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