Tuesday, January 20, 2009

DELAYED INTENSIFICATION_week 5

Our star turned 2 on Sunday... and with the passing of my father Charles, a year ago Saturday... we spent the weekend in celebration of life. Nana lent some much needed back up and Case and I were able to spend a full day together... went snowboarding with the boys, reported back to feed Coco, went out to dinner, reported back to feed Coco, then went up town. Scary Uncle Jim (see Dr. Seuss's "Hop On Pop" for explanation) got us in to a fun Sundance party where we were mistaken for someone famous and treated like royalty until they figured out who we really were. But not a worry, as the fun had already been had. We toasted a drink to my Dad, enjoyed adult conversation and saw a few 1/2 famous cast members from Survivor.
Rogan felt great on her birthday and we went sledding and made GoRogan cupcakes.

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Coco havin' fun at Primary's. She is "shred ready" too!



Week 4 of this course was absolutely brutal. The chemo-cocktail from the first 3 weeks hit hard... she lost her hair again, didn't feel like moving or smiling all day and couldn't barely sleep at night. It is not fun watching her go through this.

"Be careful what you wish for". We had a week off from clinic, as scheduled with this course to allow her ANC to recover from the chemo... and Case and I felt uneasy about being away from her Docs for so long. THURSDAY, 1/15 can now go down as one of the few, "worst days of my life"... and I'm sure Case will second that. We were scheduled for a MONDAY, 1/12 clinic day, to start the next 1/2 of DELAYED INTENSIFICATION. Her Sunday CBC (complete blood count) came back with her ANC at ZERO. Yikes. (Please see the charts on the top right of the blog). So we were on the sidelines again... we took her to clinic on WEDNESDAY, 1/14 to assess a fairly aggressive rash and her ANC had spiked back up to 1,100! (That means she has very healthy marrow, that is producing the good cells). She needed to be above 1,000 to start and we were able to get an appointment Thursday at 1 PM. It was an LP (lumbar puncture, where she goes under anesthesia and they pull spinal fluid to biopsy it, and inject chemo into the spinal fluid). Still coming of the steroid induced raving appetite... going without food until 1 PM is NOT well received. Here are the girls waiting for her 1 PM LP:

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During the LP, whilst under anesthesia, Rogan had a "Lorengo spasm"... where her esophagus seized shut. They had to force air down her throat to keep it open and keep her breathing. This is the first time this has happened (she's had about 7 thus far) and she was NOT psyched. She woke up early, while still fairly high on the anesthesia and logged a good hour of crying and forcing the air back out of her stomach with Auntie Camie style belches. Her throat was harshed and she was famished and exhausted. She passed out on Mom during her chemo infusion. Coco was tired from shredding so hard and passed out too. Rogan's vitals cleared and we finally left at about 4:00 PM... and she slept the whole way home.

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When we got home she immediately requested her fail safe: beans & rice. The 2 IV chemos she had received were doozers, so we kept a close eye on her. She took a bite and we saw that she had the shakes. Her temp read 102.4 and we were GONE! (we were told that 101 is an "emergency" and to come to the hospital immediately) Once in the car, she was lethargic and non-responsive. Sundance had the out-bound traffic gridlocked and the situation became "high-stress" immediately. Case was in the back seat, on the phone with a nurse, trying to revive Rogan. I was driving and calling 911. I made the executive decision that I could get her to Primary's faster than an ambulance or a heli... hung up on 911 and drove like I never have before in my life. We got to Primary's in 1 piece and Uncle Jake was there to take Coco off our hands for a bit. Rogan was still running a fever and was now vomiting. Her heart rate was locked at 205 beats per minute (average for her age is 130). She asked for ice and wawa, but couldn't hold anything down. The little Tylenol that she was able to choke down did not phase the fever. They got her IV antibiotics and fluids... and we laid with her in the ER.

