Monday, December 29, 2008


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.

Thursday, December 18, 2008


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

Sunday, November 30, 2008


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!

Picture 7

Sunday, November 23, 2008

THANK YOU so much to everyone for the tremendous support. All of your prayers, thoughts, bloggin’ etc... let’s us know how many people love us and gives us all tremendous strength. We are forever working to stay uplifted... suppressing the harsh reality that we are landlocked and only 4 months in to a 2.5 year treatment. 2.5 years of flushing her line each night and changing her dressing twice a week [she now does it without crying... and we can get it done with only 2 people on deck.] The constant anxiety that our baby has a life threatening illness... that something could happen to her line... or that she could get a cold and we wind up back in the hospital. The frustration that she is too sweet & young to have to deal with this... and just missing her hair... we were squabbling about cutting it or not the week before she was diagnosed. Thank you for the love and for keeping us on track.

Thank you SO much to Marianne and Bryant Foulger, and their family for establishing the Go Rogan Foundation. The overwhelming response and the huge contributions from everyone is a huge help to us and a relief on the mounting medical bills.

Another MEGA thanks again to the boys for their wildly successful Whole Foods fund-raiser. Jamie, Teddy, Tanner and EVERYONE that contributed... a HUGE burden off our shoulders. Casey is healing Rogan with food, dark leafy green smoothies flowing like water.

Massive thanks to our fine friend at Vans shoes for the coolest gift! Rogan was psyched. She loves Elmo [A-mo] and loves shoes [Hoos]... so the look of stoke and disbelief when she opened the box and saw her brand new “A-mo Hoos” was priceless. I wasn’t able to capture the initial shock... but....


She’s also extra excited about her new Elmo T. She had a stage 9 meltdown when she spilled yogurt on his face and couldn’t clean it off by herself.


Rogan has been charging through INTERIM MAINTENANCE without a hitch. Again, she has been receiving 2 different IV chemo drugs every 10 days. Each visit, they are ramping up the doseage... if her blood counts are sufficient. No drugs orally, at home... save for the Pnuemonia preventative twice a day each Mon & Tues.

We were expecting Rogan’s white cell count to be too low last clinic... but they made the cut and she received her 2 chemo’s IV. She also received a spinal tap, where they test and treat the spinal fluid. She was a little more sick this time... feeling nauseas and being more tired...but for the most part, felt well.

Her walking has improved significantly and she seams to be at about 85 or 90%. Imagine not walking for nearly 2 months!

I thought it would be good for her to get spinning on a bike... and we bought Rogan her very first ride.


Here is Rogan in the waiting room at clinic. She picked this cool hat from the Clinic Hat Tree and then gave it to Dad.


Rogan loves to sport her TuTu and dance in the living room.


...just like her Dad, Rogan likes to walk around the house totally nude, in only her snow boots and talk on the phone with her Aunties in Hawaii. [That is Glad Press n Seal on the line... to waterproof it for bath time.]


We had great weather a few weeks ago. Rogan logged her official 1st shift in the cage. She got lit up... but that’s fine, because she won’t be playing Goalie anyway.


Here is Rogan and Coco’s school picture. We have really been laying into them about their grades.


Here is bath time & book time. Yes, Coco is enormous... and yes she is only 2.5 months old. Breastmilk. If I incorporate it into my diet and start hitting the gym regularly, I'd look like I was sculpted from the hands of Zues. [thx Ghobud]


So Rogan was watching Little Mermaid and kept laughing at us... scrunching her nose and saying “nose” “nose”. We thought it was cute that she saw something on the TV and was repeating it.

Casey goes to change her diaper and yells for me when she sees a green mass up her right nostril! We thought it was some type of weird discharge associated with her illness. After closer analysis we determine that it is a pea!... and it was WAY up there! I thought “oh heck no... we are not going to the hospital for a pea up her nose, after all this”. We somehow convinced our 22 month old kid to eject the pea from her nose by holding the other nostril closed and blowing through her nose. What!? But the tale doesn’t end there!... a closer look and there is ANOTHER pea in there!... right behind the 1st one! Once again, she was able to eject the pea and we all had a good laugh. Here is Rogan re-counting the story at the dinner table:

Rogan's red blood & platelets are good.... so her energy levels are high and she is feeling well. Her white blood is getting low... so we are back inside on level 10 quarantine... keeping her from getting sick and bracing for the impact of "Delayed Intensification". 

