MAKE-A-WISH Utah. Thank you.

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

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

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

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

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

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

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.