On talking to Crosby about CF

Lance and I have been talking to Crosby about CF. Nothing too heavy, just explaining why he takes enzymes, does the vest or stays away from germy kids. We have two books about CF, one from our CF care center about a little girl named Patti who has CF ("Who I Am!") and another by CFer Jerry Cahill, "You Cannot Fail" (available here through the Boomer Esiason Foundation).

On his own, Crosby refers to CF as "sixty-five-rosis". He has been able to say the word "emzymes" (for "enzymes") since he was 18 months old. It is interesting now to witness how, as his cognition has matured, he relates back to the things we've been talking about all along and what those books that he's read over and over say. He is learning little by little what CF is and that not everyone has it.

Last Friday afternoon, it was gorgeous out and I took Crosby to the playground of his choice (the one with the pirate ship!). Crosby was playing and having a great time. After a bit, he took a break and sat by me on the bench to drink some water. He crawled in my lap and put his head on my shoulder. I could tell he was watching the other kids. Then, he looked up at me:

Crosby: Mommy, how old are you?

(I knew where this was coming from. I had overheard a little boy earlier ask Crosby how old he was. Crosby said "I'm 3" and the little boy answered "well, I'm 5, so I'm older than you.")

Me: Well, I'm 36 (...no use lying to your own child about your age, right?)

Crosby: How old is Daddy?

Me: Daddy is 35.

Crosby: I'm 3. And I have sixty-five-rosis. (long pause) Mommy, do you have sixty-five-rosis?

Me: No, I don't. But you're right. You do have cystic fibrosis.

Crosby: Does Daddy have sixty-five-rosis?

Me: No, Daddy doesn't have cystic fibrosis.

Crosby: (looking around at all the kids on the playground and says very matter-of-factly) All the kids have sixty-five-rosis.

Me: (long pause, swallow lump in my throat) No baby, they don't. Most kids don't have cystic fibrosis. But you do.

Crosby: I have sixty-five-rosis and I take enzymes. (Jumps off my lap). I wanna go climb the clubhouse. 

Me: (puts on my sunglasses so no one else can see that I'm crying).

One of the things that I worry about is how much and when to tell Crosby information about CF and how to foster the fortitude he will need to face his disease head on. Sometimes I look at my sweet innocent boy and imagine all that he will have to face because of cystic fibrosis and it's just almost too much to bear. He is so young and yet there is a hideous monster lurking in the shadows waiting to rob him of so much. That monster is the truth and the truth is he has a genetic disease that is life-shortening.

As I was reminded this morning by another CF Mom, that truth is changing. The Cystic Fibrosis Foundation is the BEST story in medicine today. Seriously, if you have not read about the amazing advances the Foundation's investment in research has done and is currently doing for cystic fibrosis patients, you need to check it out by clicking here. The Foundation has vowed to continue their momentum in pursuit of a cure until all people with CF have the transformative therapies they need.

Please support the CF Foundation. You can join our Great Strides team or make a donation by clicking on our fundraising page: http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=58281&pg=team&fr_id=5918

-Carmen

Great Strides 2016

HELLO FAMILY, FRIENDS AND FANS!

(It has been so long since I have blogged, I had almost forgotten the website and password to The Crosby Show. Which is shameful, because we were so grateful to all of the support we received!)

The Crosby Show was THE TOP FUNDRAISING team this year with over $11,000.00. We were so excited. We had 71 people come out to support us and many more "spirit walkers" who donated.

THANK YOU, THANK YOU, THANK YOU!!

Before I post the pics from this years walk, I did want tell you that Lance and I will be chairing the 2017 Great Strides!!! Registration is now open, so save the date of MAY 20, 2017 and register here:
GREAT STRIDES - THE CROSBY SHOW

THE CROSBY SHOW TEAM  - WALKING TOWARDS FREEDOM FROM CF

The Aclin Crew

Aunt Natalie and Baby Ford

These two set up an awesome Give-Back night at American Pie Pizza (pictured below in 2 pics)! Thank you Hallie and Josh!

As my friend Misty said, "Follow those pants!"

THE PARKERS

Heidi and Miss Gray

Misty and Keith's kiddos: Audie and Vada (and friend)

So happy my 501 Crossfit crew came to support us!

Tokarz crew from 501 Crossfit

501 Crossfit's Leader Rusty and Eli

Dana, Seth and Dean!!

Kathleen, Sammy, Robert and Kelly (some of the Lochridge Clan)

The next set of pics are from the awards ceremony where The Crosby Show was recognized as the Top Fundraising Team and the torch was passed from Haskell Anderson (we bow down to the thee!), the chair of the Walk for the past 14 years to Lance and I! Also pictured is Amanda Hodge. Amanda was an integral part of the Foundation, a dear friend, and really just a super special person. She's moved on to another adventure but we appreciate all she did for the Foundation and for our family. Amanda, we love, we'll miss... don't forget about us!!!

Lance and I are really excited about Great Strides 2017 and we hope to see you there. Our little FIGHTER thanks everyone for all the support.

