Go Rogan!

NO MO CHEMO!

2011-01-19T21:13:00.000-08:00

Sincere apologies for the lack of posts. Selfishly, for me, this blog has been a fantastic emotional outlet since diagnosis… but for some strange reason, after Rogan graduated from treatment, it felt really good NOT to write. To live without Cancer in our life… entirely.

"Normal"… disease free living. Ahhhh….

On September 30th 2010, Rogan received her final IV Chemo & Lumbar puncture.

The crew on hand of docs & nurses surprised her with a graduation goodie bag:

30 days later was her final oral chemo. It was evening time & Casey was at the store. I set up shop; mush with bananas, milk, water & and the daily dose / array of chemo pills… approximately 5 or 6. Split emotions: joyous relief VS disgust. I don't even like to take Advil. I took a picture of the pills, cried, gave them to Rogan, explained to her what this meant & took a few pictures & videos of her:

The Make-A-Wish Foundation helped us get to Maui to celebrate Rogan's life. Friends & family made the trip as well & we pulled off the vacation of a lifetime. Thank you.

PICS HERE!

Rogan turned 4 yesterday. She is amazing. We are truly blessed to be surrounded by family & friends that supported us through this… and celebrate every day. RESPECT.

Last Summer, our good friend Jerry Ricciotti, along with his brother Danny & cousin Joe; road bicycles across the nation to raise awareness for Rogan's fight and to raise funds to assist us with her medical bills. Forever grateful.

Jerry came to visit us last week... delivered Elmo & Cookie Monster kits for the gals and thankfully shot some priceless photos & video. What a hero.

Steven

2010-08-18T10:16:00.000-07:00

2nd week for Maui is booked! If you are thinking about joining us… this is where we are staying 11/7 - 11/14. http://www.vrbo.com/58187 Puamana, Lahaina. On the water…kid-friendly beach... and still close to town. Should be a blast.

… and 11/1 - 11/7 we are staying at the Hyatt. "Crawford" reservation. CLICK HERE!

… took Rogan on a date last week. It was pretty special to have her all to ourselves. Steven came too. Steven is one of Rogan's children. Steven is a female Koala bear who occasionally bites people. Rogan told us at dinner that Steven listened to her Mom yesterday and didn't bite… so she got a "listening star" for her "star chart". Oh.

Rogan likes Banksy:

DUCKY DERBY

2010-08-04T09:34:00.000-07:00

... about to make our goal for the Make-A-Wish fundraiser! Stoked. Thank you ALL for the contributions.

Clinic tomorrow for her check up & IV chemo... getting close to the finish line.

BLOG:
http://www.makeawishfoundationofutah.blogspot.com/

FUNDRAISER:
http://duckyderby.kintera.org/faf/r.asp?t=3&i=425937

DONATE A DUCKY IN ROGAN'S NAME:
http://duckyderby.kintera.org/faf/donorReg/donorPledge.asp?ievent=425937&supId=296659264

2 YEAR ANNIVERSARY!

2010-08-02T12:29:00.000-07:00

Today is the exact, 2 year anniversary of Rogan's diagnosis. We are thrilled to celebrate her health today... praise thanks to the many doctors & nurses along the way... and scream THANK YOU to all of our friends & family who have helped us get through this.

Last week we received an unbelievable donation towards Rogan's medical fund from UGG Australia. THANK YOU, love & respect to our family there; DARCEY BRINKERHOFF, CONNIE RISHWAIN & LEAH LARSON and everyone involved... we all cried and breathed sighs of relief when we got word.

Today we celebrate... takin' the day off & headed to the lake... then bar b & make a cake for our little chemo princess warrior. Thursday we head to clinic for her check up and IV chemo.

Rogan is lovin' Summer & not having to deal w/ a Broviac line.

Nature hike. Provo River Falls, Uinta Mountains.

Basin rec splash park:

We made it down to Hatch, UT & spent a relaxing few days with Grandma Bonnie. Her Grandpa Roger was missed... but his spirit was strongly felt and we all had a blast.

Thanks to Nana Noo Noo, Aunt Chris & Paul Clark for also hosting us at Bear Lake. The water was warm and the girls loved it. Rogan is learning to swim and is obsessed with the water.

Warming up in the hot sand:

Coco ate sand... it made her happy, so she sang about it:

Mom & Dad carved out some together time & re-charged the batteries:

Thanks again for reading and supporting Go Rogan.

MAKE-A-WISH Utah. Thank you.

2010-07-13T08:53:00.000-07:00

Endless thanks to the Utah Chapter of the Make-A-Wish Foundation for sending our family to Maui to honor Rogan's wish. With all that we have going on.. and with the continued costs of Rogan's cancer treatment... this trip was definitely NOT in the budget. We are forever grateful... and it will exactly what our family needs.

The Foundation will handle the big expense of getting there + 1 week of accommodations... and a few awesome activity's that Rogan will flip out on... submarine ride, glass bottom boat tour, etc. She's already obsessed w/ water and has little to no fear. Need to book swim lessons pronto!

Please read further about what this incredible organization is doing for families across the state.

I've set up a page for their latest fundraiser to make donations in Rogan's name. Please donate if you are so compelled. Thank you.

Blog:

http://www.makeawishfoundationofutah.blogspot.com/

Fundraiser:

http://duckyderby.kintera.org/faf/r.asp?t=3&i=425937

Donate ducky's in Rogan's name!

http://duckyderby.kintera.org/faf/donorReg/donorPledge.asp?ievent=425937&supId=296659264

M A U I

2010-07-12T15:37:00.000-07:00

Please come to Maui if you can... to celebrate GO ROGAN. We are staying at the Lahaina Hyatt from Nov 1 - 14. Below is our flight info... if you'd like to travel with us.

