Tuesday, January 20, 2009


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.



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:


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.


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.


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:


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.


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.


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.


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.

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:


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


"That's Elmo's World!"