For past Walk re-caps (see below)
Great Strides 2014
Great Strides 2015

Team Crosby Show - Freedom from CF

Dear Family, Friends and Fans of The Crosby Show,

Have you signed up to join The Crosby Show at the Great Strides Walk benefiting the Cystic Fibrosis Foundation on Saturday, May 21st?

To register or simply show your support for our team, please follow this link:

Great Strides - The Crosby Show

The Crosby Show Team theme for Great Strides is "FREEDOM FROM CF" because we are walking for cure in hope that one day, we will all be "free" from this devastating illness. So grab your best 'Murica outfit, sign up today, and join The Crosby Show!!!

Saturday, May 21st at 8:00AM

The Little Rock ZOO

Great Strides - Cystic Fibrosis Foundation

As parents of a child with a devastating disease like Cystic Fibrosis, we feel a duty and responsibility to fight this disease with everything in our power. 

It is not easy to call, write and email people, asking them to donate, walk with us and show their support. I don't like to do it, but it pales in comparison to all that Crosby and other CFers have to do in a day that they don't like.

Crosby looks like a normal, healthy 2 year old. What most of you don't see is the hours that we spend on a daily basis administering medications and doing different therapies. You don't see him fight and cry twice a day every day when we have to force him to stop playing in order to do his Vest treatment to keep his lungs clear. Instead of visiting with friends for cookouts and birthday parties, we stay home to avoid exposure to germs. 

People always ask me what they can do to help. What we need the most is a cure for CF. I don't want Crosby to have to face what this disease can do as he gets older.

I'm asking for your support this year as we walk for a cure. 

I'm asking you to sign up to walk with us and to share our story and fund raise with us. 

I'm asking for you to help us find the cure for Cystic Fibrosis - FREEDOM!

The walk in Little Rock this year is Saturday, May 21 at 8:00 am.  Ask your neighbors and friends if they will support you in supporting us. Raising money to support the search for a cure is the only way that we will get what we want - a life free from Cystic Fibrosis.

Make sure you register under team The Crosby Show. I will support you however I can in your fundraising efforts. 

If you are unable to join us in our fundraising this year but want to make a donation, you can do so by visiting our Great Strides Page. We truly appreciate you taking time time to read this note and any and all support that you can offer.

Love,

Carmen

CF Diagnosis

Last year, the Arkansas Children's Hospital Cystic Fibrosis Center Coordinator contacted me about participating in a video that could be shown to parents after they receive a positive newborn screening for CF. 

As background, newborn screening is a nationwide program to find babies born with certain health conditions, including cystic fibrosis. The Cystic Fibrosis Foundation was instrumental in passing legislation in all 50 states to screen newborns for CF, because early treatment may prevent serious, lifelong problems. If you have a baby in Arkansas in a hospital, they will be heel pricked and screened for 28 serious genetic diseases before you are discharged.

A positive newborn screening result indicates that a baby might have CF and that further testing through a sweat test is required in order to rule out or confirm an actual diagnosis. 

By diagnosing CF early, CF health care providers can help parents learn ways to keep their child as healthy as possible and delay or prevent health problems related to CF. Early diagnosis and treatment can improve growth, help keep lungs healthy, reduce hospital stays, and years to life.

While we are extremely grateful for the newborn screening that ultimately led to Crosby's diagnosis at 15 days old, it wasn't easy to receive news that your baby has a potentially fatal genetic disease. The team at ACH and the Cystic Fibrosis Foundation have procedures, programs and information in place to help parents like us.

I wasn't able to participate in the video because of a work conflict, but Lance did. I think the video is fabulous and truly give an accurate picture about what parents of newly diagnosed CF babies experience. And, I think Lance was terrific!

Check it out!

(If you are viewing this on your phone or in an email, the video clips may not appear. The links are below).

The next video goes into a lot of detail on the actual sweat test. Feel free to watch the whole thing, Lance's portion starts at the 8:15 mark.

https://www.youtube.com/watch?v=gZzCQ3ux_vE

https://www.youtube.com/watch?v=CYx4grpGil0    

The CF Foundation has made amazing breakthroughs in research and treatment development in the past 5 years. I am confident that in Crosby's lifetime there will be a CURE for CF. We are on a crusade to raise money for the foundation in their pursuit for a cure, so that one day, no parent will feel the devastation Lance and I felt on October 3, 2013. If you want to help, please consider donating or joining our Great Strides Walk for CF here: 

http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

Love,

Carmen

Support CFF

Turn your face to the sun

And the shadows fall behind you.

{Maori Proverb}

Cystic Fibrosis is definitely an ever present shadow in our lives. When I think about the darkness that comes with the diagnosis, the "terminal illness" classification, all of the complications, all of the struggles, all of the doctor visits, medications, isolation, all of the CFers out there that suffer and struggle, those that have lost their battle, I can get overwhelmed in sadness and lost in the shadows.

