it's been a while... but I'm back!!

It's been quite some time since I've been active on the blog!  The second half of 2012 was so busy for us that I really didn't have much time to keep up with blogging or with the Kaelyn's Kure facebook page.  But I'm ready to start up with posting more again, sharing updates, and getting ready to kick off 2013's fundraising and awareness efforts for CF!

So here's a few updates:

• Kaelyn has been doing great!  It's hard to believe this year she will be 5 already... and starts kindergarten this fall... WOW!  :)  Her health has been really good and she had her annual CF review a month ago at the end of December.  The results came back looking great: 
  
• Protein, iron, blood sugars, vitamins A & C all were great :)
  Vitamin E was elevated
  And vitamin D was once again low :( So just a few small changes to her daily vitamin intake to help adjust D & E levels! 

•  I decided that as part of my fundraising and awareness support this year, that I wanted to participate in my first half marathon :)  I am not a big runner.  I'm active, but my endurance for running is very low.  So this will be a huge challenge for me and a major accomplishment to finish the race.  I'm not running to achieve a certain finishing time though, I'm running for a cure and for Kaelyn.  I really wanted to push myself through this challenge because I know that CF is a challenging disease for those who face it every day.  Part of being able to run for CF is raising money to support ongoing research for a cure... so to be able to raise more funds to help us get closer to that is another reason I'm running.  I decided to re-join my gym again, because the winter temps here in Pittsburgh are just too unpredictable.  With temps this week in the single digits and windchills below zero, I just couldn't face my hatred for the cold and run outside... but I knew I needed to get started with my running if I want to have a chance at meeting me goal of completing 13 miles (and I only have 3 months left to get at it).  Yesterday was my first day back in the gym and I'm following a half marathon schedule given to me by a friend.  Yesterday's distance to accomplish was 3 miles, and I completed it, but it was HARD!  Thinking about adding 10 miles to that over the next 14 weeks is intimidating, but I want to think positive that this can be done... and I have the most amazing motivation to help keep me focused, Kaelyn.  I will be posting updates of my progress as I go along for anyone who wants to follow me on this journey.

•  Kaelyn's Kure is registered again for Great Strides 2013 :)  We currently have 9 people already registered with us to walk on our team.  The walk is scheduled for Sunday, May 19th at South Park and it's never too early to register as a walker.  As always, registration for this walk is free!  If you can't walk with us this year, but would still like to support our team, you can donate to team Kaelyn's Kure through the following link: http://www.cff.org/Great_Strides/JulieWeber  Last year we were able to raise over $15,000 as a team for CF and we're hoping to raise that much again or even more :)  We have such an amazing team and so many people who support us and helps us out each year to be as successful as we are doing what we can for the CF Foundation.  Thank you all again for the love and support - it is truly heart-warming to our family.

Team Kaelyn's Kure 2012

 

 
 

success again!

I'm well overdue for some thank you's going out to some amazing people and businesses who helped to make out 2nd annual Cheers For A Cure fundraiser an even bigger success this year!  On Saturday, April 28th we put together our 2nd annual Cheers For A Cure which is the biggest fundraiser we personally host to raise money for Kaelyn's Kure and The Cystic Fibrosis Foundation.  This year's success surpassed last year's by $1,200, which brought our one night total to $3,900 raised for CF!!  I set the bar high this year, my goal was $5,000.... but hey, there's always next year and I hope to improve more and more each time this event comes around in the spring!  The turnout was simply AMAZING!  I'd say we had about 150-175 guests throughout the night and we couldn't be happier for all those who made it out to show their support for Kaelyn and our family.  WE ARE BLESSED TO KNOW YOU ALL!

While the event stresses me out at times and can be chaotic pulling it all together, it's well worth it in the end.  Even though I take the brunt of the stress, the event would not be possible without the help of some truly wonderful people.  I'd like to take the time to personally thank everyone again for their help and donations: 

Citywide Garage Door Co. – Kindle Reader Basket w/ Amazon gift card

Dennis King – Kindle Reader

The Bittner’s & Whalen’s – Kuerig Coffee Maker

The Weber Family – Blue Ray DVD Player

Snap-On Tools – Cordless Power Screwdriver

Snap-On Tools – Blue Point 8 Piece Pliers set

Weber’s – TaylorMade RocketBallz Tour Driver

Weber’s – Coach Purse

Studio Raw – Salon Basket w/ $150 cut & color

Jessica Clair – La Pomponnee Salon Basket w/ $100 GC

Ashlee Starr – Beauty Bar Basket w/ complimentary cut

Gina Beck-Cifelli – Salon & Spa On The Green Southpointe Beauty Basket w/ complimentary cut

The Seaman Family – Lottery Tickets Basket

The Rost Family – Beers of the World Basket

The Verscharen’s & Fite’s – Outdoors Basket
The King Family – Bakery Basket

The Burgos Family – Wine Lover’s Basket

The Hirt Family – Tastefully Simple Basket

Dana Sasuta – 31 Basket
Christine Nelson & Sue Shore – Bath & Body Basket

Heather Mann – Kid’s Summer Fun Basket

Erin Monohan – Sports Golf Basket

Joanie/Bright Horizons – Family Movie Basket

Cindy McMullen – Mr. Magic Basket

Pecosh Counseling & Consulting – Ice Cream Sundae Basket

Ed Planinsek – 2 wildlife prints

Clique Vodka - Clique Gift Basket 

Finally, we’d like to thank Aron Schutzeus for allowing us to host Cheers For A Cure at Milestone and for all his support with this event!

