Blowing away CF!

I can't believe I never got on here to talk about the Great Strides team our family made this year! The walk was last weekend, and such an awesome experience. It was our families first time being apart of this since us kids were little. Cortney and I were determined to make it happen this year, so we formed a Houston Family team and we started raising money! For those of you who don't know much about the Great Strides program here is a little info: Great Strides is the CFF's largest and most successful national fundraiser, 90cents of every dollar raised is used in vital CF programs to support research, care and education! It's thanks to generous donors to Great Strides that fund new treatments and drugs that help our family live a long, more normal life. Our team decided to start off small this year since it was our first year, but we exceeded every goal we made! We raised over $1000 & had a bigger group then we expected there to walk with us. I wasn't able to stay the whole walk sadly, so I'm really looking forward to next year. Seeing all the love and support from family and friends is incredible! Heck those who walked with us were willing to get up and going on a Saturday morning at 7:30 am.... If that's not love I don't know what is!

A rock group that put on concerts to raise money for the walk


News 5 guy talking before the stretches and walk!
Ain't that the truth!
Walking time with my Daddy

A little bit of this. A little bit of that.

Hello blogging world! I feel like I've been gone forever.... Life has been so busy these last few months. I had a kidney infection, we spent spring break in Idaho with my Grandparents, Easter was spent with LOTS of family, I turned 21, my best friend that lives in Reno showed at my front door for a birthday surprise, My cousin got married,I babysat for my aunt while she was on a cruise for a week, we had our Great Strides walk, I just took my Praxis, and now it's the last day of school then finals. I don't have much time to write today, so until later I will leave you guys with some pictures from Spring Break!

Tastee Treet just happens to be the best soft serve in Idaho!
If you ever find yourself in Pocatello you must stop there.

The area just on the other side of my Grandparents neighborhood
Pocatello is one of the prettiest places, even in the winter!

It snowed the morning we left... I was so sad to leave it.

Saying bye! I'm rockin the coolest outfit (:

Spring and Cortney at Butterburrs for dinner after a windy day up at BYU-I!

We brought my Grandparents home with us...
It was a very tight 9 hour drive home, but worth it!

Easter Sunday before church! My family is amazing.

There were SOOOO many Easter eggs for the kids at dinner.

Luke Bryan & the Freemont Street Experience

So the ACM awards were this weekend so of course Las Vegas had TONS of stuff going on down town in honor of the awards and all the country fans in town! All weekend there were free concerts down on Fremont Street, just to name a few: Scotty McCreery, Eli Young Band, Eric Church and Mr. Luke Bryan!! I'm pretty much in love with Luke Bryan so of course we headed down there Friday night, even though I was unsuccessful at winning VIP bracelets from the radio. How can you pass up a free concert with one of your favorite country stars?!

Man am I glad I went, it was such an awesome night! Luke Bryan puts on such a fun show and it wasn't in a giant stadium where the only tickets you can afford are the ones way up in the nose bleeds. It was just down on one of the Fremont Street Experience stages. Not only is Luke a great song writer and singer, he's VERY handsome and absolutely hilarious! After going through some of his most popular songs he sat down at the piano and told us how terrible he is at the piano (so not true!), but he loves to hear his fans sing so he played an Adele's song! After that he went into a rap melody with some Wiz Khalifa and Ying Yang twins song, to the wall. He did a bit of some Classic Alabama and to warm us up before he played Country Girl abd we all started "shakin it" he had his bass player play Baby Got Back! He cracked jokes, did some booty shakin and shared his whiskey with a few of the ppl up front. It was such a fun night, even if I did get beer spilled on my boots and my favorite song recorded blurry. I'd love to one day go down south to one of his Farm Tours, which are shows he does in small towns down south and puts on an awesome show in the middle of a field! I could seriously listen to his Georgia Twang ALL day long.... Thank you Fremont Street for putting on free concerts!! That will always be the best part of living in vegas. I have a million pictures and videos but I'll spare you and only share a few of my favorites (:

Freemont Street 3rd Street stage! You know it's a
country show by all the cowboy hats out there... it's my kind of party (:

My love, Mr. Luke Bryan himself!!

Tiffany and I partyin country style! There were sooo many ppl there.

Out of all the ppl there we ran into Ashtyn and Kaeli! Fancy that.

At the end of the show! You know it's a country band when
there's a fiddle and an occasional bango!

and here are just a couple of the videos I recorded from the show!

 

Tied for number 1 for my favorites with Drunk on You!

Luke playing and singing Someone like you by Adele!

The Joker and a little Alabama's song of the south.

Happy Birthday to ME!!!

On March 8, 1991 Brianne Lacellous (ME) was born into this word! Last week I turned 21 & can't believe it... It sounds so weird saying out loud. I wonder how long it'll take me to get use to being in the 20's?! Anywhoooo for my birthday I thought, Huh maybe it'd be cool to write down 11 things about me right now so later down the road I can look back & either be very proud of myself for being totally awesome at 21 or think"oh Brianne if only you knew...."