Here are the girls, training for Maui. The water looks inviting... but it's not. It's take-your-breath-away ice-melt. We can't wait.

Note Rogan's over-sized, inflatable Seal... named "Cupcake-cha".

7.12.10

2010-07-12T15:02:00.000-07:00

Big day last Thursday w/ Rogan's 2nd to last LP (lumbar puncture)! Logistically; it was seamless... emotionally; it just doesn't get easier... ever. We had requested Sean... the vein ninja, to set the IV... & he got it 1st go. Stoked. I still cried though & was to rattled to be able to thank him profusely w/ words. Sean, if you are reading this; THANK YOU. You are a hero... and we can only hope to get you for the remaining IV's.

Rogan's blood counts are right where the docs want them right now.  Her ANC (bacteria & virus fighting cells) are low... but luckily it's Summer time and there aren't too many bugs circulating.

Peripheral IV chemo:

Waiting room for her LP... setting an IV in her doll:

Post opp recovery time... sleeping off the anesthesia.

6.22.10

2010-06-22T22:27:00.000-07:00

So, we got the speciation & sure eneough.... a bug that loves plastic.  So Rogan finished the antibiotics and we had the central line surgically removed.

"Pre-Opp Chemo Warrior Princess":

Before & after:

Post opp was brutal... long day, just not feeling the best.

PRO:   she can bath & swim!

CON: periferhal IV's... for the IV chemo, every 30 days.  I was present for # 2, of 5... and I'll count that as one of the hardest days yet.  IV team tried twice in one hand... then Case & I "re-staffed" & they found a healthy vein in the other hand... 1st go.  Shaun.  The man.  He had a shirt on that said "No Vein... No Problem."  I wanted to man-hug him & buy him a beer... but I just cried & shook his hand instead.  Hero.

IV chemo... then straight to the park, bruised hands & all:

Life is good... THX for the support.  Go Rogan.

Clifford The Big Red Dog:

Shaka at Hogle Zoo.  (save your money & go to Africa... that place is horrifying.)

Main Street Trolley:

With a Main Street friend @ The Chocolate Factory:

Rogan's very 1st day of school... well, un-officially... it's 1/2 day camp for 4 days at the co-op school. (Is it really this hard to see your kids grow up?)

Here's what happens to Coco if she doesn't get a hot n' fresh, organic, whole wheat, buttermilk pancake w/ butter, syrup & strawberry jam within 9 minutes of waking up in the morning:

Parental FYI: When friends & family nickname your kid things like; "Captain Destructo" and "Whitesnake"... you are in trouble.

She's pulling it together though... w/ her new found motor skills & use of words... & makes up for every ounce of gnarliness w/ her cute laugh & occasional affectionate snuggle.

bacteria_log #4

2010-04-30T11:27:00.000-07:00

Big couple of weeks. Since we've been outpatient Rogan has been on a tight schedule of IV antibiotics through her central line. At 6 AM, 2 PM & 10 PM she receives the 1 med over a 7 minute push. At the 2 PM she gets the 7 minute push and a second med over 30 minutes. No side effects... just challenging for all involved.

Clockwise from top left: 1st day back w/ Cokes on the couch, nap time IV antibiotics, same, wanting to feed baby Renton, nap time w/ Coco in the car, sleeping beauty.

Apres clinic visit pizza stop. Brian Craighill photo.

So last Wednesday we got the speciation and Thursday we met w/ her docs to discuss. As we thought, the bug is notoriously "sticky" and was probably hiding out on her line. On Tuesday she went in for surgery to have it removed. It was a long day, to say the least, but she dominated... as usual. She's feeling 100% and we are looking forward to Summer & swimming.

Checking her email w/ a cup of coffee in the waiting room. Post op. Before & after.

Thanks for reading and for all of your support.

bacteria_log #3

2010-04-25T11:06:00.000-07:00

At 4 AM today they told Case that Saturday's blood culture showed as negative... also got closer to figuring out what what the bug is: "gram negative baccilli non-lactose fermenting". Yum. If this next culture reads negative she will hopefully be released tomorrow. She is still feeling great... literally bouncing off the walls in there.

... still don't know the exact speciation of the bacteria, but the antibiotics are working. They will continue the antibiotics for at least 14 more days to make sure it is 100% killed... & after that, will continue to take blood draws & culture them to see if the bacteria pops up again. So, the bug has either been wiped out, or there is a chance that it could be "clingy"... "hiding out" by adhering to her line... and not sloughing off when they draw the blood for the cultures. At that point we strongly consider removing the line and dealing with the peripherals pokes until October. Very much hoping for the former...

Here are some shots from my visit yesterday... able to go for a long wagon ride w/ Mom & even snuck out side... took her pants off and ran in the grass.

I am back to work today... Casey came home to see Coco and her Mom is with Rogan at the hospital. Rogan affectionately calls her "Nana Noo Noo"... and she is a certified baby whisperer... so, I'm sure Rogan is fine.

... feel very lucky & fortunate to have her on the mend and coming home soon. Grateful for the early detection and that the antibiotics and her own cells knocked it back so effectively.

The ICS unit at Primary's is a tough place to be, for any amount of time and there are plenty of kids who aren't as lucky or who have worse diagnosis'. Massive respect to all the docs & nurses... and love to all the other kids and their families.

bacteria_log #2

2010-04-24T08:25:00.000-07:00

Friday's 10 AM blood culture showed as positive at 4 AM today... so the bug is still present, as of yesterday AM. Rogan will be hospitalized until Monday, at the latest. The bug is of the gram negative family. She continues to get the cocktail of antibiotics & plenty of fluids.

Aside from extreme boredom, wanting her Dada, wanting her Cokes & to come home... she feels good. Below are pics from last night.