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Uncle Jake returned with Coco and some much needed pizza for us... (we forgot to eat all day too). Coco is a good kid. She's been to Primary's more than anywhere else, outside of her home. She goes along for the ride... and as long as she is fed, it is all good. Here she is in the ER:

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Rogan's fever stayed high for a few hours...then finally subsided when we got a room in the ICS (immune compromised system). We saw some old nurse friends from when she was diagnosed. She slept through the night, despite having her vitals checked every hour. All the IV fluids made her look pretty rough when she woke... but she felt progressively better throughout the day.

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The blood culture and test results ruled out several forms of influenza, or bacterial virus and they chalked it up to a reaction to the new chemos, plus the rough day. We were relieved... so was Rogan... and she took a spin on a tricycle in the hallway.

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Here's a shot post dressing change. We are pretty serious about it, to make sure she stays as sterile as possible. She is tough as nails... and barely cries.

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Rogan received a sweet "Box O' Aloha" for her birthday, from her Aunties in Hawaii. Here she is iChat'ing them. She was petrified of the stuffed horse... but then warmed up to him.
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Rogan loves to entertain:



With this course we are on a 4 day stretch of IV chemo. Her ANC is high now, but it is expected to drive her red blood and platelets down, and we can expect transfusions. (see the charts at the top right). Our wonderful home nurse, Audrey comes over to infuse it. Couch chemo:

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Crazy red animal gloves from Auntie Jess. She calls them "A-mo hans"!

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"That's Elmo's World!"

11 comments:

shannon said...

Rogan I love your song, but you might have got your Nana's voice. Darn it.

brooke said...

Holy smokes! You people are tough!! I am lying in bed crying my eyes out with that story! The little trooper! Videos aren't working on my computer this minute but Elle would be mad if I watched them without her anyway. We think about your little family many times a day. The big 2! Such a fun year of development:) And Casey, what in the world are you feeding Coco.. My kids need a whole lot of it!

Laura said...

It brings tears to my eyes every time I read this blog...what an amazing family to be able to go through so much and raise two amazing little girls. I think and pray for you all daily. I miss you all so much. love love love....La La

ishybeanie said...

What a scary day, sorry you had to go through that. You two are such amazing people to deal with this horrible thing with such great attitudes. Happy Birthday Rogan.

Anonymous said...

So relieved she is doing better and had a good Bday! You guys have incredible strength through these tough times! Happy Birthday Rogan!

The Calders

Katherine Foulger said...

Wow, what a week. I am so glad that she doesn't have a viral infection or anything else. You guys are unreal. I just wish that I lived closer and could help. I am amazed at the two of you and your strength, dedication, and love. Rogan and Coco are two blessed little girls to have you as parents. I love you all and think and pray for daily. I have also been thinking about Charles lately and when I do, the biggest smile comes to my face. I love that man. I'm just so glad that so much of who is was lives on in his children.

Beth said...

What a whirl wind of a week you've had. You are so tough to keep it all together. I know times are rough for all of you and pray that you will have more good days than bad this year. The girls are adorable as ever. Rogan is such a trooper to put up with all she is dealing with in her life. Happy Birthday Rogan!
Hugs and Kisses

KATE (QUINN) SCHROEDER said...

i think about you guys EVERY day. Wish so much that I were closer, so that I could know you, corey, and see those girlies. I keep telling kaia that she is going to be rogan's buddy-they are 1 month apart (happy bday rogan) and kaia could use her influence! She is shy but craves companionship! I don't even know how you managed that terrifying experience, and I know terrifying is a grand understatement. Love you all!

Aunt Kris said...

I loved the tea party with coco. Wouldn't It be nice to be able to go with the flow and have no worries like coco's expression indicates in the picture of her in her polka-dot pj's
I'm also sorry Rogan may have inherited grandma Shannon's voice and not my fine vocals : )
Love, Aunt Kris

Leslie said...

Wow. That's all I can think. What an amazingly tough little fighter (not to mention the flex you parent's have gained). I am so glad you guys are documenting this journey, so we can feel connected to what you are experiencing. My prayers are yours.

All the best,
Leslie Clark Hurst

Dianne Young Erwin said...

Wingy -

Van kissed rogan on the computer and wants her to know we are all thinking about you all! We pray for you all each night.....