MAINTENANCE!....really...

... BIG MILESTONE for Rogan last Thursday!  Her ANC finally recovered and we graduated into MAINTENANCE officially.  She had a 1 week delay because her ANC counts were too low.... due to the harsh chemo from DELAYED INTENSIFICATION.

.... not quite sure if it's physically possible to be more proud of someone. Thursday clinic she received an LP (lumbar puncture) and her IV chemo.  At home she is is on the steroid for the 1st five days of each month, an oral chemo every day and her anti-pneumonia.... a ton of work for Mama... but thus far, relatively easy on Rogan. 

She has a killer art kit from her Auntie in Philly and loves to color and paint.

Here's a roll of shots from the past 2 weeks:

Watching early AM cartoons (coons) and updating her FaceBook status via iPhone. Coco sampling her new-found motor skills on the "horse-camel-mirror-ring-rattle" device.

"sticker face Rogan". She was cracking herself up.  PARENTAL FYI: do not give a 2 year old stickers.

Rogan got a pretty Gerber Daisy from her Dada for Valentine's Day... walked around with it in the snow for 20 minutes... then proceeded to surgically remove each petal. "He loves me... he loves me...."

Clifford The Big Red Dog from her Auntie & Uncle in NYC:

Mom's shoes. "Mama hoos"!

Case was in the kitchen the other day.... and Rogan was making laps between her bedroom and our bedroom... a random item in hand each visit. She went to check on Coco, who was playing peacefully by herself (or so she thought) on our bed.... and unbeknownst to Casey, Rogan was slowly but surely, lovingly burying Coco... one random object at a time.

The Girls. Waiting for Dr. Druzgal at clinic. (she's the woMAN!)

Rogan lost her Great Grandmother, Anne Lutterloh Bynum Crawford, on Sunday. She would have been 96 fabulous years young on March 14th. Respect.

MAINTENANCE!

We're doing the blood count dance at the Crawford house!  Rogan's counts are bouncing back up and we got through DELAYED INTENSIFICATION only needing 1 transfusion of RED BLOOD, last Thursday.  Transfusions were to be expected, and standard operating procedure... but still plenty creepy and a full day affair.  We feel fortunate to have only needed 1 during this aggressive course.  Her PLATELETS dropped as well... she showed some advanced bruising... but never needed to be transfused.  (see the charts on the top right... for the blood count roller coaster).

Nothin' like some O Positive to kick things up a notch:

Even with low RED BLOOD, Rogan has plenty of energy... and it's all hands on deck trying to keep her contained during a 2.5 hour transfusion. She ate brocolli and spagetti... dance to Shark Tales... got a visit from the clinic Poodle (she was more scared than excited) and played with this ball ramp device with Coco... all while getting juiced up through her central line.







Rogan is obsessed with drawing right now. Drawing circles... waiting for blood:



Rogan actually enjoys visits from our home nurse Audrey!...  even blood draws! (on table) I think the "Elmo Visits the Doctor" movie has helped more than we had realized.



She even made it through her last dressing change without a tear... then said thank you Dada (tootoo Dada).

So psyched to have this crap out of our house. This chemo that she's been receiving the past few weeks comes complete with elbow length thick rubber gloves, full hazmat suit... and the below bio-hazard disposal container.
... but it's getting pumped directly into Rogan's blood stream?

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.









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!"

DELAYED INTENSIFICATION_week 3

OK.... so here is a great sequence Case captured from a few weeks ago [obviously, due to the lack of snow out the window]. Rogan is ready to spear someone in the face or neck region, as instructed by her Uncle Ryan. 

So, we started Week 3 of DELAYED INTENSIFICATION today. 

AT HOME: anti pnuemonia / stomach protectant / steroid [twice daily... and tastes awful, so it is a nightmare to administer]

AT CLINIC: IV through her central line: anti-nauesea / VINCRISTINE chemo / DOXORUBICIN chemo.

All that makes you feel like this. GaGa and BingBing are mandatory. Before she was diagnosed, they were restricted to bedtime and car rides only.

She hasn't been looking 100%.... or feeling the best [but it is hard to differentiate a ROID rage from a terrible two's meltdown]. At clinic this morning her CBC [complete blood count] came back with her ANC [bacteria / viral infection fighting white blood cells] dangerously low at a mere 100. See the ANC chart link at the top right... to see where Rogan is VS. where she should be. So, we are back on heightened red alert quarantine mode... doing our best to keep her body and central line clean preventing any bacterial infection... and doing our best to keep her from getting a cold. I wash my hands after each time I shake someone's hand at work and have pump hand sanitizer in the cup holder of my car. Please send Rogan all your positive vibes and help keep us out of the hospital! It's not the end of the world if she does get sick, and we have to go... but we'd rather not.

Here I am with Rogan and Dr Phillip Barnett at clinic last week. He is THE MAN. Can you tell which one of us cuts his own hair? Yikes.

Here is the whole fam. Rogan is saying CHEEEEEESE! and Coco is thinking about her next meal.

While her counts were up last week we made it to the family Christmas party at Papa and Grammer's. Rogan saw her cousins for the first time in a long while... had a little social anxiety, but still had a blast.

Papa and Grammer then made the trip to Park City to spread good cheer.

A very special thanks to our Kamas connection for the Christmas Eve carol.... sorry that we were in our skivies. That meant the world and Rogan thought it was cute and funny. Anything interesting that makes her smile or laugh is "cute and funny". We all cried when you left. Thank you.

The Christmas bomb went off at our house early... lasted all day... and the shrapnel remained for 48 hours.

The girls wore matching PJ's.... and Rogan had an amazing day. Out the window is about 10 minutes after the latest shoveling!