My take is that the bug is clinging to her line... contaminating each draw. My guess is if there were any sizable volume of the bacteria in her bloodstream:

A. she'd be sick

B. she'd be sick from the antibiotics killing the bacteria.

Docs said that as a foreign object, bugs can have a tendency to stick to the line. If this is the case... the bug will obviously show in every blood draw. We hope to get a speciation today... and at that point they'll focus an antibiotic on that species. They may be able to fill the line w/ that focused antibiotic... or we may opt to have the line removed. There is no way to find out where the bug is for certain... so it would be a gamble. If we elect to do this Rogan will need to get poked for an IV 5 more times... for her forthcoming treatment. Tough as nails.

They are also running tests on a bladder infection... her potty patterns are perfectly normal... so this is doubtful.

Loving that she's not feeling sick... hating that the docs can't knock this out and she could come home. Loving my hero of a wife... hating cancer.

A negative blood culture... or a speciation... please. Go Rogan.

bacteria

2010-04-23T12:38:00.000-07:00

Rogan is at Primary Children's w/ Case right now... battling a bacterial infection. She woke yesterday feeling fine... then spiked a fever at about 10 AM. She went to the ER immediately for her blood draw & a blanket antibiotic. She slept a bit and felt better... crushed a sizable ice cream cone and was released. She felt great when she arrived... but got sick again at approx 4 PM.... but after that felt great again. She slept well through the night and woke today thirsty and hungry for pancakes.

We got the call at 9 AM that something popped up her blood culture from yesterday.... alarming that it showed so quickly... meaning it was growing quick... or that there was already high volume of the bug. It is a dangerous one... so... back down to the hospital immediately.

... chances are that the bacteria entered her system through her central line... but we are ultra diligent about its cleanliness and maintenance... so, that is frustrating. Not sure how or why... but like her disease.. there's no sense in even thinking about that... only focusing on beating it and the positive outcome.

Docs say that the strain of bacteria she has is rare and dangerous... but her blood counts are high and she's been fighting it with the antibiotics, within an hour of it showing symptoms yesterday AM. They are confident they can beat it quick... with the focused antibiotic... and her counts being high. The antibiotic kills the bacteria and creates a surplus of toxins.. which will make her sick. They flush them out with meds that help facilitate that evacuation & a steady intake of fluids. That said, she'll be admitted for the next 24 hours. I'll pay the girls a visit this afternoon... to deliver a healthy dinner and keep Rogan stoked.

Thanks for the positive vibrations... they help more than you'll ever know. Stay tuned for the update.

A bird's eye of her very first set of pig tails:

HERE TODAY... GONE TO MAUI.

2010-04-14T19:56:00.000-07:00

... got the official call from Mike, from Make-A-Wish, today! It wasn't a very productive conversation... since I became instantly choked up at the mere thought of Rogan being able to get wet and romp in the sand. I was able to give him my email address... and we are moving forward! Sorry Mike!... and thank you.

Please stand by for firm dates and come if you can... to share in the celebration of Rogan Tomey Crawford.

Since last post we celebrated Easter at Promontory. The girls were beautifully dressed in their new Spring gowns. They don't get their paws on too much candy... so it ended up being a pretty awkward & uneventful scenario. They both locked into a bizarre candy consumption coma and became completely anti-social... didn't even care to hug the Easter bunny!

Stories: as promised:

Rogan wants to capture the neighbor's cat... re-name it "Meow-meow", feed it milk & allow it to lick my face. HEEEEEeeeeeeeeeeeeeck no.

Fo real:

The real "dragon slayer":

Coco is sick of the snow... so Auntie Jesa picked out her very 1st swim suit:

Brian Craighill photo:

Thank you for reading.

GO ROGAN.

OUR HERO

2010-03-18T08:29:00.000-07:00

ALL GOOD! So sorry for the lack of posts... been so busy livin'. Things are well for us and Rogan. She made it through the winter without any major sickness... just a couple of small scale colds.

Since my last post Rogan turned 3 & started skiing. She loves to tell stories... she's obsessed with the neighbor's cat & loves to talk about how she's going to let it inside & feed it milk & let it lick your face. Hmmm... no thanks.

Rogan is scheduled to finish treatment in October... and at that point; will get her central line removed. We plan to take our 1st vacation in over 3 years. Our plan is to get to Maui, Hawaii for a king size celebration of life... the 1st 2 weeks of November. This is being made possible by the incredible organization, The Make A Wish Foundation... and our wonderful "Wish Givers" Deb Hartley & Temple Smith. We couldn't be more excited. Rogan is excited to "swim wiff da fishies & find a turtle"... and if she sees a shark she'll "swim weeeel fast." Please stay tuned for the dates and come if you can. Thank you so much for following Go Rogan and for all the support... not sure how any family gets through something like this without the network of friends & family that we have.

I've got great photos & footage to share... so please check back next week... I'll have some live by this weekend.

(Photo by Brian Craighill. Congrats to him and his lovely wife Jessica, on their first born; Renton Paul. Love.)

RODE FOR ROGAN

2009-11-18T17:07:00.000-08:00

The RIDE FOR ROGAN .COM crew is home!... one more days ride to dip a wheel in the Atlantic ocean and make it legit. We love you Danny, Jerry and Joe. R E S P E C T .

Sunshine!

2009-11-02T20:05:00.000-08:00

I asked Rogan if she'd sing for Danny, Jerry & Joe Ricciotti.

She obliged... then wanted to shoot photos.

RIDE FOR ROGAN.COM

10-29-09

2009-10-27T19:09:00.000-07:00

An EPIC trip down to Southern Utah to connect with the RIDE FOR ROGAN crew! Again, these dudes are gnarly!… and they have elected to ride their bikes cross country, from San Fran, CA to Ocean City, MD in order to raise awareness for Rogan's cancer & the costs of her ongoing treatments.

