Friday, August 15, 2008


...so we have been "out-patient" since Thursday evening 8/7.  The more days we get away from the hospital and her IV chemo, the better she does.  Above is a sequence of her taken on Sunday 8/10...listening to dancehall Reggae w/ Dad...enjoying it, and dancing...plus an interview with Dad, Mom and Auntie CamCam regarding teeth brushing, Sesame Street and her binky... [which we call "JaJa"...and Rogan calls "GaGa"].

Home is much more enjoyable than our hospital room and it has been nice to take a break from "Elmo in Grouchland" [except for the opening scene....a montage of Elmo's ode to his blanket....which is amazing].  We have a wonderful home-nurse named Lynn, who is on-call on an as-needed basis.  She helped us change her dressing Friday night....which was just as rugged as the first time.  Rogan was only sick once and the most stressful week is now over.

On Monday 8/11 we were back in the hospital at 8 AM for our scheduled "Clinic Day"...another morning spent NPO [fasting]....which is always tough for Rogan.  We had blood drawn and then went down stairs for her procedure....where she is taken into the surgery room and given anesthesia through her central line, immediately falls asleep [scary] and is handed off to the doctors.  Over the next 30 minutes she had the following work done:

1.) bone marrow aspirate

2.) back poke [test and treat spinal fluid]

3.) change central line dressing [thank heavens!....better you than me, doc.]

She woke up groggy and angry...yelling for a baba [bottle] and a numana [banana].  She proceeded to crush an entire large banana in 20 seconds and wash it down with a pint of milk, Cheerios and cranberries. [one of the drugs she is receiving twice a day is a steroid...that attacks the "quick-multiplying" Leukemic cells...and also makes her ravenously hungry] 

After recovery, we were back up stairs where Rogan received her IV chemo via her central line. Her blood draw showed that she was low on platelets, so she received 1 bag via IV. We did not leave the hospital until 2:30 PM.

Home since Monday afternoon 8/11....the greatest challenge has been administering her combination of 4 different drugs orally. Despite being ravenously hungry and eating like her Dad.... her "distinguished palette" can pick it up in most everything we have tried to disguise it in....and it has now become a full-time job in itself. Aside from Sesame Street in her high chair and staring at the Tractor on our street...pretty much everything else seams to be a nuisance to her.... including bath time!...which was once a favorite. The doctors have warned us of this inevitable "roid rage".

…wanting to keep an extra close eye on her, she has now joined us in bed...which Dad has aggressively spent 19 months attempting to avoid at all costs. She likes to sleep completely perpendicular to us...usually her sweaty head in Dad's neck, swatting my face every time I move and her heals in Mom's belly, kicking like Bruce Lee. At approx 3 AM each night she wakes up and goes on another “roid induced” eating binge. 2 nights ago she woke up and ate 2 pieces of toast with jam and a whole milk bottle….last night she ate 2 entire bananas and a whole milk bottle.

GREAT NEWS: On Thursday 8/14 we got a call back from her doctor on the results of Monday’s bone marrow aspirate….it showed no production of Leukemic cells, which is the best news possible for her Day 7 benchmark and also puts her in the highest “cure rate” possible.

WALKING: It has now been approximately 19 days that Rogan has refused to walk.  Again, our doctors attribute that to the Leukemic cells in the bone marrow, “crowding out” the space and creating “bone pain”. 2 bone marrow aspirates and 2 spinal taps only 7 days apart can’t help either. We hope that the chemo will knock the Cancer back enough in the coming week to where the pain is relieved and she takes her first steps again. Before she got sick she was almost running…and Mom & Dad had taught her to kick & trap a soccer ball and do a “Sumo step”….[where if you say “Sumo…..step!” she will balance on 1 leg, then slam the other down and laugh.] Her hair is beginning to thin and fall out a bit…at approximately the same rate as Dad’s…so we may be shaving our heads at about the same time.

NEW BABY: Rogan’s new brother or sister is due 8/30. Mom is feeling great and, I won’t go in to specifics, but things are progressing as scheduled and we are looking forward to the newbie. A full moon and a cold front are on the horizon…so stay tuned. The Canyon is closed for a few nights this week...so we are hoping to avoid going into labor on one of those nights and being forced to off-road it over Guardsman’s Pass. If you are reading this, please help us “manifest” a delivery when the Canyon is open and my sister is still in town.

THANK YOU: …to all of our wonderful family, friends, neighbors and co-workers for all the positive vibrations, prayers, love and support. We could not get through this without all that you have done for us and are eternally grateful. Much love & respect. 

23 comments:

SUZAN said...

I might have to pick up Elmo in Grouchland. That is the one movie we don't have! I have been waiting for news and it sounds like good news, so that is GREAT! Keep up the updates, and give Rogan a squeeze from Auntie Susan. Hang in there Casey... I didn't even think about the canyon closure, Guardsmans Pass in labor sounds like a rough ride!
xoxo

dnap said...

We are thinking about you guys all the time. Keep hanging in.

ps- 80 is only closed eastbound this weekend so if you must go into labor, you'll be fine. This should take off the pressure. You wont be able to come home til sunday tho.

Anonymous said...

Rogan,

Soon you'll be back out in your little garden, playing and trying to eat all the rocks you want. I'm praying for you Rogan. You got it!!

Much love,

Paul Davis

Beth said...

Fun to see the video of Rogan in action. She's as adorable as ever. The news reports are so very encouraging. You have all been in my thoughts continually. If you need an extra pair of cuddling arms at anytime mine are always available. I'd love to help in any way. Take Care. GO ROGAN! Hugs & Kisses.
Grandma Beth

Katherine Foulger said...

