26 November 2014

Guest Speaker @ Cystic Fibrosis Foundation Event, Shreveport, La. 2014

Recently, I had the privilege of being the guest speaker at a Cystic Fibrosis Foundation event in Shreveport, Louisiana.  I grew up in a little town outside of Shreveport so it was such a gift to be asked to come back to my home state, where my heart will always be, to help raise money for Cystic Fibrosis research.

The annual event, called "The Finest," pays tribute to business professionals in the Shreveport/Bossier area who are up and coming within the community.  Each honoree takes on the role of finding a cure for Cystic Fibrosis by raising critical funds for research.  This year there were six honorees recognized.

The reception honoring Shreveport/Bossier's Finest was held on November 13, 2014 in the Ballroom in the El Dorado Hotel and Casino and included food/drinks, live entertainment (provided by Stilettos, a very talented local band) and a silent auction.  The event was MC'ed by radio personality Robert J. Wright, a local radio DJ I listened to when I was growing up so it was pretty surreal to have him give of his time and efforts to help find a cure for my son.  He's a great guy in person!  S3 Pump Service, as shown on the sign behind the band, was the event's title sponsor.  They cannot be thanked enough for their support in making this year's event successful!!

Each table at the event was decorated with pictures of my brave little one.  This particular picture of Bennett is when he was getting his throat culture, as he does at each checkup, at his Cystic Fibrosis Clinic appointment.  A throat culture tells us what bacteria might be hiding in his lungs. 

After the "Finest" event, which Bennett did not attend, I gave Bennett a gold paint pen and these pictures so that he could write his name to say thanks to those who made this night possible.  I was surprised how well Bennett can now write his name and how much he wanted to do it over and over again.  Bennett seemed to understand he was participating in thanking people for helping us find a cure for CF.   In fact, he seemed very proud of himself for being so useful.  At one point, Oliver noticed what Bennett was doing and asked if he, too, could use the gold paint pen.  Before I could answer, Bennett looked up from his work and confidently, knowing the answer, asked Oliver, "Now, Oliver do YOU have Cystic Fibrosis??"  It was clear that Bennett found his writing thank you notes to be a privilege and one that he felt very special getting to do.  He wasn't very interested in sharing the opportunity with his brother.  I loved that he is beginning to see some perks to his disease. :)

I wanted to share the six honorees who helped us raise more than $52,000 for a cure for Cystic Fibrosis:

This is honoree, Cory Boyett, who works for Boyett Printing, accepted his award from Brandi Jones, in blue, the Development Director of the Cystic Fibrosis Foundation's Shreveport branch.  Corey started an email campaign to friends and family asking for them to help him raise money for a cure for Cystic Fibrosis.

Honoree Hillary George, who works for Bulldog Oilfield Services, raised money by sharing with everyone she knows the need to raise money for a cure for CF.  CF doesn't give us a break and Hillary did not take one, either.  She was even busy raising money for Cystic Fibrosis research at our children's practices.  What a gift it is that another mother would do that for my child, even if she didn't know that's who she was doing it for.

Dr. Jennifer Lee of Lee Family Medicine Clinic in Sibley, Louisiana sold t-shirts to help raise money for Cystic Fibrosis.  Dr. Lee has a cousin with CF so she has a personal connection to the disease and finding a cure.

Britney McDow, realtor with Diamond Realty and Associates, raffled off beautiful diamond earrings to raise money for the Cystic Fibrosis Foundation.  I had the privilege of drawing the name of the person who won the earrings that evening.  I can't remember who it was but it was a guy.  He's gonna make some lady very happy!

Vice President of Minden Bank and Loan, Hugh Wood, helped raised money for CF research.  I actually brought Hugh to my senior prom.  Never did I ever think at my senior prom, my date that night might one day volunteer to raise money for a cure for my son.  But I am so thankful he did.  

Nichole Scates, Vice President of S3 Pump Service, went above and beyond to raise money for a cure for CF. This girl is simply amazing and a heart of gold!!

This is Hugh and his wife, Lucia.  They have two adorable little girls my boys age.  

Dr. Jennifer Lee and her husband Jeff, both are such great people.  They also have two little girls.

I am so appreciative to my dear friends Clint and Jessica who came out the day before their 16th anniversary to help us raise money for a cure and to celebrate all that we are working towards with regards to extending Bennett's life expectancy.  Clint and Jessica have a two children, including daughter who shows two rare mutations for Cystic Fibrosis but she is asymptomatic. The doctors call it CF related metabolic syndrome.  They feel very blessed not to have to life with CF day in and day out, but they also live with the anxiety that the doctors are unsure how Bella's mutations will affect her in the future.  So, they have a very special place in their heart for finding a cure for CF.

Andrea, Bill and Candy

Hillary and some of her great supportive friends!

Casey and his wife Sarah, who I wrote about in an earlier blog post, came to the event, which was such fun for me as I had looked very forward to thanking them in person for all their support and love for our Bennett.