Special thanks to Grandma Bon for her hospitality. The boys were able to take an action packed day off… complete with a pancake breakfast, ATV session and Main Street shopping in Panguitch! Rogan was stoked and learned how to throw her first shaka. Here are the pics from their visit. (note our A+ site for the "man camp"… Ross had left me with a complex about "guy time" and I got overly excited, had too much fun and ended up burning my foot on a rock.)

I can't thank these men enough for what they are doing for us. I was able to ride a meager 10 miles with them on my track bike… but wished I could have continued on in support. I choke up each time I speak of them. Follow them on their voyage via Facebook or on the blog: RIDE FOR ROGAN .COM

Jerry (the one with a small tree in his hair in above slideshow) recently completed an incredible surf flick too! Get it here!

Thank you Danny, Jerry and Joe Ricciotti.

Here are the girls dancing to Jerry's movie. Coco's latest trademark, living room dancehall move is:

1. Grab on to something solid.

2. Sway hips violently until I fall down.

3. Repeat.

It was a whirlwind tour for us… hitting Bear Lake the day before… then down to Hatch. That was the first time we'd been that far from the Hospital and it secretly felt great. Nana Shany hooked it up well at Bear Lake and we wished we could have logged a week there. That place is epic… and reminds me of the Mediteranean from certain angles.

… plus, with pitstops like this one on the way there; it's kind of a no-brainer:

Nana Shany took ALL the cousins to the Pumpkin Patch. They loved it!

I think I mentioned this before, but, Rogan is a Make-A-Wish child… and we are leaning towards a Disney Land mission, but will probably wait until her central line is removed next year and she can swim. That thing is still working like a charm and we are working hard to make sure it stays that way, that Rogan avoids another surgery, and that she can graduate next year and be in the 20% of patients, whose original central line lasts the duration of treatment. I instantly tear up imagining what it will be like to duck under a warm ocean wave with her.

Fun little Make-A-Wish promo at our local Cold Stone. Rogan was intended to be a greeter, and / or ice cream scooper… but she had more fun climbing on the landscaping out front. Oh well.

Top secret, early skate park session:

All is well and she is charging along. She started another round of chemo yesterday and it involved a Lumbar Puncture. She ruled it. With the flu going around, they have limited patients to having only one parent present and no siblings. That was the 2nd clinic day and 1st lumbar puncture that I have missed. I was a mess all day… until she got home and I could hold her. I'm sneaking in next time.

We are bracing for winter / flu season and so far, so good. Hand sani, you are my friend. We logged many hours at the park… before the headlines broke about the flu. She was ripping around… climbing shear walls without a spotter, talking to random kids and getting lost in full make-believe zone. She would charge the slide and say "C'MON DADDY, C'MON… IS SUPA FUN!" She is amazing to us right now.

A BIG, public thank you, love & respect to Casey for killing it at life... and doing such a miraculous job of raising 2 wild girls and leading the family through the "crazy daily" of our entrepreneurial lifestyles. I love you and cannot credit you enough.

... and thank you all for following this and for all of your love and support. Go Rogan.

PS… Coco's officially hit the terrible 2's early… bypassing "drunken monkey" status, straight to "drunk, angry Pirate" status.

RIDE FOR ROGAN

2009-09-18T16:39:00.000-07:00

.. so... I'm not gonna lie to you... this post has been egregiously delayed due to the fact that it makes me wanna cry like a little baby. Really.

Close family friends of mine from Annapolis, MD. Brothers Danny and Jerry Ricciotti and cousin, Joe Ricciotti. DUDES ARE GNARLY. Enough said.

Follow them on their blog at RIDE FOR ROGAN .COM

Fan them on Facebook.

...hard to express our gratitude for what they are doing. They are making their way through Southern Utah soon and we are hoping to track them down and say thank you in person.

So epic.... nuff respect.

So....Rogan is doing great right now... avoiding the trips to Primary's by keeping her away from sickies. She's older now and seems to have a better understanding of how un-fun it is to be there... plus it's now out of her routine, she's only there once or twice a month nowadays. So, when we pull up, it's a heartbreaker to hear her say "Noooooooo.... I wanna go home!"

She picked up a minor virus last week.... but didn't need to spend the night... only need to come in for an antibiotic and the ever harsh mucous test (to rule out any upper respitory illness). Symptoms were pretty odd though and gave Daddy a minor heart attack. But all ended well and we don't even need to go into that.

Other than that... she is fit as an Ox... digging life and feeling well. Overall, the course that she is in has been easy. We have fallen into a nice little routine, crushed chemo pills daily (sometimes twice to three times), flush and fill the Broviac line each night (central line... or "Tooboos" to Rogan.).... then clinic once a month for the IV chemo... and a spinal tap each quarter. We still have our moments... still over a year to go... painful dressing changes once a week... and everyone is dying to travel and swim.... but, it is all over ridden by the fact that she is ruling.

Here is the latest and greatest:

Private mini-ramp session... with Coco right behind her:

She didn't learn this from me:

Painting T's and select art pieces w/ Shea on Coco's 1st birthday. Ross, the pink bear made another appearance and stoked the girls. They love it... but I'm beginning to think it's a little weird.

Also made it to the resort on Coco's 1st. I got smoked in rock climbing by my wife.... but then Rogan and I got the victory in the Alpine Slide.

Thanks for following Go Rogan.... stay tuned for the Ride For Rogan update!

7-24-09

2009-07-24T16:02:00.000-07:00

... with cousin Shea. Naughty or nice?

Great times at Rogan's new secret spot at Mr. Bill's. Each time we need to leave this place it's been a class 9 melt down. She's in love with the water... can't wait to swim next winter.

.... paddle for the kayak:

I'm pretty positive that this is NOT U.S. Coast Guard OR wife approved:

Lulu... the smallest dog in North America:

Had a blast at the Rex's house for a proper bar b. Rogan was psyched on the Slip N' Slide... I went through 2 AquaGuard's, but managed to keep her dry. So fun.

