Saturday, June 28, 2008

Awesome day!

I love Saturdays :).
Today consisted of...surfing, hanging at the beach with my two good friends Mariel and Typhani, watching Typhani stand up on her first surf board, eating Pedros Tacos in San Clemente (yum) with Mariel, driving and smelling the beach air, shopping in a few surf shops, and ending the evening with a family BBQ.

Not too shabby :). Wish I had some pics to top it off...but nonetheless, it was a beautiful California day!


Thursday, June 26, 2008

Love to Kimi and Mike

Tonight I had to say goodbye to Kimi and Mike as they drove away and moved to Pennsylvania. Kimi and I have known each other since our first day at Biola University, and we became instant friends. That friendship grew and we were roommates our Junior year, had lots of fun memories and after we all graduated together, God kept that friendship growing. I have been so blessed by Kimi and Mike and am so thankful that we have continued to stay friends post-graduation and throughout the many years we've know each other.

I stood with them at their wedding, and will continue to stay in touch and treasure the friendship we have as they move onto a new stage in life in Lancaster, Pennsylvania...I love them both so much and I can't wait to see all that God has in store as they go into this new chapter in life. I love them so much and am praying for safe travels as they drive across the US to their new home :).
Love you, Kimu!

Ps. Here are a few pics...this is 'the fam' (minus Judy) hanging at last year's CF walk and the one below is Kimi and I. I am so thankful for these wonderful friends :)

USC Update

Thank you for praying for my first visit to was a great visit! I spent the entire afternoon there- the visit was jam packed with chest x-rays, blood tests (yeah..they took 12 tubes of blood, I was a little woozy!), PFT's
and also a sputum culture. I also filled out a ton of forms about medical history and got to meet the entire CF team of a dietician, nutritionist, pharmacist, and respiratory therapist. I spent the most time with Debbie, the RN and clinical coordinator and also my new dr, Dr. Rao....Everyone was great! They took a lot of time to get to know me and help me get to know them, I was very impressed that they had read and discussed my chart beforehand, and they were VERY organized and ready for me- they made me feel very welcome :).

Considering this will be my new 'home' away from home for the many years to come, I was very impressed with the way they ran the clinic, I was impressed with their attention to keeping the clinic clean and exposure between patients low (We all wore masks and gloves, and nobody was in the waiting room together- CF patients can't interact as much due to the ease of passing bacteria back and forth), and they were very knowledgeable and personable...

Minus the drive and the farther distance, I think I'm going to like being a USC Trojan... :)


Wednesday, June 25, 2008

Today is USC day!

This afternoon I am visiting my new CF Clinic at USC University Hospital

Please keep me in prayer today as I get to know my new doctors and medical staff, that I would begin to build good relationships with the new people that will be taking care of me. Pray for trust to build and for good and thorough care for all my health needs. Also, pray my lungs are doing well- sometimes I have difficulty with the smog in the summer, so it will be good to see where I am at and how i'm doing.

I'll give an update tonight when I get back, my appointment should take the whole day since its my first time there...
Here's to new adventures :)

Monday, June 23, 2008

Ephesians 2:10

" For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do" -Ephesians 2:10

Thank you, Lord that you created us and use us for your specific plans. I was encouraged by the message at church yesterday...we are created for God's glory to be lived out in each aspect of our lives!


Saturday, June 21, 2008

Praying for Pipeine to a Cure (PTAC)

Today is exactly one month until our big Pipeline to a Cure Event, on Saturday July 19th 2008!!
I ask you to join me today in praying for this event, praying for me at this event, and praying for the many people involved in this event....

Specifically, please pray for:

-The awareness and cause of CF, that people would have open hearts and minds to hear all about what this disease is about. Pray people will be called to respond to that need in finding a cure for CF.

-The committee planning this event- please pray they will be open to conversations with me and pray they can recognize a need for God in their busy lives. Pray for all the details of the night to come into place smoothly and for lowered stress levels.