The night's success wouldn't have turned out the way it did without your help and support, so THANK YOU ALL!!  Also, a big thank you once again to everyone in attendance that night - we loved sharing the evening with you all to help raise money to cure Cystic Fibrosis!  Your support at these events is making a difference - the money we are raising is generating life-changing research and new drugs that are doing things we have all been waiting for in the CF community. 

As we are just days away from the 2012 Great Strides Walk, I am very touched by all the people who have made a contribution to team Kaelyn's Kure this year.  Our family looks forward to walking with you all again on Sunday!  Here's some quick reminders for Sunday morning:

1. If you are NOT registered online by Sunday, please come to the walk a little earlier so you can complete your registration.  I'd say to arrive by 9:30am.

2. If you're already registered, please arrive to the museum building no later than 10:00am.  Be sure to check-in at our table inside.

3. Remember, EVERYONE must be registered to walk - including children.

4. Don't forget to wear your purple Kaelyn's Kure team t-shirt!  We will bring all the new orders with us on Sunday.  If you haven't paid us yet, please do so on Sunday.

5. Our Team Picture will be at 10:30am on the track.  We'd like to have everyone on our team in the picture, so please try to make your way to the track around that time.

6. The walk will begin shortly after pictures and there will be a small lunch served afterwards.  Plenty of water and pop will also be supplied.

7. There is a Chinese Auction at the walk with lots of great prizes - if you're interested, please bring cash to buy tickets.  All money raised goes to CF.  There will also be a few children's baskets too.

See you all on Sunday!!  If you still need to register or would like to make a donation if you're unable to walk, please visit:  http://www.cff.org/Great_Strides/JulieWeber

the light at the end of the tunnel...... is getting brighter!

My eyes filled with tears of joy this morning as an overwhelming amount of hope kind of took over.  Over the past (almost) 4 years since we've discovered Kaelyn's diagnosis with cystic fibrosis, I've felt a good mix of emotions.  I'd say sadness and anger initially described my feelings towards her CF.  There were plenty of times when I just didn't understand, why us?

We're all dealt different hands in life.  Some times our hand seems unfair, and I know that's how I've felt about mine on different occasions.  Although, when it comes to the one card we were dealt with Kaelyn's CF diagnosis, I feel like I finally understand why it was dealt to us.  While CF isn't something that I would wish upon my worst enemy and it's something no one should have to face... I feel like CF is a unique blessing in disguise.  In my eyes, our family was dealt this card in our hand of life because we are strong enough to do something about CF - to keep on fighting for a cure and to make a difference in Kaelyn's life.  When I see the support we get at the walk or at a fundraiser we put together, or the way our family and friends reach out without hesitation to do whatever they can to support our hope and dream of a cure one day - how can I not feel beyond blessed?  Or when we attend various CF events throughout the year which are filled with unknown faces... people who aren't directly affected by CF but are still fighting for a cure with us out of the goodness of their hearts - it some times leaves me speechless, but once again I leave each and every one of those events feeling very blessed for my daughter.

In less than 4 years, I sit here with another change in emotion... an even stronger sense of hope.  As a parent, I've always tried to have hope for Kaelyn's future knowing CF is a progressive, terminal disease.  If it weren't for hope, what would I have??  I'm not going to let myself sit and sulk, get depressed and feel like there's no fighting chance for my daughter.  At times it's hard, especially for me.  I can let negativity get the best of me at times, and not just when it comes to CF.  However, in less than 4 years, the research that has been happening in the CF community is simply amazing - way beyond what I'd expect to hear at this point!  The title of an article I read this morning was: "Vertex's Cystic Fibrosis Therapy Is Called 'Game Changing'".  How can I not feel butterflies in my stomach reading that headline?!?  And if you've become a part of the Kaelyn's Kure family or you've learned what exactly CF is, it should hopefully bring a smile to your face as well!  I've talked about Vertex Pharmaceuticals before when I announced back in January that the FDA had finally approved the very first drug to target the root cause of cystic fibrosis.  Incredible news, but it could only help 4% of the CF population with a certain mutation.

Remember that cystic fibrosis has over 1600 different mutations that one can inherit from their parents (if their parents are carriers).  The most common mutation is known as Delta F508.  About 90% of those with CF have at least ONE copy of this mutation - Kaelyn has one copy of Delta F508 (her other is P5L).  The news I read yesterday and this morning is about the 2nd drug that Vertex is working on right now that's currently in Phase 2 of clinical trials.  This 2nd drug is being tested on those who have either one or two copies of the Delta F508 mutation and the results have once again been incredible!  Breathing ability significantly improved, lung function increased... all because Vertex has been able to create drugs that are MAKING SALT TRANSFER HAPPEN in the cells (remember, CF mutations alter or stop salt transfer which causes the thick mucus that clogs airways and breeds infections).  Because these drugs are correcting the salt transfer, the symptoms of cystic fibrosis are being halted!!  THIS IS.... HAPPENING!!  It's not a cure yet, it's not finalized, and there's still a lot of work to be done - but if that doesn't lift your spirit of hope then I'm not sure what kind of news will!