... so, the exact 1 year Anniversary of Rogan's diagnosis and initial chemo treatment is coming up, next Sunday, 8-2-09!... not sure of the agenda yet, but the "1st Annual Chemo Warrior Princess Celebration of Life" is fully ON. Stay tuned. Thanks for the support.

For Rogan, Forever Ago

2009-07-14T09:14:00.000-07:00

Rogan is ruling right now. She started another round of chemo on Thursday... so she got her IV chemo and started the steroid for 5 days. We celebrated by taking her to her very 1st concert!... Jenny Lewis w/ Bon Iver. It was a well planned, tactical strike... we avoided sickies, danced and played in the fountain... (standard Salt Lake protocol). We were able to secure a nice little corner spot and could still see the faces of the musicians. Here we are... having fun and doing the Bear technique.... RAAAAAAARRRRR!

5 meter fountain sprints... training for future Olympics.

Rogan is waaaay into the Park right now. Without a lot of bugs going around... we've been letting her have at... and she loves it. She's surprisingly socially adept... given the past months of relative seclusion. It's amazing to see her interact and lead other kids around her. She has Casey's personality, without a doubt. Her fitness level is A+... and nearly brings me to tears when I reflect on it. Her legs are at 100 % and she's got the cutest bounce in her step all of the sudden. She's come a long way from not being able to walk, a year ago. This stokes me:

We made it to the Lake for the 1st time on Sunday. It's frustrating to not be able to fully submerge and really swim... (Maui, Thanksgiving 2010, be there)... but the ever trusty AquaGuard let her get to waste level and have fun. She loved it:

Our friend Ross acquired a full-scale pink Bear suit off E-bay. He put it on and paid Rogan a visit. She freaked. She yelled and said "Mama ook! Mama ook! A beer! I love him! I wan touch him!" She ran to him and hugged and kissed him. I was devastated that I didn't capture it on film... and even more devastated that I didn't have my camera when things got wierd and random strangers came over to hug the bear. Thanks Ross.

Rogan saw a belly dancer on Main Street and they got down. She has my Dad's moves already fo sho.

Here's Captain Destructo at her best. I think this is her 3rd or 4th piece.... she got through the good stuff and went straight into the rind. Yikes. This kid's intake is OFF the charts.... hard to believe that we hatched her and that she wasn't raised by wolves and left at our doorstep... she's nearly as tall as Rogan already, has the voice of a Velociraptor and a vice-like grip. Look out world.

Thanks for following... we are on the last day of the roid for this round... so she's getting testy and her mouth hurts a bit. But overall she is well and beating it. L I V E S T R O N G.

ook my can doo!

2009-06-17T19:15:00.000-07:00

OK... sorry again for the delay. We opened a store on Main Street (P R O S P E C T).... and I have been staffed as marketing / art guy / random task.... things on the real estate front have picked up as well, so, needless to say, things have been hectic. So, here we go:

These are old pics... but sooooo good.
1. Rogan and cousin Shea, at Casey's 33rd birthday. I felt like a photographer on the Discovery Channel, capturing a rare feeding. I was scared to get too close.
2. Coco & Rogan: tub time.
3. Taking Cookie for a walk in Dad's sweat soaked snowboard socks and gloves.
4. Dr. Rogan, checking Sophia's ("Fia") blood pressure.

I'm sorry I have yet to update Rogan's blood count charts. Her platelets & red blood are fine... but her ANC (bacteria & virus fighting white cells) are still very low (500 - 1500).... normal is around 5,000. We checked in with the docs and this is what they want... it is a good indication that her body responds to the chemo and that if it is suppressing her ANC then it is also killing the 1 or 2 cancer cells (if any) that may still be lingering. So, obviously she is at risk of picking up a bug... and the deal is if she spikes a fever of 101 for 1 hour or if she hits 102... then we go to the hospital. They immediately draw blood and run a culture over 48 hours to see if it is growing a bacteria. She also gets IV fluids and antibiotics to start fighting anything.

We are sick of being on quarantine, so we have been getting out a lot with her... just doing our best to keep her away from sick people. She spiked a fever last month and we ended up spending 2 nights in the hospital. It was miserable.... and super scary, because she showed no symptoms, besides the fever. She also had a some type of shift in her ANC... which led everyone to believe that it may be bacterial. Coco got banned from sleepovers at Primary's for being too wild... so I had to spend the 2nd night alone, with Rogan. Sleep doesn't exist there.... especially if you're over 4 feet tall or your kid's central line is hooked up to an IV and she's rolling over constantly trying to get comfortable. I only had to re-staff 1 nurse and overall, things were as seamless as can be expected. She ended up beating the fever back and when nothing showed on the culture within 2 days... we were cleared to go home and it was chalked up to a random kid fever. Stoked. It is so sad to see your kids get sick. I hate it.

Her counts were zeroed out from the bug and she took a week off of chemo..... to recover, which is unnerving. Since then, she's just been plugging along eating and sleeping well and growing and getting strong like a normal girl. Here's a couple shots from her last spinal tap... best 1 yet, because the anesthesiologist was A+. He took the time to build a good rapport with her before he injected the meds... and she never got scared or cried.

Her hair is coming back and it is epic. We snuck into Auntie's house and poached some eye make-up.... then accidentally smeared it all over the floor.

These girls rule Norfolk Ave:

October 2010 we'll be swimming!

Rogan is amazing right now and we feel so grateful. She talks a ton... everything regarding a timeline is "2 weeks"... and anything regarding a quantity is "9, 10". She'll tell you a story about her mama bird or going on a Bear Hunt.... facial expressions are so intense and classic. She loves to "cheers" at the dinner table.... it's fun, except she likes to do it every 30 seconds and then she slams her milk bottle on the table like a Viking and sprays milk everywhere.