Thanks again to all who read this and support us. Much love.

P.S. I am now committing to post shorter & more frequently. We are scheduled for a CBC [complete blood count] draw this morning and a clinic day tomorrow.... stand by.

Monday, October 20, 2008

Interim Maintenance!

Again, sorry for the delay… Rogan has been feeling so well that we have been spending every free moment with her and enjoying it to it’s fullest. "Filling the canteen" so to speak, before she is scheduled to get the aggressive chemo again and predicted to get sick again. She is back walking and able to get in trouble again. She has so much fun and is so wild at times, that Mom thinks she may have eaten a few coffee beans that have fallen on the floor. She began her 3rd course of chemotherapy this past Monday, 10/13. It is called Interim Maintenance, and it will last 8 weeks.
_She will receive 2 different chemo drugs intravenously on each clinic visit and no chemo drugs orally, from home! [there’s no reasoning with her to eat bitter chemo pills lightly sprinkled over her delicious vanilla yogurt; regardless of the presentation.] I believe that they will be ramping up the IV doses on each clinic day, based on the side effects she experiences and if her blood counts can maintain a sufficient level.
_she will not need to get the spinal tap until 3 weeks from now
_bone marrow aspirate will not be until 3 weeks, as well.
Some slight side effects from Monday’s clinic are now manifesting, combined with some fresh teeth… resulting in some sporadic meltdowns and sleepless nights. Her blood counts are predicted to fluctuate during this course, and should drop again, when she gets into the 4th course; Delayed Intensification… where they will hit it hard once more… and she will see the dreaded steroid again. : (
… here’s a good photo from her last spinal tap a couple of weeks ago:


THANK YOU, THANK YOU, THANK YOU to Jamie Leachman, Teddy Sears and Tanner Campbell for spear heading the hugely successful fundraising effort for our family. Words cannot express our gratitude to EVERYONE that contributed… especially in the midst of theses wild economic conditions. [vote & buy American!] SO, THANK YOU. The bills associated with Rogan’s treatment are mounting fast, and what you all have done for us has most certainly lessened the pressure for one of our biggest expenditures!... organic Kale and Spinach smoothies now flowing like water! Rogan loved this one so much, that she let her whole face enjoy it… then she got sad that her hands were messy.


It is wild to witness your child grow up so quickly before your eyes. She is learning and progressing so fast… and testing the boundaries every step of the way. I think she reached her terrible 2’s a little early. The social worker at clinic said that “now is not the time for harsh discipline and that studies have shown that it can have a long term effect on their psyche”. She also told us to put Rogan in a quite spot, walk away and count to 10 and take deep breaths… and “never to hit an immune compromised child”. Darn it… I guess Rogan’s regularly scheduled beatings will have to come to a stop. [joke] … put it this way, Rogan is hands-down the most spoiled kid on earth, and we are proud of it.

With her blood counts relatively high and in a safer zone this past month; we have been able to get her out for a few adventures and some all too healthy social interaction. We made the trek down to Southern Utah to see Papa and Grammers. She enjoyed extra full days on plush carpeted floors, tractor [bee beets] rides and nature walk-abouts.


Rogan was even able to make an appearance at her cousins Avery & Talon’s house for a Halloween bash. Her and Coco went as Ninjas. She romped with her cousins, painted pumpkins [pund-kids] and had a laugh with the dogs.

Last week Nana took her to the pumpkin patch and she had a blast with all the ghosts and ghouls… she called them “guys”. Everyone got to pick a pumpkin to take home and she choose the scrawniest, most mangled gourd I’ve ever seen. I was scared of it when she brought it home. My friend said, “not to stifle her creativity”…


Here’s a shot of Rogan manning a display mower on a recent trip to Home Depot. She yelled “bee beets” a dozen times... nearly had a stage 9 meltdown and her wish, was my command.


Rogan disappeared for 2 minutes, the house went quite and she surfaced from the bathroom looking like this. I was able to snap this pic just after I had a mild heart attack and just before I sanitized her from head to toe.


Rogan adores Coco and there is not an ounce of jealousy… well, maybe at 3 AM when whoever cries the hardest wins Mom.


Thanks again to all who are thinking of us. We are forever grateful for the continued love and support.

Saturday, September 20, 2008


...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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