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

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

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

CF Awareness Month

May is National Cystic Fibrosis Awareness Month!

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

Just like every CF patient's journey with the disease is different, every family's journey battling the disease and coping is different. Lance and I try very hard to live life as normally as possible. And, while I think we do a fairly good job, Cystic Fibrosis is always there in our minds, that ever-present thought that you just cannot ignore. 

We have been very thankful that we have kept Crosby healthy and his CF under control thus far. However, we know enough that we are fully aware that could change in an instant. Every virus, every exposure has us holding our breath, wondering how his body will handle it or what is next or when will the sky fall out. Hoping for the best, but preparing for the worst is a stressful place to be. 

For now I take solace in the fact that Crosby is too young to know what CF is or that he is different. For now, Lance and I carry that burden for him. But my heart aches for the day when he realizes that not everyone takes enzymes to be able digest their food and absorb nutrients. I hurt to think of the day he realizes that he is different from other kids and resentment that he will feel. My heart aches for the day he realizes that he has a disease that is classified as terminal and I have to explain mortality to my child. 

I have heard CF called the "Beautiful People" disease. Looking at Crosby, you would never know that he has the most common fatal genetic disease in the U.S. But Crosby is fighting it every day. We fight so that he will remain healthy. We fight so that he can live. 

CF is ugly. CF is inconvenient and exhausting. CF is unfair and hurtful. 

We need a cure.

Please consider donating to the Cystic Fibrosis Foundation and join our fight! 

Click below and join our Great Strides team by signing up for the walk or making a donation.

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

Love,

Carmen

P.S. In honor of Crosby and CF Awareness month, for the entire month of May, my friend Rachael over at Razzlewraps is donating $1 of the price from every wrap sold to the Cystic Fibrosis Foundation!!! Her baby head wraps are so unique and so cute and I am so very grateful she is supporting us in this way. Please check out her store here: http://razzlewraps.storenvy.com/ and follow her on IG here: https://www.instagram.com/razzlewraps/ They make fabulous baby gifts!

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

Derby Time

Save the Date for the Second Annual Team Bass Home Run Derby!

You may remember from last year that Lance and I hosted a Home Run Derby during his softball tournament to raise money for the Cystic Fibrosis Foundation. Well, we are doing it again this year, with a couple of changes!

The CELEBRITY HOME RUN DERBY is on Thursday, August 6th at 7PM. This is the event that all of The Crosby Show fans need to plan on coming to. We have convinced a group of local celebs to come bat and raise money for CF. The event will be at Reservoir Park in Little Rock and is free, with a suggested donation of $5. We will have cold drinks for sale too! Every dollar raised will go directly to the Arkansas Chapter of the CF Foundation. 

The celebrity participants include:

Dustin Moseley 

Jay Sawatski 

Coach Johnny Rice

Steve "Wildman" Wilson

JJ Meadors

Sarah Fortner

RJ Hawk

Eddie Armstrong
Chris Kane

And a few more!

It will be a hot evening, but come out and support us anyway!!

WHEN: Thursday, August 6, 2015, 7PM to 9PM. 

WHERE: Reservoir Park. The ball field is in the back and you can park by the tennis courts. We are blocking off the top part of the parking lot behind the field.

RULES: Each celebrity will get 15 balls, with the first 10 being regular balls and the last 5 being "money balls" that count as 5 home runs for each ball that is hit over the fence. There will be a first, second and third place winner. 

FUNDS: We are asking that each celebrity raise a minimum of $50.00 for the event. Every dollar raised will go directly to the Arkansas chapter of the Foundation. 

SPONSORS: Our celebrities need sponsors! Sponsors can hang a banner at the ballpark for the event and distribute any flyers/handouts they wish. 

SPECTATORS: We are not charging for the public to come watch the Derby but have a suggested donation of $5. Everyone is welcome!!

WE WILL SEE YOU THERE!

Orkambi Announcement

Praise Father God from Whom all blessing flow!

Today, July 2, 2015, the FDA approved Orkambi, the second drug developed by Vertex to counteract the underlying genetic defect that causes Cystic Fibrosis, as opposed to treating symptoms.

You can read the press release here: http://www.cff.org/aboutCFFoundation/NewsEvents/7-2-FDA-Approves-Orkambi.cfm

Orkambi has only been approved to treat patients who have two copies of the most common mutation, known as F508del. The initial approval is only for patients 12 and older, but will be available for about 8,500 people.

Can you imagine how those 8,500 people feel today? Can you imagine how their families feel? I am so happy for each and every person who's lives were literally changed today. In my mind I picture a mother and father with a 14 year old boy who has CF. They have watched him struggle for nearly his entire life to grow, thrive, breathe and just be a little boy. They have stayed up countless nights listening to him cough, they have fought hard for weight gain and felt crushed when he required a feeding tube. The mom and dad have shed tears in CF clinic rooms as his lung function numbers declined, and held their breath waiting for cough cultures to come back, only to have to face another new bacteria growing in his lungs requiring IV antibiotics. They have missed work, school, holidays, family gatherings because of hospitalizations. Their 14 year old has always known that he is different and has been left out of sports, sleepovers, birthday parties, school activities, all because of infection risks or because he had to do treatments or because he was just too sick to participate. I can picture all of that, but I cannot imagine how they must have felt yesterday hearing the news that there is now a drug to treat the underlying cause of their son's CF. I imagine that today was probably one of the happiest days for them. What hope for his future was ignited today? What burden was lifted off their hearts? I can only imagine. Praise the Lord!

Orkambi is not considered a cure because it still requires the patient to take the medication daily in order to combat cystic fibrosis, and it is less effective than Kalydeco is for patients with gating mutations. However, it is a significant step forward and it was all made possible because of the investment in research by the Cystic Fibrosis Foundation. 

Crosby will not benefit from Orkambi because he does not have the mutations that it affects. However, it is a huge step forward in research alone. Right now the Foundation is investing in  more research to pioneer new technologies to repair the defective CF gene. Kalydeco and Orkambi are just the beginning. 

I am so thankful for the CF Foundation and for everyone who has donated to help the Foundation realize its mission of controlling and CURING CF. Please believe me when I say that every dollar counts!!! The Foundation has invested hundreds of millions of dollars to help develop CF drugs and therapies. 

Thank you for being on this path of hope with us as we await Crosby's cure.

Love,

Carmen

PS: We have several fundraisers coming up in the next couple of months and I will be sharing about them soon.