She loves to show off. She can stand on her skateboard and I'll pull her holding her and she says "look my can doo". Here she is at Whole Foods with her very own, well sanitized cart. "Follow me Mama!"

Rogan lost her other Papa on May 2nd, after a valiant fight against an aggressive Melanoma Cancer. He loved her so much and was a brilliant Grandfather to her and a legend and mentor to us. Respect.

no news is good news...

2009-06-01T13:22:00.000-07:00

....sorry for the lack of posts!..... Rogan is well... just ripping along. (so sorry... we have all been busier than...) She picked up a little bug a few weeks ago, spiked a fever and we spent 2 nights at Primary's... but just ended up being a random kid virus.

I will post this week with pics... Rogan is a wild woman right now. Her hair is coming back in and it is gorgeous. Bed head never looked so good. She's fit and strong and digging life. Check back soon for a laugh. Thanks!

chargin' along!...

2009-03-23T08:40:00.000-07:00

A real life angel paid us a visit last week: 6th Grade Ecker Hill student, Maddie Carpenter. Maddie’s younger brother beat cancer at the age of 4... and when she learned of Rogan’s illness she took it upon herself to lend a huge hand.

Through selling her delicous rice crispie treats, Maddie was able to raise a ton of money and donated it directly to the Go Rogan Foundation to assist with her medical bills. The Carpenter family also gifted Case & I a much needed night out at any Bill White restaurant!... we can’t find a sitter soon enough! Maddie put her sewing skills to the test and crafted Rogan a gorgeous blanket. Rogan said it was “snuggy snuggy“. Maddie also gave Rogan a super cute Elmo hug-me doll, complete with heart t-shirt and an Elmo cell phone. She's not showing it the photo... but she was exstatic! When the Carpenter's left, all Rogan kept saying was, "eh my en o?"... ("where'd my friend go?")

Rogan has been feeling great and we are so thankful. She acts like her perfect self, naps from 1 - 3 each day and sleeps through the night... in her own crib! It is a dream. She is still on a steady chemo regiment and her white counts are still very low (at 600... normal healthy human is at approx 5,000). She picked up a bit of a cold the other day and was running a little hot. Her fever never spiked above 100 and we were spared the trip down to Primary’s.

We are on a solid routine and looking forward to October of 2010!... Rogan’s scheduled treatment completion date. Upon completion we she will undergo surgery to have her central line removed.... can’t wait for a life with out nightly flush n’ fills and 2 dressing changes a week! (saline & heparin recycling:)

Once off chemo completely, Rogan will still need to get to clinic once a month... then once every 3 months to keep tabs on her blood counts. They will keep a close eye for the rest of her life... a small price to pay for her well being.

She’s so grown up now... talking up a storm and making all the “big girl” transitions. Her hair is starting to grow back and it is amazing.

“Princess party time” with cousin Shea:

A+ photography via briancraighill.com! A great man, indeed.

Yikes!:

Thank you for following Go Rogan.

MAINTENANCE!....really...

2009-02-24T14:40:00.000-08:00

... 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!

2009-02-05T09:07:00.000-08:00

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

2009-01-20T17:35:00.000-08:00

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

2008-12-29T21:23:00.000-08:00

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

2008-12-18T19:32:00.000-08:00

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!

2008-11-30T11:38:00.000-08:00

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!

2008-11-23T16:26:00.000-08:00

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.

Interim Maintenance!

2008-10-20T09:58:00.000-07:00

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.

CONSOLIDATION!

2008-09-20T14:41:00.000-07:00

...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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Week 3 & 4

2008-09-05T09:26:00.000-07:00

Sorry for the delay... we had our second child on Sunday.

_Coco Caldwell Crawford

_Sunday, 8/31/2008 8:15 AM

_8 lbs. 1 oz.

_20.5"

CLICK HERE TO VIEW PHOTOSTREAM

Mom went sans drugs...and Coco was slightly posterior... so the "all smiles" pic is very deceiving. Casey is gnarly.

Rogan loves sister Coco and they like to watch Elmo together... Dad is over Elmo and can't wait until she graduates to "Surf's Up" and "Finding Nemo".

Rogan made phenomenal progress during week 3 & 4... maintaining "best response possible" and "highest cure rate" bracket. Week 3 clinic day, 8/25, we were told to expect transfusions, possibly both red blood & platelets.... but her counts were stable and she didn't need either! ... so with just vitals and a blood draw, no surgery... that was the easiest clinic day to date.

The side effects from the "chemo cocktail", specifically the steroid, have manifested full force:

_irritability

_raging appetite, weight gain & water retention

_restlessness, insomnia

This is how chemo makes you feel:

...still no walking due to:

_bone pain from being overcrowded w/ Leukemic cells to going hollow

_muscle pain from the roids

_weight gain & water retention

....resulting in plenty of Elmo hours logged:

The hair lose was mounting, so we were forced to do some maintenance:

...and then was force to do even more maintenance a day later whilst side tracked by a Cafe Rio burrito [raging appetite]

CLINIC DAY_Week 4_9/2/2008

Epic news Tuesday as they drew prelim blood and saw that her counts were up from last week!... meaning she is starting to make her own cells again. In particular, her bacteria fighting white cells [ANC]...so they hope she will be out of the extreme danger zone in a couple weeks! This is best case scenario and the doctors targeted goal. We then needed the 1st month bench mark bone marrow aspirate and spinal tap. Mama went to feed Coco and Papa Roger and I were left with the daunting task. This one is gnarly and doesn't seem to get any easier...as you must carry her into the operating room [O.R.] which is bright white, well-lit w/ all sorts of equipment and docs and nurses everywhere... [plenty intimidating in itself]. I hold Rogan and the doc injects anesthesia directly into her central line in her chest and she goes limp and falls asleep within 3 seconds. I lay her down, she gets oxygen via mask, and they go to work. It was subsequently followed by 2 grown men crying and then some good meaningful father / son connection and conversation. 30 minutes later [seemingly hours] we were both in recovery with Rogan. She was on her side and came to... asked for baba and numana. Big sigh of relief. The bone marrow went to Seattle Tuesday for an extra-microscopic review.... we will know this afternoon, Friday 9/5.