To read the latest CF news in more detail:  http://www.nytimes.com/2012/05/08/business/vertexs-cystic-fibrosis-therapy-is-called-game-changing.html?_r=1&partner=yahoofinance

thirty-seven

37... does that number have any significance to you?  Probably not, right?  In June of 2008, that number became my worst enemy.  37 years is the average life expectancy of someone with CF.  I remember reading that fact right after we received the phone call about Kaelyn being a CF carrier.  At that moment I knew nothing about Cystic Fibrosis, but there was one thing I was certain of.... knowing 37 years isn't long enough.

After Kaelyn's positive diagnosis of CF ten days later, I burst into tears because once again the number 37 was back to haunt me.  It just wasn't fair... and it STILL isn't, nor will it EVER be.  Think about it, how old are you right now?  I'll be 30 this summer and I'm certain that 37 years of life isn't long enough for me.  Sure I've had many amazing life experiences over the past 30 years, but what about all the experiences I would be denied of because my life was cut short?  Some of you reading this may be well past 37 years... imagine not experiencing all you have once you passed 37.  Some may be a year from 37, five years, ten years... imagine.

One thing I hear all too often is people complaining about getting older.  People ashamed of their age or growing another year older on their birthday.  What's so bad about turning 30, 40, 50, 80?  For many, and not just those with CF, growing older is a privilege they are denied.  Fighting to stay strong, healthy, and positive so they can live life to it's fullest and never complaining about growing another year older.

The worst part about the number 37 is that it's just an average for those with CF - I know some who live well past 37 years, but at the same time I still hear of too many who don't even come close.  And sure none of us know exactly how much time we'll be given to live our lives, there's no guarantees... that's why life should never be taken for granted... as well as growing old.  Enjoy that privilege,  always.

We need a CURE!
http://www.cff.org/Great_Strides/JulieWeber

love and support

This time of the year always has a special place in my heart... each spring is when the Great Strides walk rolls around, along with CF awareness month in May.  Even though this is only our 2nd year participating since Kaelyn's diagnosis at birth, it's really opened my eyes to a lot of wonderful things about the CF community.

If you follow along with Kaelyn's Kure on a regular basis, you probably notice the increase in posts around this time of the year...... and most of them are us reaching out again for your support - to walk with us, donate, and spread awareness.  Some may get tired of seeing the reminders, but this is the time of the year to put in my maximum effort so we can hopefully end CF one day.  This is Kaelyn's life that I'm working hard to make a difference in - not to mention the lives of all others with CF.  Every fact I write to spread awareness to those who may not know all we have learned, every time we speak at an event, every time we attend or host a fundraiser, and every year we walk as Kaelyn's Kure, I do it to make a difference....... no matter how big or small that difference may be.

To families like ours, what makes the biggest difference to us is the support we receive along the way.  Supporting Kaelyn's Kure extends in so many directions, some of which may have never crossed your mind.  I know for many, one of the first things that comes to mind when speaking in terms of support is making a donation.  In reality however, it might not always be possible.  So what else can you do to help?  When it comes to showing support there's plenty you can do, and most of these things are the most meaningful to families like ours......

• Walk with us.  It's a great way to be by our side on a day that's entirely dedicated to CF awareness.  Seeing all those faces who showed up to walk with us last year was simply amazing, especially the faces of some who I hadn't seen in quite some time.  Faces of those who I graduated high school/college with, faces of those who I've worked with, and the new faces of those who we just met after getting more involved with the CF community.  Walking is a great way to show your love and support!  
• Spread awareness.  This is one of the easiest ways to help, and to us, is the most heart-felt simply knowing how much people care.  Share our blog, our Facebook page, our CF documentary video, invite those who you know to the walk or to a fundraiser.  When we see family and friends sharing these things with others and spreading awareness with us, it really means a lot.  After all, "actions speak louder than words and to the families living with CF, it can some times be more helpful than dollars"!  :)    

Love and support mean the world to us...... And it's very touching to know just how much of that surrounds Kaelyn.

 
To walk with us, watch our CF documentary video, or make a small donation to our Great Strides team, please visit:   http://www.cff.org/Great_Strides/JulieWeber
The walk is just a little over a month away, so be sure to register online when you have a minute.  And if you walked last year, registration is simple because all your info will still be saved!

Sunday, May 20, 2012 - 10:00am at South Park, PA.  Hope to see you at the walk next month!!

"give a little love" - our first documentary

Last month Chad and I were asked if we'd be interested in sharing our story and filming a short documentary on CF to be used for awareness.  As Kaelyn's mom, I like to take advantage of each opportunity we have to raise awareness because it's so very important to us.

So many people in our lives are now aware of what CF is, but a lot of people don't see the other side of CF - which is what it takes to care for Kaelyn and keep her healthy.  It means a lot to us to be able to share our story with others......



If you'd like to support Kaelyn's Kure and the CF Foundation, please visit http://www.cff.org/Great_Strides/JulieWeber and click on "Click to Donate".  Remember, any amount you can donate helps to make a difference in someone's life.

Thank you to all the wonderful people in our lives who continue to support CF and our dream of finding a cure.  xoxoxo
Special thanks to Dan Burda for making this documentary - you're amazing!

questions from kaelyn

Last night as I was putting Kaelyn to bed, she hit me with some pretty unexpected questions.  As soon as I put her in bed she said to me, "Mommy I'm not coughing anymore, my cough is all gone".  We all know at this point that coughing is common for those with CF, however for Kaelyn, she rarely has a cough.  Times when she would get sick throughout the winter, a cough would accommodate a cold but on a day to day basis it's rare to hear her coughing.  I thought her comment about her cough was pretty random being that she hasn't had a cough in quite some time and has been very healthy.  I agreed with her that she hadn't been coughing in a while, and after that statement the conversation went something like this, and yes this is a 3 year old I have to answer to:

Kaelyn - "If my cough is gone then I don't have to do my shaky vest anymore!"  (in an excited tone)

Me - "No, you still have to do your shaky vest every day.  It helps keep you healthy and keeps your cough away."

