Wednesday, November 18, 2009
Monday, November 2, 2009
Tuesday, October 27, 2009
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.
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.
Friday, September 18, 2009
.. 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!
Friday, July 24, 2009
... 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.
Tuesday, July 14, 2009
Wednesday, June 17, 2009
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.
Monday, June 1, 2009
Monday, March 23, 2009
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.
Thank you for following Go Rogan.