Symdeko, here we come!

Update: In January, Lance and I found out that Crosby is included in the group the FDA approved at the end of 2020 for the gene modulator Symdeko for certain rare CFTR mutations. We were in shock because while we have celebrated each and every drug approval, having rare mutations meant that up until now, Crosby was in the 10% of persons with CF that do not qualify for any of the ground-breaking drugs (Kaledeco, Orkambi, Symdeko, and Trikafta) that have been developed by the CF Foundation.

The new FDA approval only affected around 300 people and Crosby was one of them! If you have supported us through the Cystic Fibrosis Foundation in the past 7 years, THANK YOU. This is what we have been waiting for and your donations helped make this happen. With each drug approval, I would get emails or texts asking me if they benefited Crosby and I always had to say no, he was not included. But now, it’s HIS TURN.

The gene modulator medications for cystic fibrosis are hailed as the greatest story in medicine today! They are literally transforming a genetic disease. These drugs are not a treatment for the symptoms cystic fibrosis causes, but are actual protein CORRECTORS. It is not a cure, but it is as close as they have have ever gotten.  

To give a brief description on how it works, Crosby’s salt chlorides have never been able to come to his cells’ surfaces because they were blocked by two gene mutations that screw up the salt and water content in his body. This causes the mucus to thicken in his lungs and digestive system. Gene modulators help the chlorides to come to the surface and virtually correct this. If you want to learn more about how Symdeko works, here is a great video: https://www.symdeko.com/how-symdeko-works

While we are so excited for Crosby to be eligible for Symdeko, deciding to go ahead and have him take it was a tough decision. Since insurance was a 3-month battle, that left a lot of time to research and weigh out the choice. Reading over the good and the bad has caused a mix of emotions for me.

There are side effects: Abdominal cramping, elevated liver enzymes, and eye issues to name a few. One of my fears is that he won't be able to continue the medication because of these side effects. I don’t want Crosby to endure anymore pain in our pursuit of quality and quantity of life. He is not too happy about the required blood tests every 3 months to make sure his liver function is cooperating with the Symdeko. So I’m pretty anxious. This medicine will change his body at a cellular level to work in a way that it never has. That is a mighty decision to have make for someone else, and not one we've taken lightly. As his parents, we want to protect Crosby but also not keep him from something that could be beneficial for him.

All that said, we decided to start and I am excited to say that on May 1^st, the first day of Cystic Fibrosis Awareness Month, Crosby took his first dose of Symdeko.

These gene modulators are giving those with CF a new chance at life. I am so thankful these medicines were developed during his lifetime. We are hopeful that Crosby’s life will change for the better. The worries that I have had since the moment that he was diagnosed with CF have lessened. All the negative things I thought he would have to experience as he gets older might not be a possibility anymore. I feel new hope for him and everyone with CF.

The Cystic Fibrosis Foundation has promised that this is just the beginning. Kaledeco, Orkambi, Symdeko, and Trikafta will not be the last medical advancements for CF. Things can and will only get better.

I am so very grateful to Vertex, the Cystic Fibrosis Foundation and everyone who made it possible for Crosby to get Symdeko. My heart aches for the CF warriors who lost their lives to cystic fibrosis before they ever had a chance to take these medicines. I continue to hold on to hope for those who still aren’t eligible (even though the gap is narrowing.) My promise is that I will continue to fight for and support the CF Foundation until all people with CF have the transformative medicines they need… Until It’s Done!

Great Strides is on hold again for 2021 due to COVID-19 and needing to protect the CF community. BUT! We are still fundraising for the CF Foundation to keep the momentum going and you can visit our page here: THE CROSBY SHOW

Love,

Lance, Carmen, and Crosby

CF Awareness Month 2020

Every May, we celebrate Cystic Fibrosis Awareness month and pandemic or not, May 2020 will be no different! Last year, Lance, Crosby and I were honored to represent the CF community at the Arkansas Capitol where Senator Missy Irvin sponsored a resolution declaring May as Cystic Fibrosis Awareness month.