Kaelyn - "Why?"

At this point my heart sank... I'm about to explain why and tell my 3 year old she has cystic fibrosis.  Until this point, we'd just go about our day, do our treatments & meds, and Kaelyn has never questioned it.  I don't believe in making up stories about why she does what she does or hiding from her that she has CF, it's a part of her life.  I figured I'd tell her about cystic fibrosis and explain what it was when the day finally came that she asked... which happened to be last night.  I figured one of two things would happen when I told her:  1.) She would give me the puzzled, curious look of a 3 year old for a few seconds, then start talking about something else... OR 2.) She would ask what CF was.  Knowing Kaelyn, my gut feeling was she would go with option #2.

Me - "Well you have to do your shaky vest every day forever because we found out you had something called cystic fibrosis when you were born."

Kaelyn - "But I'm not a baby anymore!"  (since I said to her, "when you were born")

Me - "Well I know you aren't a baby anymore, but not just babies have cystic fibrosis.  Older kids and big people have it too."

Kaelyn - "But none of my kids at school have cystic fibrosis."  

Quick time out from this conversation - hearing Kaelyn say "cystic fibrosis" was the best part of this whole convo.  She did pretty good at pronouncing it, but it reminded me of why some kids call cystic fibrosis, 65 Roses - much easier to say! 

My conversation with Kaelyn felt like I was talking to someone a few years older.  Each response she gave to each of my explanations was some what unexpected...

Me - "Well no, none of your friends at school have cystic fibrosis.  Not many people have it."

Kaelyn - "Well where did my cystic fibrosis come from Mommy?  Who gave it to me?"

Sinking heart again....

Me:  "It came from mommy and daddy."

Kaelyn:  "Why did you guys give it to me?"

At this point, I wasn't exactly sure how to explain it.  I never thought our conversation would have become so deep for someone who is still so young.  I never thought I would be trying to rack my brain for the best, and most simplistic way to explain it.  Afterall, she wanted to know.  Would she remember what I explained to her?  Of course she would, this child remembers EVERYTHING... often she remembers things I don't even remember...  So I wanted to to make sure my explanation was correct (in the simplest form) because I knew what I told her last night, would be repeated at some point down the road when she talked about CF again.  So as best as I could, I gave her this simple explanation: 

Me - "Well just like mommy and daddy gave you the color of your hair, your eye color, how tall you'll grow to be, and lots of other things... you got cystic fibrosis from us too." 

Kaelyn - "What does it (CF) do?"

Me - "It makes you cough and some times makes you sick."

Kaelyn - "Then I do my shaky vest, right mommy?"

Me - "Yep, that's right!"  And guess what?"

Kaelyn - "What?"

Me - "Even though you have cystic fibrosis, you'll always have mommy and daddy here to take good care of you and help you to stay healthy."

After that, we smiled at each other, and I gave my little lovebug a hug and kiss.  My eyes filled with tears, but I held them back as best I could and quickly wiped them away as we hugged.  I know some people won't agree with how I explained everything to my daughter, but I know her better than any outsider.  This was one of the very first, mature conversations I've had with Kaelyn as she inches towards turning 4 in May... and I know it most certainly won't be the last. 

As a parent, there are no perfect answers, solutions, or advice to follow.  But there are millions of ways to be a good parent to your child - and that mostly stems from taking the time to get to know your child and what's best for him/her.  In that moment last night, the answers I gave to Kaelyn's questions are what felt best in my heart.  I'm not embarrassed by my child having a genetic disease and I never want her to feel that way either.  It's not something that should be kept a secret from her, nor should she keep it a secret from anyone else.  It's a part of who she is and who she will become.  I strongly feel that cystic fibrosis will never control Kaelyn's life unless she lets it.  She should run, play, have fun and enjoy life every day regardless - and don't want anyone to feel sorry for her.  The more she understands about CF and how to stay healthy, the better her overall life will be as she grows up.  As a parent of a child with CF, it's my job to teach her since kids learn by example.  It's my job to let her live her life as normally as possible and not hold her back just because she has CF.  And mostly importantly it's my job to smile every day and remain positive & strong, making it clear that I will be there every step of the way!   

save the date!

It's that time of year again when Kaelyn's Kure is in full swing getting ready for the Great Strides walk!  The walk this year will be on Sunday, May 20th at South Park.  Our team will be ready to take on the walk again as we walk for Kaelyn and Cystic Fibrosis.  Last year's walk, which was our very first Great Strides, was beyond successful!  Our team consisted of 85 walkers and we managed to raised almost $11,000 for the Cystic Fibrosis Foundation!  Those funds are what brings the science and research to the table for CF and adds years to many lives, which is so, so very important!  If you'd like to join our team for the walk, or donate in honor of Kaelyn, visit our Great Strides page:  http://www.cff.org/Great_Strides/JulieWeber

A big part of last year's success for our team was our fundraiser in April, Cheers For A Cure, which we will be hosting again next month!  It will take place on Saturday, April 28th and we will be holding the event at Milestone in Brentwood on Brownsville Road. 