One of my best friends from childhood Kyla (we grew up down the street from each other) and her husband Michael came out the event.  Kyla, mother of twin girls, is a pharmacist so I enjoyed talking to her about our relationship with our local pharmacy.  Cystic Fibrosis has us at our local pharmacy practically weekly!

I was very honored to have my youngest brother Barrett and mother Cindy with the event with me.  It's special to be able to go home and share our need for a cure.  It's even more special to have my family by my side.

Thank you Brandi (organizer of this fabulous event) and Amy (Executive Director of the Dallas Chapter of the Cystic Fibrosis Foundation) for all you do day in and day out to help us raise money for a cure for our son and all those with Cystic Fibrosis!!

23 November 2014

Oliver's 7th Birthday Party

Oliver, who turned 7 years old in November, asked for a "body-themed" birthday party this year.   At first, I thought he was merely talking about a science-themed birthday party...but I quickly learned that, no, he was specifically asking for a "body-themed" birthday party! 

We're pretty confident that the reason Oliver finds the body very interesting is because of his experience with Cystic Fibrosis.  From the moment Bennett was born, we have been talking to Oliver about how bodies work - how some work correctly and some do not.  We regularly talk about Bennett's medicines work in his body to combat damage in Bennett's lungs and his pancreas.  Oliver, our science-lover, seems to particularly embrace opportunities to learn about the body.  We think this helps him feel more confident about the uncertainty that CF brings.

Jello petri-dishes with sprinkle "bacteria".

 Oliver's X-ray cake (found here:

Since Oliver's birthday was around Halloween, it was easy to find body-themed candy.

Edible Mouths with teeth made out of apples, peanut butter and marshmellows (found here:

On the topic of teeth, Oliver just lost his first front tooth right before his party. 

DNA pasta

This is one of the sweetest little skeletons I could find!  I was careful not to get gruesome, for Bennett's sake.  Oliver is beginning to enjoy things that are pretend scary.  But Bennett still gets scared of shadows.  So I was glad to find this sweet little skeleton guy (or, as Bennett calls it, "skell-i-on" guy). :)

I found this skull head at CVS in the Halloween section.  It was black and lit up for Halloween so I spray painted it white to look more like one you'd find in the lab.

The upside to having a body birthday party around Halloween was it was easy to find body-themed candy and toys.  The downside to having a party right after Halloween was they sold out of dry ice throughout the entire city right before our party. So, my intention to put dry ice in the beakers for the party ended up not happening.  Kids didn't seem to care.  He liked the food coloring just as well.

I found this neat little website that helps you spell out your name with the elements:

DNA made out of streamers - Oliver is fascinated by DNA, especially because we have talked about how Bennett's CF comes from mutated genes in his DNA.

White chocolate and pretzel bones (found here:

Fruit molecules (found here:  Literally, Brian was over in the kitchen cutting up fruit and making serious molecule models out of fruit.  I had no idea one could have such fun with fruit, toothpicks and their knowledge of microbiology.

Make a wish!

Oliver's party favors were bone candy, gummi brains and some kind of Halloween gooey thing inside a beaker candy.  

Who can resist chewing in to some gummi brains!? ...especially if you have a little zombie in you! :) 

Happy Birthday to our firstborn snaggled-toothed first-grade 7 year old!  We love you, Ollie-Bear!!

19 November 2014

Love of a brother

This is my friend Casey, his wife Sarah and their sweet baby girl, Lillian.  Casey is a huge supporter of the Cystic Fibrosis Foundation and of Bennett's fight against his disease.  This year alone he raised more than $750 for CF.  But I don't think it's necessarily how much he's raised on behalf of Bennett's Brigade that makes his story so touching.  I think it's why he does it:

Casey cares about Bennett.  But he is moved by Oliver.

  This is Casey with his big brother Sonny.  Casey and Sonny were very close growing up.

But shortly after Casey and I graduated high school, Casey lost his brother in a car accident.   

The reason Casey donates to help us find a cure find a cure for Bennett is because he knows what it's like to lose a brother and he never wants Oliver to know that feeling.

Just like Oliver and Bennett have a little sister, so also is there a little sister who joins Casey in missing their big brother.  Sonny, who would be 37 today, is sorely missed.

Casey honors Sonny's memory by helping others.  Casey headed up a softball tournament in Sonny's honor to raise money for a variety of non-profits for many years.  Bennett's Brigade/The Cystic Fibrosis Foundation has been the beneficiary of this softball tournament more than once.

Casey's gift of honoring his brother by helping to save our son is one of the most meaningful gifts anyone could give our family.

Recently, I had the special priviledge of getting to thank Casey and Sarah in person at a Cystic Fibrosis Event in Shreveport, Louisiana.  It was such a delight for me to be able to thank them in person and to share with Casey that his brother, Sonny, is and will forever a part of what we are doing for Bennett.