...so this first month [INDUCTION] has been targeted at the cancer in her marrow....where it lives and grows [metastasize]. This second month [CONSOLIDATION] will be a new chemo-cocktail targeted at her central nervous system...in case there is any cancer in there, which we believe there is not. She starts this coming Monday, 9/8 and we are fired up. In the meantime, she gets an entire break from ALL chemo drugs!... even the steroid. Which is ideal... within 48 hours of being off the steroid we saw a drastic improvement. She slept through the night without snacking...woke up without crying, smiled often, took a bath without bawling, laughed for the 1st time in 3 weeks and even crawled for the first time in 3.5 weeks. A wild world of difference. That was a tear-JERKER. Captured below is evidence of the REAL ROGAN... off steroids and loving it.

...as I type, Rogan is on the floor, reading a book by her self [which is unprecedented]...doing her "shoulder shimmy" to the back ground beats. [insert tears of pride and joy here] She is a grandchild to Charles Mason Crawford III, that is for sure. I am missing him a lot nowadays...so thank you very, very much to the special friends and mentors in my life who are helping me fill in that giant gap.

Thanks again to all our friends and family for the over the top love and support. LOVE & RESPECT.

Week 3

2008-08-24T16:05:00.000-07:00

Fascinating...right?

Week 3 can be classified as “difficult”. Our Monday 8/18 clinic day was a relative breeze, with no surgery or transfusions….no surgery scheduled for this coming Monday 8/25 [due to her good 7 day benchmark] but we are expecting transfusions…potentially both red blood and platelets. These are not painful…just time consuming and any time in the hospital is not fun.

All the meds have officially set in and are manifesting their expected “side-effects”….the steroid in particular…which she receives twice a day. She’s not yet “Chucky”…but let’s put it nicely; if she is not eating, watching Elmo [A-mo] or going on a walk [Wok!]….she is NOT HAPPY. As mentioned earlier, the steroid has also made her appetite spike off the charts….big carbs in particular. I was not there to witness it, but it is claimed that she ate an entire Pizza during one feeding. Fortunately or unfortunately, depending on who is on bathroom duty, she still enjoys her veggies and fruits...particularly frozen peas in a cup…which she can be seen above, sharing with Big Bird [who by the way, Sesame Street mgmt needs to re-staff whomever does his voice…because it is creeping me out] She feels 10 lbs heavier, has a bit of a double chin…and towards the end of the day her belly begins to look unnatural.

…still no walking. It has now been 42+ days…and we are getting anxious. Our doctors assure us that she will be cruising soon, but it is still very difficult to accept…and it obviously has her frustrated. We did get her to stand a bit in the beginning of the week at her new stove…making, you guessed it: Pizza. [FYI, please don’t say that word in her prescence…because she will demand it, regardless of the time of day.]

On the brighter side, she is virtually 100% potty trained on both fronts. A slight case of “thrush”…which is believed to have made things slightly painful down South, is to thank.

She is holding on to her hair so far…so hopefully that means that all the chemo is too busy killing the Cancer to be bothered with the hair.

Move over Mom & Dad, Elmo is now sleeping w/ us too. [fortunately we were just gifted a king size bed! Thank you!]

Special thank you to our Norfolk Avenue neighbors for the nightly meals…that is a terrific program and is so much appreciated.

...and a huge thank you our friends and family for all the fun gifts. Some days, it is tough to get just 1 laugh or smile out of her. Above is a rare smile captured upon the arrival of her new kitchen set.

...and the BIGGEST thanks to her Mom, Casey...for so gracefully dealing with:

_her "roid induced" demands

_"roid induced" fits of whining and crying

_midnight trips to the bathroom [seemingly every 10 minutes]

_midnight trips to the fridge [seemingly every 10 minutes too]

_and just plain clinging like glue to Mama

You lead by example. I LOVE YOU.

2008-08-15T12:19:00.000-07:00

...so we have been "out-patient" since Thursday evening 8/7. The more days we get away from the hospital and her IV chemo, the better she does. Above is a sequence of her taken on Sunday 8/10...listening to dancehall Reggae w/ Dad...enjoying it, and dancing...plus an interview with Dad, Mom and Auntie CamCam regarding teeth brushing, Sesame Street and her binky... [which we call "JaJa"...and Rogan calls "GaGa"].

Home is much more enjoyable than our hospital room and it has been nice to take a break from "Elmo in Grouchland" [except for the opening scene....a montage of Elmo's ode to his blanket....which is amazing]. We have a wonderful home-nurse named Lynn, who is on-call on an as-needed basis. She helped us change her dressing Friday night....which was just as rugged as the first time. Rogan was only sick once and the most stressful week is now over.

On Monday 8/11 we were back in the hospital at 8 AM for our scheduled "Clinic Day"...another morning spent NPO [fasting]....which is always tough for Rogan. We had blood drawn and then went down stairs for her procedure....where she is taken into the surgery room and given anesthesia through her central line, immediately falls asleep [scary] and is handed off to the doctors. Over the next 30 minutes she had the following work done:

1.) bone marrow aspirate

2.) back poke [test and treat spinal fluid]

3.) change central line dressing [thank heavens!....better you than me, doc.]