We plan to once again have a Chinese auction and 50/50 raffle.  If anyone is interested in volunteering to provide any baskets, prizes, or gift cards for the auction, please let me know!  You can email us at kaelynskure@gmail.com or get in touch on Facebook.  Right now we are looking for any and all types of baskets - last year we had a garden basket, 2 wine baskets, a picnic basket, cooking basket, outdoors basket, and mixed drink basket.... along with several different prizes and gift cards.  We truly love the support of our friends, family and volunteers who help us to make this event such a success!

As the event gets closer and all our ideas start coming together, I will post more details.  :)
For now, please help us spread the word and don't forget to SaVe ThE DaTe!

Cheers For A Cure

Saturday, April 28, 2012

Milestone in Brentwood - Brownsville Road

Walk with Team Kaelyn's Kure
Great Strides for CF

Sunday, May 20, 2012

South Park @ 10:00am

what a feeling!

Yesterday marked a major milestone in the CF community as the FDA approved Kalydeco, the VERY FIRST DRUG to address the underlying cause of Cystic Fibrosis!!  This is a HUGE advance in the search for a cure for CF!  Although Kalydeco only benefits those who have the G551D mutation and are 6yrs or older (roughly 4% of the CF population), it represents true hope for the future of ALL who suffer from this disease.  Many doors have now been opened because of the science behind the drug, and a cure has never been closer in the history of Cystic Fibrosis!  Kalydeco dramatically improves lung function, lowers chloride levels and helps patients gain weight - all key problems in those with CF.

See the announcement:  http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/1-31-FDA-Approves-Kalydeco.cfm

A key point to remember with Cystic Fibrosis is that not all cases are the same and more than 1,000 mutations cause the disease to occur.  I'm sure you're thinking, "that's a lot of mutations", however those 1,000 mutations in the CF gene fall into six different categories or classes.  Understanding each of the six classes will hopefully allow researchers to develop treatments for each specific class.  Treatments that work for an individual will depend on his/her mutation.  This is exactly what the advancement with Kalydeco is doing - it targets the underlying cause of CF for the G551D mutation and restores health.  To get a full understanding of the CF mutation categories and classes, follow the link I have provided from the CF website:  Targeting Mutations that cause Cystic Fibrosis

It's amazing how much has changed in the CF world just since Kaelyn's diagnosis three and a half years ago!  To think back to my very first readings and research on CF when we got the phone call that she would need to be tested... reading "average life expectancy is 37 years" - the heartbreak we felt... to the feeling we felt yesterday reading the news of Kalydeco and the FDA's approval.  WHAT A FEELING!  A feeling of success and celebration in the CF community, and also a feeling of HOPE for the future... which one day I'd love to describe the feeling when I read, "We've found a CURE for Cystic Fibrosis!".  And we're getting close....

Thank you to all of you who have donated to, organized, or attended an event for the CF Foundation!  Your generosity and efforts prove that we can find a cure for CF!  A cure has never been closer, so please don't stop - continue to help and show your support... you're helping to save many precious lives!

Lastly, I wanted to share our 2011 Thank You Tribute video in honor of all those who helped and supported Kaelyn's Kure last year... our incredible success was because of each and every one of you!  Whether you walked, donated, came to any of the CF events, bought a t-shirt - THANK YOU!  Celebrate the success of this news as well, because your efforts are what made this milestone possible for the CF community.  You all have a special place in our hearts and especially in Kaelyn's.

Make a video - it's fun, easy and free!
www.onetruemedia.com

keeping Kaelyn healthy

It's been quite a while since I've been able to post on our blog, but now that that craziness of the holidays is a thing of the past, I plan to post much more.

Today I wanted to share a little about Kaelyn's CF care in order to keep the mucus out of her small lungs, and maintain her overall health.  This is a day in the life of Kaelyn:

Everything on this table is part of Kaelyn's daily CF care currently. For those of you who follow Kaelyn's story and know about her CF case, one thing you will notice that's missing from her daily routine are pancreatic enzymes. 85% of those with CF have pancreatic problems as well. Fortunately Kaelyn does not.  Almost everyone with cystic fibrosis needs to take pancreatic enzyme supplements with meals and snacks. Taken by mouth, the enzymes go to work in the intestines to help digest food so it can be absorbed by the body.

1.  Nebulizers – Clearing the Airways
Since inhaled drugs more easily reach the airways, they are common in CF care. Inhaled treatments can be given by aerosol, a mist treatment made from liquid medicines. In this case, the drug goes into a nebulizer (on left in picture) and is attached to a small air compressor (in back of picture). The compressor blows air through the nebulizer and makes a mist. CF patients inhale the small particles in the mist through a mask (on right in picture) or mouthpiece (front in picture) for several minutes to help clear the mucus.

2.  Inhaled Medication #1 - Pulmozyme
CF is a complicated disease that causes your body to produce extra-thick, sticky mucus. Pulmozyme uniquely targets one of the causes of this thick, sticky mucus to help keep mucus thin and loose. Pulmozyme may help improve lung function and reduce the risk of infection in mild to moderate disease.

3.  Inhaled Medication #2 - Albuterol
Albuterol is used to prevent and treat wheezing, difficulty breathing and chest tightness. It works by relaxing and opening the air passages to the lungs to make breathing easier.

 4.  Vitamins and Minerals
Most people with cystic fibrosis do not absorb fats properly, so certain vitamins, or "fat-soluble" vitamins, are not absorbed. These vitamins are Vitamins A, D, E and K. People with CF usually take these vitamins daily.
Kaelyn's main deficiency is Vitamin D.