Acceptance took some time, and while CF is always there, like an ever-present black cloud, we choose to turn towards hope. Hope for more tomorrows. Hope for a cure. 

I cannot say enough about what the Cystic Fibrosis Foundation has done for our family in providing hope for Crosby's future. Knowing what the CF Foundation does in the fight against CF, including accomplishments in research, care, advocacy and fundraising to fuel its lifesaving mission, has been a ray of sunshine since facing Crosby's diagnosis. Did you know that every medication and treatment that Crosby has taken or currently takes was developed by the CF Foundation from private donations like yours?! And there is so much more in the pipeline, but the Foundation relies on our support to fund research and development for treatments and one day, A CURE!

We hope you will join The Crosby Show this year at the Little Rock Great Strides Walk benefiting the Cystic Fibrosis Foundation!

When: MAY 21, 2016

Walk: 8:00AM

Where: Little Rock Zoe

You can join our team by clicking this link and signing up:

http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

I love the photo above of Crosby with the sunlight on his face and the shadows behind him. He catches the sun, but he doesn't know he's the light of my life.

Thank you for your support friends. See you on May 21st?!?!

Love,

Carmen, Lance and Crosby

Christmas and Great Strides

The Cystic Fibrosis Foundation's largest fundraiser, Great Strides, is in Little Rock on May 21, 2016 this year. SAVE THE DATE. 

Please join the Crosby Show team by clicking ---> http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

By registering and donating you will be giving Crosby the best gift he could receive - hope for more tomorrows!

I have talked about Cystic Fibrosis being called an "orphan disease" because so few people have it. This means that the value to pharmaceutical companies to invest money in new therapies and treatments just isn't there. Developing a single new drug can cost a billion dollars, so pharmaceutical companies want to create blockbusters for common diseases to maximize the return on their investment.

The Cystic Fibrosis Foundation came up with something called "Venture Philanthropy", where they invest our fund-raised money with the pharmaceutical company to do the research and create the drug, absorbing the early financial risk involved in drug development as a way to entice for-profit companies to get involved in cystic fibrosis research. Amazing things are happening. There are now two drugs on the market, Kalydeco and Orkambi, that target the underlying cause of CF for about 54% of the CF population.  Because of this successful business partnership, the CF Foundation has invested another $75 million toward finding a cure for the other 46% of the CF population. 

Although Crosby does not benefit directly from the use of Kalydeco or Orkambi because of his specific gene mutations, the picture is much brighter as we learn more of the significant impact both drugs have on those who do benefit from them and the science behind the breakthrough represents far greater confidence and progress than we have seen to date..  We know we are close and we are committed to running through the finish line…and then throwing the greatest party of all time! 

I have asked God many time to take CF away from Crosby. But I also ask for His will to be done, not mine. Despite the devastation of this disease, we know that God has a plan for Crosby and our family. We are thankful for the medicines and medical advances made each year in large part by those who support the CF Foundation through fundraisers like the Great Strides walks. 

Lance and I are so thankful for all our friends and family in joining our journey of faith and fight against this disease. We have some exciting things planned for fundraising in 2016!

Join the Crosby Show's Great Strides team today, for this guy:

With all my love,

Carmen

2015 Xtreme Hike

The Cystic Fibrosis Foundation's Xtreme Hike program came to Arkansas this year and took hikers through the beautiful Petit Jean State Park to raise funds and awareness for cystic fibrosis. 

This was the first year for the Arkansas Chapter's Xtreme Hike. It is a pledge based fundraiser and the weekend's events were hosted at the Winthrop Rockefeller Institute. 

Lance and his brother Scott are participated in the hike and Uncle Cot and Aunt Rara were co-chairs of the event.

The hike ended up being 17.3 miles total and took the hikers all through Petit Jean mountain. Crosby and I went up for the weekend too and we even got a 3 miler in and met up with the hikers at Cedar Falls. 

This was a fabulous event held by the Foundation and I am so grateful to Scott, Tara, Amanda, Misti, Melody and all the volunteers that helped make it such a success!! 

I don't know how much the event raised in all, but I do know that the Crosby Show team raised over $8,000.00! Thank you to all our fans and supporters!!!

Amanda from the Foundation kicking off the weekend!

All the hikers!

Crosby and I at the start of the Cedar Falls trail. It's about a 3 mile hike round trip. I was trying to meet up with hikers at the falls.

30 pound sack of sugar on my back! It was a workout.

We were able to meet up with Daddy and the hikers!

17 miles later... Finished!

 

What a wonderful way to support the Cystic Fibrosis Foundation!

We have one more event this year. The Breath of Life Gala is on Saturday, October 17th. The evening includes a live and silent auction, cocktail hour and plated dinner, and live music. The Gala welcomes nearly 400 guests and funds raised help support the foundation's research and patient assistance and care programs.

Lance and I will be attending. If you would like to join us, tickets can be purchased here:

https://arkansasbreathoflifegala15.eventscff.org/

Thank you to everyone who supports The Crosby Show.

Love,

Carmen