We encourage you to take the time this month to learn something you did not already know about CF or share what you do know about CF and your buddy Crosby with someone else.

As you have probably already guessed or heard, Great Strides is postponed due to COVID-19. The Arkansas Chapter of the CF Foundation has announced a new date for Little Rock Great Strides - October 3, 2020! Lance and I are choosing not to fundraise at this time, but please mark your calendars and plan to join us in October at the LR Zoo! 

Lance and I have had so many wonderful and thoughtful people reach out to us since the start of the pandemic – checking in, thinking about us, praying, etc. I cannot say thank you enough! This is an incredibly scary time - for everyone. But for those who have recognized the additional impact this has on a family with Cystic Fibrosis – thank you for seeing us and letting us know you have thought about us. It has meant so much. 

We have been asked (a lot) if we’re scared of the coronavirus. But the truth is, we have lived with the threat since Crosby was diagnosed with CF. Of course, the threat hasn’t always been COVID-19, but for the past 6.5 years we’ve had to take the same precautions that everyone else has just started taking the past 8 weeks. We wash our hands constantly, disinfect everything, social distance, avoid crowds, cancel trips and activities, and weigh every decision on what the impact could mean for Crosby’s health. When lock downs across the country first began, Lance and I both said how a lot of this reminds us of Crosby’s first year and how hard we worked to keep him isolated and give his lungs a chance to grow without being impacted by infection. 

So, have we been scared? Maybe a little. But that’s the life we live everyday having a child with CF. So many unknowns, so many rules and restrictions. Staying home when we want to go out, not having friends over, saying no when the tears in Crosby’s eyes are begging me to say yes. We have to approach every decision by thinking, are we doing the best that we can do? I don’t want something to happen and look back, regret a decision and then have to say, well I could’ve done better. When given the choice to follow the rules or potentially lose my Crosby, there really is no choice.  

I know we are all ready to get back to a more normal way of living. But as we start to go back to places and activities, please remember we need to still protect not only ourselves and families, but we also need to protect those most vulnerable. It may not mean much for you to get a virus, the flu or even a cold, but it could mean hospitalization, serious complications or even death for others. 

Please continue to take the time to wash your hands A LOT. Please stay home if you aren't feeling well and keep your kids home when they aren't well. And please please PLEASE wear a mask when you go out in public. Not because you are required to, but because of your love for your neighbor – the kind of love that God calls us to have for one another. Your mask protects others. Wearing a mask is simply just being considerate. No one is asking you to live this life forever. Please do the right thing. Remember, when this pandemic is over, social distancing and masks will still be the norm for some people:

Fear and Hope and Thank you

Fear.
I hate the word and what it represents for me.
There is a fear that has regularly stopped me in my tracks for the past 5+ years.

From the day Crosby was diagnosed with cystic fibrosis, I have had to live with the reality that one day, I may watch him lose his fight. The moment that I laid eyes on him, I could not fathom my life without him in it. And when he was 15 days old, I had to try and process the dark cloud of statistics that looms over a CF diagnosis. I have been forced to think about the fact that even if he is lucky enough to surpass his life expectancy, I may likely still spend countless days watching him suffer while I stand by, helpless. The statistics tell us that less than half of CF patients live into adulthood.

I think of all the pills taken and hours spent daily on treatments for Crosby to maintain health. I think of all that CF can bring as the disease progresses: CF related diabetes, feeding tubes, ports, bacteria cultures than can’t be fought off by antibiotics. I carry the heartbreaking reality that he will likely at times fight for his every breath. And it terrifies me to think about how he will process these things for himself mentally.

I am most scared that one day, he will be gone and I will be alone with regrets. I’m afraid I will regret I didn’t take more chances or make more sacrifices to make his wildest dreams come true. I’m afraid I will regret that more days and dollars were spent trying to do all we could to keep him healthy, rather than just spent living.