Here is Rogan jamming to her iPod. We bought this, loaded it with select Reggae and good inspiration for my father, when he was in the hospital. I haven't touched it or altered it's contents since then. It is now hers. Casey framed a old pic of him for above her change table... a cool grainy, old black & white of him on a tricycle when he was about Rogan's age. You can ask her "where's Papa" and she'll say "umrighder" [umm right there] and point.

October, 2007:

April, 2003:

I hate cancer. Here is some history:

The word cancer came from the father of medicine, Hippocrates, a Greek physician (460-370 B.C.), considered the "Father of Medicine." Hippocrates used the Greek words, carcinos and carcinoma to describe tumors, thus calling cancer "karkinos." The Greek terms actually were words to describe a crab, which Hippocrates thought a tumor resembled. Although Hippocrates may have named "Cancer," he was certainly not the first to discover the disease. The history of cancer actually begins much earlier. Cancer (medical term: malignant neoplasm) is a class of diseases in which a group of cells display uncontrolled growth (division beyond the normal limits), invasion (intrusion on and destruction of adjacent tissues), and sometimes metastasis (spread to other locations in the body via lymph or blood). These three malignant properties of cancers differentiate them from benign tumors, which are self-limited, do not invade or metastasize. Most cancers form a tumor but some, like leukemia, do not. The branch of medicine concerned with the study, diagnosis, treatment, and prevention of cancer is oncology.

DELAYED INTENSIFICATION_day 5

We started DELAYED INTENSIFICATION on Monday and it is a whopper.  2 different IV chemo's once a week  //  the steroid twice daily [5mg, where she was only getting 2mg back in Aug] for 7 days on, 7 days off  //  a stomach protectant [for the steroid]  //  anti PCP pneumonia twice daily Mon & Tues.  //  and a peg shot that was administered today.  This cycle is 8 weeks long.  

Obviously Monday was a big one and she has felt rough ever since.  Nauseous and has barely eaten... random bouts of roid rage... and plenty tired.  She has been sleeping through the night 70% of the time though... which is good for everyone. [scratch that for now... she was up every hour last night]. She barfed on the way down the canyon this AM en route to our 8:30 clinic and we had to pull over in the middle of a snow storm on the exit ramp.  All hands on deck for a rapid roadside clean up... and the whole fam rolled into clinic late, smelling awesome.

She saw Santa but wasn't impressed.  His elf gave her a bear and she mustered a "bye-bye".  She scored another cool hat off the clinic hat tree... took down some detailed notes regarding her blood counts... then received her PEG shot.  

Rogan's thorough notes helped me put this together tonight.  A look at how her blood counts have fluctuated since her 8/2/2008 diagnosis.  Wow.

Here is a shot from Monday's clinic... sad that this is one her favorite things to do.  If you come to our house [100% healthy and sterile] you are guaranteed a free check up from Rogan MD.

Here are the girls.  Rogan loves strawberries.. she calls them "gomm bees" [see the post from 9/20... Strawberries helped us get her walking again!]

Rogan likes to throw Elmo, Cookie and Coco in her stroller.

A couple minutes alone and Rogan had gnawed through a few crayons.  Yikes.

Rogan picked out our Christmas tree.  We decorated it with pics of our extended family, as we will be quarantined again by then and will not be able to see them.  She loves to re-arrange the ornaments daily.

She likes to comb her hair... it's growing back a little... but will get wiped out again with start of the steroid.

And that is it for now!  Thanks for reading and for your continued support.  This will be a tough 8 weeks and we are staying hopeful that Rogan continues to respond accordingly and we only have to go to Primary's for our scheduled clinic days.  Thanks for the love and positivity.  //  Crawford

DELAYED INTENSIFICATION... here we come!

Rogan graduated from INTERIM MAINTENANCE this past Tuesday, 11/25! We had a home nurse draw a CBC (Complete Blood Count) on Monday. Again, we were expecting her white blood count to be too low to support the next dose of chemo... but they came back just high enough once again!... and she was granted clearance for Tuesday's chemo infusion. That was the last clinic visit for this course of chemo... and she starts DELAYED INTENSIFICATION on 12/11.  She will receive a back poke to test and treat the spinal fluid... receive IV chemo and get prescriptions for the pills to take at home... not sure what the "chemo cocktail" will be exactly... we are still taking things 1 week at a time. It will be similar to her 1st month of INDUCTION and will definitely include the steroid. It is an 8 week cycle.

It will be rough as... but we are ready. The different courses of treatment are coordinated to kill the Cancer at all stages of growth. Example: the steroid in INDUCTION and DELAYED INTENSIFICATION; DEXAMETHASONE kills the young, quick multiplying cells. (Hair cells are quick-multiplying... that's why it falls out.) METHOTREXATE, that she has received this course, via IV, kills the older, more mature cells. There are no cells growing in her marrow, or traceable in her peripheral blood or spinal fluid... but they continue the treatments to make sure they are not missing 1 or 2 cells hiding out somewhere and maintain the 90% cure rate... meaning we complete the 2.5 year treatment, she receives a clean bill of health, and it never shows up again.

Rogan made her very first piece of art at clinic on Tuesday. A collage of glue and feathers. She was focused.

Then she got wild and pulled them all out at once and made a mess.

Thank you to Primary Children's Hospital and the wonders of modern medicine. It is wild to look back to August... Rogan had so much cancer in her bones that it had crowded out the marrow to the point that it was prohibiting blood cell production and causing enough pain that she couldn't even walk. 

... a few months later and she can dance! One of Rogan's first loves: dancing to snowboard movies.

Yes, those are pants over her footed jammies... [I dressed her that morning.]

... and yes, I will be trying out as a puppeteer on Sesame Street next year. Whatch your back Kevin Clash!