1. I tried fried pickles for the first time & feel in love!
2. I'm currently in a German class that is kicking my BUTT! but the real kicker is that I took german cause I didn't wanna take communications.
3. I drive a 1999 Ford Escort named Kim Possible with over 130,000 miles on it, but I love her! She's good on gas & gets me places.
4. I'm serving as FHE instructor in my singles ward.
5. This is my 3rd year in college.
6. WolfPack football is the best time of the year!
7. Even though I say I like ALL music, country is my favorite.
8. Swamp People is my guilty plessure when it comes to TV.
9. My family is my world, but my best friends come in a close second!
10. My favorite vacation destination is Idaho to visit my Grandparents, Spring & Shan! & of course that counts hitting Utah on our way up.
11. Jeans are the enemy! If I don't have to wear them they won't be on. It's either sweats or shorts all day er day.

The "Birthday Ballon Fairy" stopped by while I was
at school on Thursday! My Mom really is THE best!
A card from my sister I woke up to sitting outside my door
the morning of my birtday. She's such a sweetheart!
Good ole me on the day of my birthday!

Here's to 21 amazing year & looking forward to 21 more!

This time last year....

This time last year I was 2 days into a hospital admission in Reno. My very first without my parents. With blue lips when I coughed & blue finger nails from my 86% oxygen sats and scared to death being in a HUGE foreign hospital.

This time last year my PFT's (lung function) were below 30% & I was sicker then I'd ever been before. I was on continues oxygen & hoping that my Mom would be able to find a way up to Reno to be with me.

This time last year my amazing social worker & Disablities Resource Center advisor were helping me let my teachers know I wouldn't be there for midterms, reminding me that this was out of my control & that if I need to withdraw from the semester they'd be there to help me through the process, every step of the way.

Today my PFT's are up 24%, higher than they've been in years! Today I made the deans list for my 3.5 gpa at UNLV!

& Today I wanted to express my gratitude to all those that were there for me this past year. I'm so grateful for the health I've been blessed with & all those that supported me as I worked harder then ever!

* My WONDERFUL roommates & 2 of my best friends that helped in every way they could. Who took time out of work & midterms to visit me in the hospital & who never once complained about taking me to doctors appointments, hospitals & about all my medications taking up the fridge space.

* The support from the CF community has been more of a blessing then I could of ever imagnied it would be when I first joined Cystic Life, with people that know what you're going through things don't seem quit as tough.

* I've been blessed with the most amazing family. The support & love they've showed me surpasses all! I had family friends call & check up on me, I had aunts & uncles pull together money to get my Mom a plane ticket up to Reno. My mom never once leaving the hospital & pulling my oxygen along as we went on walks through the hospial & I had cousins skyping me.... even from the bathtub, you know who you are ;)

* I am also so gratful to my social worker, Daniel who did so much for me, trying to make my load lighter & for my doctor here in vegas who never once gave up on me this last year as we struggled to figure out what was causing all these problems & who talked to me about what he wanted to do, but always listned to my concerns & opinions. My doctor, who never once stopped fighting till we got me back up to base line, when many others at the CF office seemed to have given up.

Thank you to everyone who has cheered me on & helped get me to where I am today! I love my life & wouldn't trade it, or anyone in it, for the world!

A pictures worth a 1000 words.

I wanted to share a few pictures that my friend & fellow CFer took to raise awareness of Cystic Fibrosis and organ donations. They are such powerful breath taking pictures. It helps that Kari is absolutely beautiful inside & out!!

* All pictures taken by Trish Laver Photography.
Check out her facebook page (:

The Wonder Drug!

So I'm crazy late about getting this blogged, but don't worry I shared it on facebook! Blogging takes way more effort then facebook. Anywho, for those who live under a rock & haven't heard, Vertex's new drug Kalydeco was finally approved & even earlier then planned!! This is the first drug of its kind to treat the underlying cause of CF & not just the symptoms! Which means it'll help the faulty cells do what they are suppose to. The trials showed amazing results, which is why it was fast tracked through the FDA. People on the drug during the trials showed increases in there PFT's up 10% or more & found themselves spending less time in hospitals. One girl who was on the trial said she's run 3 5k since being on it.... How amazing is that?!

Unfortunately Kalydeco is only for a VERY small portion (4%) of those with Cystic Fibrosis. This drug is targeted at treating those with the gene mutation G551D. Us 3 kids are all double Df508, but that does not stop me from celebrating!! I have two amazing friends that should have this drug within the next couple months!! Of course nobody knows if this will work as it did in trials, or on everybody the same but seriously this is a HUGE step in the CF community & we couldn't of done it without all the millions of dollars donated from people like you. Thank you can't even begin to explain my appreciation to all those who give time & money to the CF Foundation!

One of my best friends sent me picture mail the morning the FDA approval was announced with a picture of CFF's facebook page announcing the approval asking me if this was good news for me... I was so touched to see how much he cared & how in the know he was. Like I mentioned before I don't have the right gene mutation for this drug in particular, but don't worry!! Vertex is in a phase 2 trial of the drug that will treat my DF508 mutation, which is the most common mutation out there. This drug is VX-809/Kalydeco. They are mixing these 2 drugs together hoping to get the same effect as this one that was just approved. I've never felt so much hope & excitement in my life before. If I can stay where I am CF wise & if Vertex gets the promising results their hoping for, my life may completely change!