That same fear also manifests as guilt for even being fearful in the first place – because I do have hope! It is just that Crosby is my baby and it is so heartbreaking to not be able to take this burden from him. I know that CF or not, nothing is ever guaranteed in this life and the only way to live is not let the fear take hold and squeeze out the hope.

Thank you to everyone who hopes, prays and fights for a cure along beside us. As CF awareness month comes to an end, I’m reminded that we are not alone in our fears nor or in our hope. Thank you for for your support and thank you for loving Crosby.

Until. It’s. Done.

Carmen

Running for CF

Growing up, I always wanted to be good at sports. I played basketball, volleyball, tried gymnastics, and swam on the swim team.  I went to all the practices and worked on skills at home. At games and meets I would hustle and pour my heart into trying to do my best. But, I was never very good at any sport I tried. I really wanted to be good and while I consider myself somewhat athletic, I just wasn’t ever a good ball handler, very fast or particularly great at any sport I tried. 

I started running in college for fun and discovered that I loved it. Like most of my past sport endeavors, try as I might, I’m also not a very great runner. My PRs are not impressive and even though I’ve been running for the better part of 16 years, I never have and never will qualify for the Boston Marathon. The thing about running though, is you don’t have to be very good or very fast, you just have to do it! I’ve ran 5Ks and 10Ks, relays, half marathons, full marathon and even a triathlon. 

I like running and I like training and I love getting to do it with other people. Lance and I’s relationship began with running. Then we planned our entire wedding during runs together and we could usually talk and workout any problems on a run. Crosby joined us on our runs as soon as he could hold his head up and reached the minimum weight for the jogging stroller. We’ve ran races pushing Crosby and before he hit 35 pounds, he regularly hit the pavement with us.

The New York City Marathon is arguably the most popular marathon in the world. Most runners are selected to participate by lottery. You apply, pay and then leave it up to chance to find out if you get in. Lance and I said years ago we would love to do it together, but the odds of both winning the lottery the same year are not good. The other way into the NYC marathon is to run for a charity, so when we found out several years ago that the Cystic Fibrosis Foundation has a marathon team, we reached out and put our names on a long waiting list. Last January, we got the call.

So here we are in 2018 and the girl who was never very good at any sports is, God willing, going to get to run the New York City Marathon. Not only am I going to get to run it with Lance and some of our very closest friends by my side, but I’m going to get to run it in honor of Crosby, for the charity that is near and dear to my heart. I’m going to run 26.2 miles through New York City with Crosby’s name on my shirt and wearing a Cystic Fibrosis Foundation Breathe Team bib! I am nervous, I am excited and I am incredibly humbled that we get to do this!! This is a once in a lifetime opportunity and I am so very grateful.

Thank you to everyone who has supported us the past 6 months in our fundraising! Every single dollar donated goes directly to the Cystic Fibrosis Foundation. In order to run the marathon for a charity, you have to raise a minimum dollar amount for that charity. (Just so there is not confusion, the money does not go to the marathon itself or towards our trip to NYC ). Our collective goal we need to hit is $20,000! We have not reached that yet, but have two more fundraisers coming up:

Saturday, October 6th – Fish Fry Fundraiser

Good Ole’ Down Home Fish Fry with all the Fixins 

4:00 – 6:30 

11500 Willow Beach Road, NLR

Suggested Donation: $20.00 per plate

RSVP to 501-680-7090

and then:

Friday, October 12th – Poker Night

Hosted by The 1836 Club

$100 Buy in

Online donations can be made at www.crowdrise.com/thecrosbyshow

Thank you for your support! We won't stop fundraising for a cure... UNTIL IT'S DONE!

CF, a Starfish, and Great Strides

We are continuing our efforts to support Cystic Fibrosis Awareness Month!

You see this little boy right here?

This wonderful, happy, beautiful, little dude? He loves being outside, fruit, suckers, Mickey Mouse, and Minions. He has an impish grin and sweet spirit that melt just about everyone he meets. He is headstrong but has a heart of gold and all the charm you could imagine. He is naughty sometimes, but in my eyes, perfect and loved and he's more than I imagined when I was told I was going to be the momma of a boy. I do not have the words to express the joy he has put in my life.

