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!