5.   Avoid The Spread of Germs
Cystic fibrosis puts the airways at risk for lung infections. There are, however, effective ways to lessen the risk. One way is to limit contact with known germ sources. Although germs are everywhere and cannot be avoided, one of the best ways to keep from catching or spreading germs is through effective hand-washing, whether with soap and water or alcohol-based hand gels. Everyone with CF should avoid unnecessary contact with people who have a cold or any other contagious illness.
I keep these mini ones in my purse and we recently got Kaelyn the ones she can attach to her bookbag to have at school.

6.  The Vest - Chest Therapy
The Air Pulse Generator rapidly fills and deflates an inflatable vest, gently compressing and releasing the chest wall up to 25 times per second. This process, called High-Frequency Chest Wall Oscillation (HFCWO), creates mini-coughs that dislodge mucus from the bronchial walls, increase mobilization, and move it along toward central airways.

Here are some photos of Kaelyn getting treatments with her vest:

CF care is so, very important!  It's daily, it's time consuming, but it keeps Kaelyn strong and helps our brave little girl beat CF every day!  It might not be much fun for any of us, but keeping Kaelyn healthy and happy is our #1 priority!

thankful

I read a quote yesterday and I know it definitely touched base with me... I actually think it's one that we can all relate to at some point or another.

Through the up's and down's of life, it's easy to have those days where you wake up and nothing seems right - the "what if's" fill your mind.  What if I had a different job?  What if I didn't lose touch with certain friends or family?  What if I made a different decision?  The list could go on and on...  The truth is, there's always going to be doubts, things you wish you did differently, or situations that had alternate outcomes.  That's when it takes the power of opening your eyes in seeing what you do have.... and then appreciating it.  Remember, when you think you have it bad, there's always someone else out there who has it worse.

With Thanksgiving a week away, it gives me extra time to remember just what I'm thankful for.  For my wonderful husband and daughter, the 2 things that mean so, very much to me.  For Kaelyn's health over the years, I still feel I can't be thankful enough for that!  For family and friends who have been there through thick and thin, good and bad and are still right here by our side.  Everything else we have and enjoy in our lives is just an added bonus... which I'm very thankful for as well!

So what's missing then??  Sure I could probably come up with a few things... but when I take a look at all I do have, all the great people in my life, plus those who are gone but have touched my life, what's "missing" seems to not matter much.  Never lose sight of the wonderful blessings that surround you every day and always take time for what matters most to you in life... you should never be too busy for the things you truly care about!  :)

school days!

It's been just about 3 months now since Kaelyn started school and so far she's been loving every minute of it!  I love hearing about her day when she comes home and it makes me feel great knowing that she's in a wonderful environment and truly enjoying herself on a daily basis!

One of the best parts about Kaelyn's school are the weekly pictures her teacher sends us so we can see the things she's doing in school.  I decided to take a few minutes to create a post displaying some of Kaelyn's school fun that she's had since starting in August.  Enjoy!

getting closer!!!

So many amazing news headlines and stories have been popping up this month in the CF community - and amazing might just be an understatement... more along the lines of life-changing for a small percentage of those with cystic fibrosis!  This is the news that anyone who battles this disease on a daily basis has been waiting to hear.  I decided to break down all the stories I've read over the past week to highlight some of the key information as drug makers get closer and closer to new treatments for CF that could stop the horrible impacts of the disease.

So many of you who know Kaelyn and our family have reached out earlier this year to help us raise funds for cystic fibrosis, and while you know in your mind that you did a wonderful thing, you might not know just how big of an impact your contribution really is.  Sure you could do what I did - read all the news/information about what's happening on your own.  However, it might not all make sense to you - so here I go..... I'm by no means a scientist, but let me try my best to break down what's happening so you can see what a difference your help has made.

First off, no 2 cases of CF are exactly the same.  Cystic fibrosis is progressive and the progression of this disease along with the severity of it's symptoms vary from person to person.  While it's true the average life expectancy is mid-30's and some live well beyond those years, we unfortunately are still losing lives entirely too young.  I'm talking about children who still aren't making it to elementary school, teenagers who don't get the chance to graduate high school, and the list goes on.  How is that fair?  Is living a life to the age of 35 a long enough life for you?  I'm going to safely assume probably not, so why should we settle for it be a long enough life for someone with CF?

I've seen the destruction CF can bring to families, through the eyes of the others in the CF community.  It's devastating what this disease has done to some of these families and to the young lives that fought the fight and unfortunately lost their battle.  These children so weak, so sick but at the same time so very strong & brave and they are now in the hands of God, as an angel watching over the rest of us like Kaelyn.  I know every time I blow out the candles on my birthday cake, I'm wishing for a cure for our little lovebug and I'm certain Chad wishes for the same thing every year too.  We've said prayers over and over again to watch over Kaelyn and keep her healthy through the years.  Well it looks like some of the wishing and prayers are being heard...

Just last week on October 20th an announcement was made by Vertex Pharmaceuticals that the drug Kalydeco (vx-770) is finally under review for approval by the FDA.  This will be the very first drug on the market that will target the underlying cause of cystic fibrosis.  Currently any treatments CF'ers receive to date only help to relieve symptoms.  While these treatments are effective and prolong life, the new drug should be able to add decades of life over a short period of time!  How amazing, right?!?  This phase of the drug however will only benefit those who are 6 years or older and who have at least one copy of the rare G551D mutation.  Only 4% of the CF population have this copy, but that's approximately 1,200 lives that could potentially be changed in a dramatic way! 