Crawfords,

Awesome news!!! Thanks for the update. We are so thrilled to hear that things are going well. I am still sorry for losing her favorite DVD - Melanie told me that that it a mother's worst nightmare and that I have no idea what I've done. I won't sleep, eat, or swim until I have replaced it. Wish me luck.

I'm actually hoping that Camie doesn't get this job and that I can't find one in D.C and then we can live together in Park City and be the nannies. HEAVEN!!!! I promise not to get sick.

I love you all!

Kath

barbchuck said...

Thank you for taking the time out of your busy lives to write this update. It sounds as if the news is good. Hopefully, Rogan will be back to practicing her soccer kicks soon! I especially loved the videos. She is just too cute! I am continuing to send you a heavy dose of positive thoughts.

WC said...

Thanks for the update you guys! We love hearing how things are going and they sound positive!

We're still thinking about you guys and are STILL willing to help.

It sounds like Rogan and Michael Phelps have something in common with their appetites :-) I wonder what that says about Phelps?

Phelps Diet Link

Brittany Archibald said...

First of all, I was so sorry to hear about what Rogan and the both of you have been going through these last few weeks. I can't imagine what that must feel like. We have been thinking so much about your family. I was so glad to read some better news on your latest postings!. Sounds like it's getting better. Yea! We look forward to hearing about the arrival of baby #2. We miss you guys and hope that all will be better soon! Much love! --jordan and brittany

Astle family said...

I'm so glad that there is some good news! we are always think of you guys. thanks for keeping us up to date,

KATE (QUINN) SCHROEDER said...

What a sweetheart-I didn't know she was talking so much! Thanks for the details and for keeping us all informed...I love her even though I have yet to meet her: because she's YOURS and you guys are wonderful! I think she and Kai'a will be great friends/surfing summer buddies :)
love katlyn

Fielding said...

Corey and Casey,

I just heard from my mom...I hope you know that the whole Lewis clan considers y'all family. Please call on us. We love y'all...and Rogan stole my heart when I met her last winter. I'm not sure how one becomes an "Auntie" but I'd be psyched to fill out the application and wait my turn in line.

Love to y'all...lots of love flying your way from Durham.

I'll keep checking in on the site.

-Fielding

Amy said...

Hey guys! I just heard about your blog. What a great way to keep in touch without having to repeat info a thousand times! It looks like you have about that many people, atleast, thinking about you and sending you positive vibrations! Well, count us as one of the many! We are thinking about you guys constantly and there have been many prayers and will be many more coming from our little home. We love you guys so much and would love to help out in any way possible! Go Rogan! You will beat this!

Love,
Jeff, Amy, Ethan, and Mylie Frazier

Tyler said...

Mariah Toryn and I are sending full love and support. Let me know if we can pick up any groceries for you. We know you are on Level 10 quarantine, but we would be happy to make a delivery and help any way we can.

All of our Love.

Tiranan Bayley said...

Hello Crawford family! Please know that the Bayley home is sending all the good vibrations we can from California! Thank you for sharing your story! You are in our thoughts!

LOVE - Tiranan, Brett, Valentine and Coalie.

SUZAN said...

Hi guys! I posted something for Rogan on my blog so have her check it out. Also, if you haven't looked at Rachels blog recently you should read her latest post. I found it very inspirational and inspiring. Love you guys!

ishybeanie said...

what a cute little girl you have, way to be strong, we know you can beat this thing.

Rachael Rose said...

Rogan looks so sweet in the video where she is trying to brush her teeth... I am happy to see her little face in action. Good luck with the newbie and I will keep my fingers crossed that the path will stay open so you can avoid a crazy off roading experience. Keep taking care family.
x
Rach

brooke said...

First off, you both are awesome parents to find this so quickly! She is a doll! Those pictures are strait out of a magazine and I am so impressed she can brush her own teeth. Our prayers are with you and know that we are constantly thinking of you. I was so excited to read about your good news:) We will be praying for her to be walking soon.

Andrea Calder said...

It is so wonderful that there is such positive things to focus on and such great news to hear about her progress! Matt and I are thinking of you guys daily and getting updates from your dad Casey.

Love to you all!
Andrea, Matt and girls

Sallie said...

C, C & R-

Just wanted to let you know that you all are in my heart and mind all the time. I am off to an art gathering (BM) and I will be sure to spend time in the temple saying many prayers for you all. I love you guys and am sending many good safe and loving vibrations. Love Sallie

Jo said...

Hi Crawfords! My heart sank when I heard the news about Rogan, I'm so happy to hear the latest test results! She is such a strong little girl.
Please know that you're in our thoughts and we're sending our positive vibes your way. Go Rogan! Get well soon!
Lots of love, Jo Chris & Fallon

Kathy DiMartino said...

Kerri had told us so much about Rogan and what wonderful parents you are. We went through something similar with our son, Kris 15 years ago and he's doing great now. We just wanted to let you know that we're praying for you. It looks like you have a huge support system - and a lot of loving friends. Give Aunt Camie a hug for us! I love the toothbrushing video!!
Kathy & Kevin DiMartino

Meadow said...

We have been sending positive thoughts and prayers ever since we heard the news. I am so happy to hear the recent good news. Thank you for becoming a "blogger" and keeping us all updated on Rogan's progress. GO ROGAN! :)

All our love,

Meadow and Marcus