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