But this boy, this one right here,

he has Cystic Fibrosis. CF is this evil genetic disease that attacks his lungs and digestive systems. 

Crosby was diagnosed with CF at 15 days old. Lance and I had hardly even ever heard of the disease, but technically, we gave it to him, genetically speaking and all. During those first couple of months, I was in this deep, dark sea of emotion. While navigating the challenges of being a first time mom and having a newborn, I was also trying to tackle and endure those endless chest therapy sessions, meds, nutrition, clinic appointments - all while absorbing a new diagnosis and it was a lot. 

We are three and half years in now, but there is still a deep lingering pain that settled into my mind, body and soul that fateful day. A pain that I would not wish upon anyone, ever. That pain exists because CF is ugly, gross, complicated, unfair and above all else, life shortening. There is no cure... (yet).

But you know what else has settled in me? An even deeper, unstoppable, indescribable mama bear force that cannot and will not allow me to give up. And that force is stronger than all that other stuff. I will not give up for Crosby. I will never stop fighting for him. And, I will not waiver in my support of the Cystic Fibrosis Foundation, which gives us the hope of more tomorrows!

As parents of a child with a devastating disease like Cystic Fibrosis, we feel a responsibility and drive 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 necessarily 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 3 year old. What most people 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. You don't see the 20+ pills a day he takes in order to by able to absorb nutrients from the food he eats.

People 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.

Please help us by donating to the Cystic Fibrosis Foundation in their research for longer, healthier lives for CF patients. No amount is too small! Seriously, it's not.

Remember the starfish story? The one about the old man who asked the young man why he was throwing the starfish that were stranded on the shore after a storm back into the ocean. And the boy said that if he didn't, they would die when the sun got too hot because they couldn't do it by themselves. And then the older man laughed and said that there must be thousands of starfish on the beach and told the young man he wouldn't be able to throw enough back to matter. Then, the young man picked up another starfish, threw it into the ocean and said: "it mattered to that one".

Every. Dollar. Counts. It matters to me. It matters to Crosby. And it matters to all of the CF patients and families that directly benefit from those dollars that go to research.

The Great Strides Walk in Little Rock this year is Saturday, May 20th at 8:00am.

Please consider donating to the Cystic Fibrosis Foundation and join our fight for A BRIGHT FUTURE WITH CF! 

http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=58281&pg=team&fr_id=5918

With all my love,

Carmen

Team Crosby Show - A Bright Future with CF

Dear Family, Friends and Fans of The Crosby Show,

Have you signed up to Join The Crosby Show for the Great Strides Walk on Saturday, May 20th at 8AM at the Little Rock Zoo?

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 "A BRIGHT FUTURE WITH CF" because we are walking for the BRIGHT FUTURES of those that suffer from Cystic Fibrosis. And those BRIGHT FUTURES are made possible by your support of the CF Foundation. So grab your neon attire, sign up today, and join The Crosby Show one month from today!!!

Saturday, May 20th at 8:00AM

The Little Rock ZOO

Great Strides - Cystic Fibrosis Foundation

May is National Cystic Fibrosis Awareness Month and during this month, the goal is to spread CF facts, inspiration, and hope! CF Awareness Month is all about education, lifting the veil to give you a behind-the-scenes view of  the invisible disease that is CF.

I have a lot of posts covering CF, so if you want to learn more, click here to see all my Cystic Fibrosis related posts. And here are some specific links below:

A Bad Word

An Orphan Disease

CF Facts

Genetics of CF

On Having a Baby with CF

CF Diagnosis

Orkambi

Bopping 

Kalydeco

CF @ 9 Months

CF Awareness Month is all about awareness, and we know that the next step after awareness is action—accelerating the pace of CF research to make breakthroughs and save lives. Consider making a donation, big or small, in honor of Cystic Fibrosis Awareness Month! 

Great Strides - The Crosby Show

Love,

Lance, Carmen and Crosby

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