Thursday, December 18, 2008

DELAYED INTENSIFICATION_day 5

We started DELAYED INTENSIFICATION on Monday and it is a whopper.  2 different IV chemo's once a week  //  the steroid twice daily [5mg, where she was only getting 2mg back in Aug] for 7 days on, 7 days off  //  a stomach protectant [for the steroid]  //  anti PCP pneumonia twice daily Mon & Tues.  //  and a peg shot that was administered today.  This cycle is 8 weeks long.  

Obviously Monday was a big one and she has felt rough ever since.  Nauseous and has barely eaten... random bouts of roid rage... and plenty tired.  She has been sleeping through the night 70% of the time though... which is good for everyone. [scratch that for now... she was up every hour last night]. She barfed on the way down the canyon this AM en route to our 8:30 clinic and we had to pull over in the middle of a snow storm on the exit ramp.  All hands on deck for a rapid roadside clean up... and the whole fam rolled into clinic late, smelling awesome.

She saw Santa but wasn't impressed.  His elf gave her a bear and she mustered a "bye-bye".  She scored another cool hat off the clinic hat tree... took down some detailed notes regarding her blood counts... then received her PEG shot.  

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Rogan's thorough notes helped me put this together tonight.  A look at how her blood counts have fluctuated since her 8/2/2008 diagnosis.  Wow.

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Here is a shot from Monday's clinic... sad that this is one her favorite things to do.  If you come to our house [100% healthy and sterile] you are guaranteed a free check up from Rogan MD.

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Here are the girls.  Rogan loves strawberries.. she calls them "gomm bees" [see the post from 9/20... Strawberries helped us get her walking again!]

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Rogan likes to throw Elmo, Cookie and Coco in her stroller.

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A couple minutes alone and Rogan had gnawed through a few crayons.  Yikes.

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Rogan picked out our Christmas tree.  We decorated it with pics of our extended family, as we will be quarantined again by then and will not be able to see them.  She loves to re-arrange the ornaments daily.

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She likes to comb her hair... it's growing back a little... but will get wiped out again with start of the steroid.

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And that is it for now!  Thanks for reading and for your continued support.  This will be a tough 8 weeks and we are staying hopeful that Rogan continues to respond accordingly and we only have to go to Primary's for our scheduled clinic days.  Thanks for the love and positivity.  //  Crawford



12 comments:

Lindsay said...

Rogan is such a trooper and I love reading all of her updates and seeing pictures of the whole crew. Just wanted to let you know that the whole West Lake gang is thinking about you and wishing Rogan, Coco, Casey and Corey a Merry Christmas and healthier and roid rage free New Year :)

Astle family said...

Rogan is looking great I hope you are all hanging in there this holiday season we will sure miss you all! coco is getting so big we can't wait to meet her we wish you all a merry Christmas and a better, healthier next year!

Kali Girl said...

love the hat Rogan. Hope you are feeling good for Christmas. Merry Christmas guys.

Currie said...

Just checked in and am so impressed with the fact that we can figure out what you all are going through and the progress and how it compares with the norm, thanks to Rogan's notes!!! We just want to wish you all a very special Christmas together, you and the girls are so beautiful and you all are in our thoughts and prayers!!

Kristy said...

Thanks for the update. I loved seeing pictures of the whole family. I hope this 8 weeks is the real kicker. and things will improve from now on. The hats are awesome. I was thinking you should try to snatch one for a white elephant gift for the family party next year. It will be the hot gift, like the "I love Justin" undies
Thinking of you guys always, Love, Aunt Kris

Kaye said...

Casey and Corey ~ Your strength and courage is inspiring. Thanks for keeping us updated and entertained. Your girls Rogan and Coco are absolutely beautiful. All the love and positive energy I can muster is coming your way daily. Love to you all~ Auntie Kaye

barbchuck said...

Thank you for the updates you are so good about sending. I love the orange hat! Hopefully Rogan got to keep it. What a shock to see how Coco has grown since her last picture! She is beautiful. I couldn't believe the crayon-eating shots! Yuck! What a mess! I am so sorry to hear that Rogan is uncomfortable once again. Is she able to understand at all what is happening to her? Much love and many, many positive thoughts to all of you!

brooke said...

And we are still praying. All the love in the world is being sent your way:) And seriously Coco is growing so fast! She is already a little girl!

Beth said...

Always love the pictures. I know where I'll go next time I need a check up...Dr. Rogan. What a cutie she is. The hat is to die for, it may become the new fashion rage. Stay strong, you guys are awesome. Merry Christmas. Hugs and Kisses, Grandma Beth

SUZAN said...

I am so thankful that you have taken the time to keep us up to date with this blog. I really love reading it and you do such a great job with it! The charts you posted are pretty amazing and eye opening as to the roller coaster ride her little bodie is on! I will be needing a check up from Rogan MD, but I will wait until niether myself or anyone in my home has been sick (if that day ever comes!) Rogan, give your Mama a squeeze from auntie Suzan!
Love you all!

Vickie Ferncez said...

Hello Crawford family!

My thoughts and prayers are with you guys daily! I love reading all the updates. You are doing an amazing job! Merry Christmas!! Big hugs, Vickie

Dianne Young Erwin said...

You GO girl! So glad to see her charts. Looks like things are going up! xo We are sending positive vibrations through the skies and into your chimney tonight. Merry Christmas to your beautiful family. GOD SPEED! Love the Erwins.