Monday, October 20, 2008

Interim Maintenance!

Again, sorry for the delay… Rogan has been feeling so well that we have been spending every free moment with her and enjoying it to it’s fullest. "Filling the canteen" so to speak, before she is scheduled to get the aggressive chemo again and predicted to get sick again. She is back walking and able to get in trouble again. She has so much fun and is so wild at times, that Mom thinks she may have eaten a few coffee beans that have fallen on the floor. She began her 3rd course of chemotherapy this past Monday, 10/13. It is called Interim Maintenance, and it will last 8 weeks.
_She will receive 2 different chemo drugs intravenously on each clinic visit and no chemo drugs orally, from home! [there’s no reasoning with her to eat bitter chemo pills lightly sprinkled over her delicious vanilla yogurt; regardless of the presentation.] I believe that they will be ramping up the IV doses on each clinic day, based on the side effects she experiences and if her blood counts can maintain a sufficient level.
_she will not need to get the spinal tap until 3 weeks from now
_bone marrow aspirate will not be until 3 weeks, as well.
Some slight side effects from Monday’s clinic are now manifesting, combined with some fresh teeth… resulting in some sporadic meltdowns and sleepless nights. Her blood counts are predicted to fluctuate during this course, and should drop again, when she gets into the 4th course; Delayed Intensification… where they will hit it hard once more… and she will see the dreaded steroid again. : (
… here’s a good photo from her last spinal tap a couple of weeks ago:

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THANK YOU, THANK YOU, THANK YOU to Jamie Leachman, Teddy Sears and Tanner Campbell for spear heading the hugely successful fundraising effort for our family. Words cannot express our gratitude to EVERYONE that contributed… especially in the midst of theses wild economic conditions. [vote & buy American!] SO, THANK YOU. The bills associated with Rogan’s treatment are mounting fast, and what you all have done for us has most certainly lessened the pressure for one of our biggest expenditures!... organic Kale and Spinach smoothies now flowing like water! Rogan loved this one so much, that she let her whole face enjoy it… then she got sad that her hands were messy.

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It is wild to witness your child grow up so quickly before your eyes. She is learning and progressing so fast… and testing the boundaries every step of the way. I think she reached her terrible 2’s a little early. The social worker at clinic said that “now is not the time for harsh discipline and that studies have shown that it can have a long term effect on their psyche”. She also told us to put Rogan in a quite spot, walk away and count to 10 and take deep breaths… and “never to hit an immune compromised child”. Darn it… I guess Rogan’s regularly scheduled beatings will have to come to a stop. [joke] … put it this way, Rogan is hands-down the most spoiled kid on earth, and we are proud of it.

With her blood counts relatively high and in a safer zone this past month; we have been able to get her out for a few adventures and some all too healthy social interaction. We made the trek down to Southern Utah to see Papa and Grammers. She enjoyed extra full days on plush carpeted floors, tractor [bee beets] rides and nature walk-abouts.



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Rogan was even able to make an appearance at her cousins Avery & Talon’s house for a Halloween bash. Her and Coco went as Ninjas. She romped with her cousins, painted pumpkins [pund-kids] and had a laugh with the dogs.



Last week Nana took her to the pumpkin patch and she had a blast with all the ghosts and ghouls… she called them “guys”. Everyone got to pick a pumpkin to take home and she choose the scrawniest, most mangled gourd I’ve ever seen. I was scared of it when she brought it home. My friend said, “not to stifle her creativity”…

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Here’s a shot of Rogan manning a display mower on a recent trip to Home Depot. She yelled “bee beets” a dozen times... nearly had a stage 9 meltdown and her wish, was my command.

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Rogan disappeared for 2 minutes, the house went quite and she surfaced from the bathroom looking like this. I was able to snap this pic just after I had a mild heart attack and just before I sanitized her from head to toe.

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Rogan adores Coco and there is not an ounce of jealousy… well, maybe at 3 AM when whoever cries the hardest wins Mom.

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Thanks again to all who are thinking of us. We are forever grateful for the continued love and support.

12 comments:

Rachael Rose said...

I am so happy to see her smiling, standing up on her own, and playing outside... you are a family to love and your courage and strength is moving mountains for Rogan. I pray for the little bella all of the time and I am just so happy to see her happy. I miss you all.
x
Rach

Beth A said...

Amazing to see Rogan living the life of a normal toddler. She's so adorable!!! I'm glad you have been able to have this break with her. Its fun to see pictures of CoCo as well. You have beautiful girls. How lucky they are to have parents as strong and caring as you are. Your family is so precious.
Hugs & Kisses

ishybeanie said...

what cute little girls you have. I love the one with Rogan by the pumpkins. what a cutie. it is so nice to see her smile in the pictures.

Kristy said...

I'm so glad to see you guys are getting out a bit. Rogan and Coco are so cute together. I bet Rogan loves having a little buddy. I'm still waiting for that phone call. Keep me in mind if you need an extra hand.
Love, Aunt Kris

brooke said...

They couldn't be more precious! Oh how i hope this next series of treatments goes by quickly. She is such a little trooper!

SUZAN said...

She kills me with the "beet beets" What a cutie pie! Casey, I am still down with meeting you for yoga if you need a little time to relax... Just call me!

Megan said...
This comment has been removed by the author.
Megan said...

So fun to see the cute sisters in action! We're even more thrilled to see Rogan Go :)

Anonymous said...

Casey and Corey, your family is always in my thoughts. I would love to help in any way. Rogan is such a beautiful little girl and i can't wait to see her again!

much love,

Brittany Woodard

brooke said...

ps - its Elles favorite thing to watch movies of Rogan. She sits there giggling "She is sooo cute mama". And lets be honest, we all totally agree with her.
There has been one complaint... She tells me that the skateboarding one is not long enough and that Rogan would want to skate for longer (she doest quite get the whole picture of the video camera yet). Sending all our love!

Amy said...

Both your girls are adorable! CoCo is getting so big! I'm glad you get to get out and enjoy the fall weather a bit! I'm so happy to see that all is going as well as it can!
Love,
Jeff, Amy, Ethan and Mylie

lizardmama said...

Dear Casey and fam, Just a heads up that at the salon we are giving to charities in lieu of gifts to our clients this Christmas and thanks to Beth letting me know about the Go Rogan Foundation I am chosing you for my charity:)! I am so excited! So you will probably get donations from unfamiliar names but know every one will be sent with hopes and love!It was so good to see you and your family when you got your hair done and know that you're in my thoughts evryday!Say "hi" to everyone and I'll keep in touch! Love,
Kristi Baker