love to send Rogan some little gifts (no flowers, promise) but I don't have your address. Would you mind emailing me your mailing address?
juliannesmoot@gmail.com

Lots of love,
Steve and Julianne

Rachel said...

ew i love her!!! happy things are going well and that she is keeping domino's in business.

Amy said...

She is so adorable! What a cute little kitchen set, I'm sure she will have lots of fun with that! I'm glad all is as well as it can be and please know that we are thinking about you a lot! If there is anything we can do to help please let us know. (Even it is delivering pizza daily (or nightly) to your house :)
Love,
Amy Frazier and family

Beth said...

That last picture of Rogan reminds so much of Casey. WOW! So exciting to get good news. Gary and I think of you often and always send good vibes your way. Hugs & Kisses, Grandma Beth

cielo said...

I'm a friend of Darcy's and she passed this along to me... we are sending on MONDO good vibes and thoughts and prayers.

big hugs,
cielo & buddies from simple shoes

WC said...

Sadly I can eat a whole pizza myself too...Rogan and I are so alike! :-)

Jai and Siri said...

Hi Corey and Casey,
Just saw the news from Jamie Leachman's email. Our thoughts and prayers are with you. I was happy to read on your blog that Rogan is in the highest cure rate category. Best wishes to all the family.
Jai Nair and family

Ravi said...

Corey and Fam, thinking of you guys from the East Coast.

Ravi