HUH?!??  I'm sure some of you are saying that to yourself right now.  As some of you might remember reading or hearing me say before, cystic fibrosis is a genetic disease which has thousands of known CF mutations - G551D is just one of them.  Kaelyn unfortunately doesn't fall into either of the 2 criteria for the drug - she's only 3 and does not have a copy of the G551D mutation.  Her genetic mutations are DeltaF508 and P5L.  DeltaF508 is the most common gene mutation of CF.  The good news is, right now clinical trials are taking place to evaluate Kalydeco in combination with another drug (vx-809) that would benefit those with a copy of DeltaF508 - And Kaelyn has a copy!  It is their hope that with time they will be able to benefit ALL people with CF and this is a major step in that direction!

It's sometimes hard for friends and family to grasp the enormity of cystic fibrosis.  Most of the time with Kaelyn, no one would even know she was affected.  Right now, we couldn't be more thankful for her health and her pretty much symptom-free 3 years of life she's lived so far.  We know in the back of our minds though that cystic fibrosis IS progressive.  What's unknown is the path and rate of that progression.  We need to stop that progression so kids like Kaelyn can live long, healthy lives!

If you want to be a part of curing a disease that will give futures to many little kids, please continue with us in our fight against CF.  As I said in the beginning, life-changing things are happening right now!  Keep your prayers coming, we're getting closer!! 

tis the season for being sick

Cold and flu season are here again unfortunately. 

For most of us, getting a cold is no big deal.  Sure it sucks, but we all deal with it - the runny nose, congestion, cough, and sneezing.  The symptoms come, our bodies fight it off, and before we know it we're feeling 100% again.  For Kaelyn and other CF suffers, colds can turn into something more serious - lung infections.  Because CF suffers have a faulty gene that allows too much salt into cells and not enough water, a build-up of sticky mucus ends up being the result.  This sticky mucus builds up in the body's passageways, and at times when a cold or virus attacks, the body can't always fight it it off on it's own.   Repeated lung infections and inflammation of the lungs create irreversible damage and threaten the health of CF suffers.

Kaelyn's health is usually outstanding and more than we could ask for - however, she has already had her share of sicknesses this cold season and recently had a virus that she just couldn't fight off on her own.  Runny nose, bad cough with mucus, hoarse voice, reoccurring fever... which meant that for the first time in 3 years, it was time for antibiotics.  Penicillin antibiotics were prescribed and for the first week they seemed to be working well.  However this past Saturday, I started noticing small red bumps on Kaelyn's stomach and back.  As the day progressed, they increased in size and number so a call to the doctor was needed.

It turns out Kaelyn has a severe allergy to penicillin antibiotics.  She's doing fine though and all of the spots from the rash should clear up in about a week.  Her doctor said no antibiotics of any type for a while because Kaelyn could develop allergic reactions to other types while her body is recovering, and we definitely don't want that to happen.

Here's a picture of Kaelyn from yesterday:

what did you do last night?

Cystic fibrosis can be a very high maintenance disease to keep yourself or loved ones healthy.  For some with CF, daily routine includes several breathing treatments, CPT (chest percussion therapy), 40-50 pills/day, vitamins, high salt intake, or even lengthy hospitalizations.

Fortunately for our family, Kaelyn was diagnosed with atypical CF very early on in her diagnosis.  At this time, our primary concern is keeping her lungs healthy and functioning properly.  Most individuals with CF will suffer from both lung and pancreatic/digestive problems throughout their lives.  For Kaelyn however, her pancreas is fully functioning on it's own - meaning she doesn't require the high intake of enzyme pills to digest her food properly.  I'll never forget the day we found out that news.  Around 85% of the CF population is effected by digestive problems and poor growth, so it was a blessing the day we heard Kaelyn was pancreatic sufficient!  She's steadily been on track with her growth over the past 3 years and is currently in the 90th percentile for height and 50th for weight. 

Last night, Chad and I opened a new chapter of learning in our book of CF care for Kaelyn.  Last week she finally received her airway clearance vest for CPT rather than us administering CPT manually (by tapping on her chest and back).  Around the age of 3, kids are old enough to be fitted for a vest and at Kaelyn's last CF appointment she was fitted and sized for her little pink vest.

Learning to use the vest and how to care for it is pretty simple.  The vest itself consists of 2 layers, the outer layer which Kaelyn chose pink as her color, and the inflatable layer that fits inside.  This inner layer will rapidly inflate with air once the air pulse generator is turned on.  The vest will gently compress and release the chest wall which will loosen up any extra mucus that might be stuck in the bronchial walls.  As mobilization increases from the shaking of the vest, Kaelyn can easily cough up anything that might be making breathing difficult and keep her airways clear.  Keeping the extra mucus away from her lungs and out of her airways helps reduce the chance of infections, and ultimately less infections result in better overall health and hopefully staying out of the hospital to be treated for sicknesses.

