Saturday, September 20, 2008

CONSOLIDATION!

...apologies for the delay. Rogan is back!...and we have been loving it. She completed her 1st course of chemo therapy on 9/1…and since has had a 2 week break off all chemo drugs, particularly the steroid [which was causing all the grim side effects]. Within 24 hours off the steroid, she began to come back to life…played by her self, smiled and finally laughed... for the first time in 3 weeks! It is wildly unnatural and surreal for your own child, of a mere 19 months to go so long without a good laugh… and equally emotional to have her return to her self… throw a new born in the mix and the emotions at the Crawford house are off the charts.

We are very relieved that she has been responding so well to the treatment. It is hard to believe that at the start of August she had so much Cancer in her bones that she couldn’t walk, or produce her own blood cells. Regardless of how well she is responding she will still run the entire 2.5 year treatment, in case her body begins to re-generate the bad cells again, or if there happens to be 1 or 2 cells hiding out some where. Whatever it takes to make sure this goes away and stays away!

At clinic day__9/8 her ANC count [bacteria and virus fighting white cells] were not high enough to begin the second course of chemo… so she got an additional week off; which was fine… don’t get me wrong, we are terribly anxious to get these 2.5 years of treatment behind us. At clinic this Monday, 9/15, her ANC was high enough and we were able to start her second course, CONSOLIDATION. This course is focused on the central nervous system, where she will be receiving weekly spinal taps to test and treat the spinal fluid… continue to receive the IV chemo each Monday via her central line, and receive 1 other chemo drug orally, at home each day. Below is a sequence of her from this Monday, post opp… again they put her under with anesthesia via her central line [we call it her Toobies] and administer the spinal tap. She also got a dressing change. She woke slightly groggy, had a quick cry, showed everyone her Toobies, ate a Numuna… and felt better.

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…now that Rogan can stand again and get outside a bit, Mama and auntie Tam Tam have been playing dress up. Here she is in Roxy

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I have been forcing the premature transition from A-mo [Elmo] to Surf’s Up and big kid movies. With Rogan’s new hair-doo, I’ve noticed a striking resemblance between her and the baby penguins.

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Rogan is just now starting to walk again… her legs are small and weak from having gone so long without use… and she’s put on 10+ lbs… so she is very cautious. It started with her pushing her stroller, and we were able to get her to take a few solo steps [but I had to tempt her with food]





She loves A-mo and Cookie and taking them for walks with Auntie.

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The city is replacing all the gas and water lines in our neighborhood, so they are trenching 20’ holes and piling up gravel everywhere. Our street looks like downtown Beirut… but there are plenty of tractors for Rogan’s enjoyment.

One worker made the grave mistake of honking for her and now she is hooked. She calls them bee beets and is obsessed with just sitting in her stroller and staring at them go to work. She asks for them at 7 AM… and had a complete meltdown when we came home late one night and I wouldn’t take her to say good night to them. I lost that battle and was forced to tour Norfolk Avenue in the pitch black through maze of open man-holes and 20’ excavation sites. But we said good night to all 3 and that was all she needed. I will ask our doctor tomorrow if OCD is a common side effect of the treatment.

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Here is Rogan in her stroller, singing a Little Mermaid song, playing hide n seek and doing “Beetle face”. I don’t now how “Beetle face” happened, but she can now do a Crab, Cat, Cow, Owl, Snake, Fish… and we are working on Peacock and Monkey.

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Rogan’s immune system is still down…but not in the extra red zone….so we have been able to get out a bit [still keeping her away from other people, especially kids and dogs] This is her first skateboard session at the Park City park. I bought her first lacrosse stick last night and we are shopping for snow skis for her today!

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15 comments:

Astle family said...

She is looking so good!! I am so happy for you guys and her progress! that is the happy girl I know!

Anonymous said...

It is fun to see such cute pictures and such positive news! It is great to hear she is back to being a happy girl too! That has to be so wonderful for you all! I love to read this blog and get your updates!
Love,
Andrea, Matt, and girls

Kristy said...

I"m so glad to see the progress, and that you are able to get out a little. It"s nice of Park City to provide some entertainment.
You guys are so awesome to keep us informed. What a lucky little girl to have such great parents.
Love, Aunt Kris

SUZAN said...

My eyes are filled with tears after watching the videos of her walking. It's a wonderful thing to see your child take their first steps, but it I can't imaging the emotion of watching her take her first steps again after all that she has been through. I am so so SO happy for you all. How wonderful that she can now get out and enjoy the outdoors. I am sure you all love getting out! And Auntie Tam Tam? Does that mean that Kami is back? (sorry if I spelled her name wrong) I have been thinking of you guys a ton and I will give Casey a call soon!
Luv, Susan

Dianne Young Erwin said...

She Looks so beautiful!!!
I am thrilled to see the progress she has made and so proud of you all. Keep taking those steps forward Rogan we are cheering you on every day.
More blessings to come.
xoxoxo Dianne, Conner & Van!

cielo said...

yipee!

I love these updates... and the sweet picture of Rogan in her stroller and shades!

big hugs and happy wishes,
cielo

The Earl of Grey said...

Way to go Mogues! we love it and are wishing you many more steps in the coming days.
love,
brian and jess

ishybeanie said...

she looks like she is doing great!! that is so good you hear. Keep up the good work.

Amy said...

Way to go Rogan! I love that she is walking again. She is so darn cute. I especially loved the dress-up picture! I'm glad she is doing so well and that you guys get to go out a bit before the weather turns wintery. Congrats on your new addition as well. (I don't think I have commented yet) She is absolutely adorable!

Jeff, Amy, Ethan and Mylie Frazier

Lara said...

Ran across this blog. She is beautiful. All my prayers to you!!

Beth said...

As Suzan said, I too got tears of joy as I watched Rogan walk in the videos. How exciting!! I loved the video of her asking for "more" strawberries. She's a doll. All my love to all of you
Grandma Beth

Katherine Foulger said...

The Foulger Family was so excited to see new pictures of Rogan. SHE IS WALKING!!!! That video of her walking for food is priceless. We were so thrilled to see her happy little face again. We LOVE the one of her standing up all dressed in Roxy. She is a babe! We love and miss you all!

Rachael Rose said...

Yay! I am so happy to see her walking again! I had tears in my eyes when I could hear you corey, when you say "yah bud, you did it" when she walked to get the berry. I miss you all so much. I really hope I will get to see you some time soon.
Be well fam,
Rach

Kristi Baker said...

As I sit here crying tears of every emotion I have ever felt... esp. as a mom... I can't even imagine what you all have been going through! Casey, I love you and your family so much and wish I could help and make everything better! I have you down I believe Oct. 9th for your hair and I'm sure you have lots going on (ha ha!) I want to gift your hair to you as a congrats on beautiful Coco and of course beautiful Rogan and her awsome progress!!!!! I understand if you can't make next week but know the gift stands for as long as needed!! You two as parents are an inspiration to all of us...I just don't have the words to express my respect and ah to you! PLEASE let me know ANYTHING I can do for you two and know you are in my thoughts everyday!love you, Kristi Baker

KATE (QUINN) SCHROEDER said...

so happy 4 u guys!