Thursday, May 17, 2012

success again!





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



Tuesday, May 8, 2012

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








Wednesday, April 18, 2012

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

Wednesday, April 11, 2012

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!!


Monday, April 2, 2012

"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!

Wednesday, March 28, 2012

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!   

Monday, March 5, 2012

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

Wednesday, February 1, 2012

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.


Thursday, January 19, 2012

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!