So far, Kaelyn's been sick twice now since she started school/daycare.  Right now she's currently had a strong cough and cold for over a week and even broke out in hives last week.  I knew from the very beginning of her first exposure to daycare this year (as we all know too well to be the home of excessive germs) that she would probably encounter more sicknesses this year than she has her entire life.  We can only hope that with our care and the amazing treatments that are available to those with CF that we can keep her as healthy as possible.  :)

Kaelyn is required to get airway clearance treatments from her vest twice per day for 20 minutes each.  Last night was her first official treatment and she did surprisingly well.  She got through the first 15 minutes smiling, laughing and talking to us as we joked about her funny voice as the vest was shaking and doing it's work.  The last 5 minutes brought tears as the intensity increased, as well as the noise from the generator.  Every 3-4 minutes the intensity will increase until the full 20 minute session has been completed.  She got through it though, and I have a good feeling that once she gets used to her new vest and what it does, that she'll do just fine with treatments!  She's a tough little girl but it's just hard for a 3 year old to understand why she's even subjected to wearing a "shaky vest" (as she calls it!) in the first place....

"BREATHE EASY" 

when you're faced with the unexpected...

Each case of CF is different.  While some have very severe cases of the disease, others are only faced with mild symptoms.  Regardless of the severity, it doesn't alter the way each parent feels when they receive the news that their child has cystic fibrosis.  It doesn't alter the uneasiness or uncertainty that we each face when it comes to our child's future - because that's how it is with this disease; it's filled with the unknown.  When exactly will things get bad?  When will things get better when they do go bad?  When will a cure be found?

Raising a kid is a challenge in itself - then add an extraordinary hardship into the equation, like Kaelyn's CF, and you're faced with a whole additional set of challenges.  No one can ever 100% prepare you to be a parent when the day comes.  Although it seems everyone wants to saturate your mind with parenting tips and advice when you have kids.  I've been bombarded with the typical parenting remarks of, "You should do this" or "Why are you doing that".  The advice and opinions are endless!  But, what about when you receive unimaginable news about your child that no one prepared you for or offered any prior advice in handling?

Life is so random and filled with the unknown.  I've learned that every day you should expect the unexpected, whether it be good or bad.  It's full of up's and down's, twists and turns - and through it all, we come out a little bit stronger.  Sure no one prepared me for the news of Kaelyn's CF.  I'm not sure that if I was prepared or knew a little bit more about it at the time that I would've handled myself any differently or that it would've hurt any less.  There's some things in life that you just can't prepare yourself for because of their unexpected arrival.  However, how you handle what you're given is completely up to you, no matter the advice you receive or the lack there of.  Plain and simple - Not everyone has the answers you're looking for.

Part of why I've turned to blogging is to let out all that's on my mind because some days I just need to, for my sanity.  I don't speak of CF on a regular basis to friends and family because as of now, Kaelyn is extremely healthy.  Some people may even "forget" she has the disease, but for me I never forget no matter how well she is doing.  Thoughts always consume my mind about her future.  That's the other reason why I'm doing this - to read the opinions, advice and stories of others faced with similar challenges.  Some people ask me why I choose to read some of the CF blogs that are out there - I've been told they are "too sad or depressing" for me to read.  But to be honest, these are real people sharing real stories and experiences.  Though I've never met these individuals, I feel their joy in good news they share and their pain on the dark days - It provides a sense of reality and a way for me to cope with things.  Most aren't filled with an overwhelming amount of positive energy, but what they are filled with is the ugly truth.  The facts about their biggest enemy, CF and the continuous reminder that cystic fibrosis is still taking away young lives.  They share their stories simply to promote awareness.

So this is me today.  The me that's been made stronger, who's able to share advice and spread awareness - because there was a time 3 years ago that I couldn't do either.
 
LIFE...
filled with the unknown...
"You never know how strong you are until being strong is the only choice you have."

Outstanding Results!

I know it's been long overdue for me to post about Team Kaelyn's Kure and the success we had at our first Great Strides walk, but things have been pretty busy over the past month since the walk!

Overall, the South Park walk location raised over $120,000 last month at our walk on May 22nd!  Simply amazing!  What's even more amazing is that Kaelyn's Kure helped to contribute almost $10,000 to that grand total!  It looks like our team total came in at $9,933 - which is so awesome, especially since the average most new team's raise is approximately $1,500 their first year walking with Great Strides.

I feel so blessed to have met so many wonderful people who have reached out to support cystic fibrosis and Kaelyn.  I know as she gets older and realizes what CF is all about, along with the support she's had growing up, she will feel just as blessed that you all have been there for her since the day we found out her diagnosis.  To only be 3 years old and have such a strong support system will mean the world to her in the future.

The best part of the walk last month was seeing all the faces who showed up in their purple Kaelyn's Kure t-shirts to walk with us.  Our team was 85 walkers strong that day, and while most faces were familiar, we also had some new faces join our team - we couldn't be happier in meeting you and having your support!  Another amazing part of the day was seeing some friends whom we hadn't seen in a few years!  All in all, it was just a fantastic day!

TEAM KAELYN'S KURE 2011

To view even more pictures from the 2011 Great Strides walk, follow the link below and if you haven't already viewed and "liked" Kaelyn's page, please do!  We use it to keep everyone up to date on upcoming fundraisers and to help in continuing to spread awareness about cystic fibrosis!

More pictures from Team Kaelyn's Kure - Great Strides 2011:

https://www.facebook.com/media/set/?set=a.189689761078792.50532.174010899313345

Thanks again to everyone who, in some way or other, supported CF this year!  And remember, you can continue to support the foundation at any time, there's always fun things going on all throughout the year.

  

Keep in mind that your help has made you personally responsible for helping improve someone's life!  =)