She woke up groggy and angry...yelling for a baba [bottle] and a numana [banana]. She proceeded to crush an entire large banana in 20 seconds and wash it down with a pint of milk, Cheerios and cranberries. [one of the drugs she is receiving twice a day is a steroid...that attacks the "quick-multiplying" Leukemic cells...and also makes her ravenously hungry]

After recovery, we were back up stairs where Rogan received her IV chemo via her central line. Her blood draw showed that she was low on platelets, so she received 1 bag via IV. We did not leave the hospital until 2:30 PM.

Home since Monday afternoon 8/11....the greatest challenge has been administering her combination of 4 different drugs orally. Despite being ravenously hungry and eating like her Dad.... her "distinguished palette" can pick it up in most everything we have tried to disguise it in....and it has now become a full-time job in itself. Aside from Sesame Street in her high chair and staring at the Tractor on our street...pretty much everything else seams to be a nuisance to her.... including bath time!...which was once a favorite. The doctors have warned us of this inevitable "roid rage".

…wanting to keep an extra close eye on her, she has now joined us in bed...which Dad has aggressively spent 19 months attempting to avoid at all costs. She likes to sleep completely perpendicular to us...usually her sweaty head in Dad's neck, swatting my face every time I move and her heals in Mom's belly, kicking like Bruce Lee. At approx 3 AM each night she wakes up and goes on another “roid induced” eating binge. 2 nights ago she woke up and ate 2 pieces of toast with jam and a whole milk bottle….last night she ate 2 entire bananas and a whole milk bottle.

GREAT NEWS: On Thursday 8/14 we got a call back from her doctor on the results of Monday’s bone marrow aspirate….it showed no production of Leukemic cells, which is the best news possible for her Day 7 benchmark and also puts her in the highest “cure rate” possible.

WALKING: It has now been approximately 19 days that Rogan has refused to walk. Again, our doctors attribute that to the Leukemic cells in the bone marrow, “crowding out” the space and creating “bone pain”. 2 bone marrow aspirates and 2 spinal taps only 7 days apart can’t help either. We hope that the chemo will knock the Cancer back enough in the coming week to where the pain is relieved and she takes her first steps again. Before she got sick she was almost running…and Mom & Dad had taught her to kick & trap a soccer ball and do a “Sumo step”….[where if you say “Sumo…..step!” she will balance on 1 leg, then slam the other down and laugh.] Her hair is beginning to thin and fall out a bit…at approximately the same rate as Dad’s…so we may be shaving our heads at about the same time.

NEW BABY: Rogan’s new brother or sister is due 8/30. Mom is feeling great and, I won’t go in to specifics, but things are progressing as scheduled and we are looking forward to the newbie. A full moon and a cold front are on the horizon…so stay tuned. The Canyon is closed for a few nights this week...so we are hoping to avoid going into labor on one of those nights and being forced to off-road it over Guardsman’s Pass. If you are reading this, please help us “manifest” a delivery when the Canyon is open and my sister is still in town.

THANK YOU: …to all of our wonderful family, friends, neighbors and co-workers for all the positive vibrations, prayers, love and support. We could not get through this without all that you have done for us and are eternally grateful. Much love & respect.

DIAGNOSIS

2008-08-09T07:37:00.000-07:00

Rogan began to limp....which, in a few days, progressed to her not wanting to walk at all. When nothing showed on the X-Rays we went to Primary Children's Hospital on Saturday 8/2, for answers. She showed no other symptoms of illness. Blood work came back and her counts were off...indicating the possibility of some form of Cancer. Rogan has never been ill or been to the hospital for any reason...needless to say, the environment, staff and administered procedures during our first 24 hours, were NOT well received. That first night an IV was placed in her foot, her vitals were monitored every 4 hours and blood was drawn from her arms 3 different times. I'd like to commend the nurse who was on that night...he had the magical ability to strike the vein on the first try, each time despite her chubby arms and her resistance [she is strong]. Unfortunately, the nurse who was on the following day did not have the same magic touch and I was forced to make an executive decision and "re-staff". Sunday AM was spent recovering and that afternoon Rogan was forced to go NPO [fasting...not well received either] in hopes that she would go into surgery. They could not get her in, so she was able to eat that night and Monday AM was spent NPO again. She went in for surgery at 12:30 PM...and they were able to get the work done in 1 hour & 30 min:

1.) Bone Marrow Aspiration & Biopsy: a special Biopsy needle inserted in her hip, though the bone and into the marrow [a sample of marrow is pulled and analyzed to measure the Leukemic "blast" cells and achieve a "base-line" for the disease. The "blast" cells have "crowded-out" her marrow, prohibiting the production of the "good" blood cells and causing bone pain...which is why she is not walking.]

2.) Central Nervous System [CNS] Prophylaxis: basically a "spinal tap" or we prefer "back poke". Test spinal fluid for Cancer cells [it was clear]....and also treat the spinal fluid with a Chemo injection.

3.) Indwelling Catheter [Broviac]: a special tubing inserted into a large vein in the upper chest. The catheter is tunneled under the skin of the chest to keep it firmly in place. The external end of the catheter can be used to administer medications, fluids or blood products or to withdraw blood samples. The catheter must be flushed and filled each day [to prevent clotting]...and the dressing must be changed once a week to prevent infection. The dressing is an airtight adhesive and is painful & traumatic on both Rogan & Dad to remove and clean. No swimming : (

Rogan came out of surgery and was fine....within 2 hours she was relatively happy, eating ice [new obsession] and watching Elmo in Grouchland [another new obsession].

For the next 4 days we stayed in her hospital room and did the following in order of frequency:

1.) cared for her and became educated on her illness

2.) watched Elmo in Grouchland

Big thank you to all of our family and friends for the love and support. I am not a "blogger", Oncologist or Hematologist....but I am becoming proficient at all 3....so stand by and please send us positive vibrations.