-The many pro-surfing companies involved, that they would be affected and open that night to what CF is about.

-Pro-surfers, Kelly Slater, Laird Hamilton & Dave Kalama as they've become heavily involved with CF through sponsorship and endorsing PTAC. They have a LOT of influence over the surfing community, and their involvement is not by accident- I believe God is working on them, and their hearts are open to God through the avenue of CF. Pray they can make it to the event, and that God would continue to stir in them. If God has opportunities planned for conversations with myself or other Christians involved with CFF, pray for open doors and open hearts.

-Pray for me. I have a huge role to play that night, and continually as God uses CF in my life with the many I meet. I've been placed in a position of influence over many, and I want to be a good steward of that in representing God in all my relationships. I will be giving a 15 minute speech about my life- pray I can construct it well, that God would speak through me, and that my life with CF will be conveyed accurately and vulnerably. Pray my heart would be aware of God's open doors, and that the Holy Spirit would speak through my heart, words and actions.

-Pray for a cure. I wouldn't be involved if I didn't think a cure was possible...This event has the potential to raise SO much awareness and ultimately money for research, that a cure can be found. I know God is in that, and I believe God can use science to show His power- so please join me in praying for a once-and-for-all CURE for Cystic Fibrosis. May God be glorified in this cure whenever it is found.

Thanks...the event is only 1 month away!

Friday, June 20, 2008

Meeting Kelly Slater (part 2)

See the other post a few days ago called "Meeting Kelly Slater" for the story attached to this picture...


It's Officially Summer!

That's on the calendar is the first day of summer! And according to the thermometer on the back porch of my house, it is seriously summer because right now at 7:23pm its still 100 degrees outside...yikes!

Happy Summer to all this heat, you'll find me at the beach :)

Thursday, June 19, 2008

Mauli-Ola Foundation- Benefit Concert

Saturday night the Mauli-Ola Foundation, which means "Breath of Life" in Hawaiian, hosted a benefit concert for Cystic Fibrosis! Their goal is to teach kids with CF how to surf so that they can benefit from saltwater and its great affects on the lungs (see this article for more info, i'll post more details at a later date).

The concert was great- we hung out in laguna beach and heard 2 different bands! The main band, "The English Beat" was the main crowd-pleaser :)...Good times!

I was their speaker for the evening. I had the opportunity to share my life's story a little, as well as how I am involved with Mauli-Ola, and the Cystic Fibrosis Foundation. We shared about the great things happening with Pipeline to a Cure also...Thank you Lord for good opportunities!

Here are a few pics of me speaking... and a shout-out to Casey, Meygan and Kylie Rae for keeping me company, it was nice to have some familiar faces to hang out with :)


New things happening

There has been a TON going on this week-with Pipeline to a Cure, my heart as God calls me to be used in the CF world and use CF for HIS glory alone- Gods brought out some amazing opportunities... and so much more... I'll update tonight, stay tuned!

Love to all,

Wednesday, June 18, 2008

Meeting Kelly Slater!

Tuesday, I met Kelly Slater- 8 Time World Champion surfer!! I was waiting to post until I had some pics, (because posts are much more fun with pics) but I don't have them yet. I'll post those when I get them...for now, the story...

What a day! We ended up with about an hour and 15 minutes with Kelly, which is WAY more than planned- God totally provided for some good time to really get to know him, and him get to know CF (and me). He dove right into questions about CF, looking me right in the eyes and really wanting to know how it works, how the lungs are affected, what happens with surfing/salt water and how you die from it...And I give all glory to God when I say that I was able to hold myself together and be vulnerable in my answers as we talked.

I was surprised and blessed by him. He's a genuine guy, as my friend Jay put it, "he's legit". When he was asking questions, he was serious, and intentional- he wanted to really know CF, and was interested in all I was explaining.
After some questions, Kelly did a PSA to announce his involvement in Pipeline to a Cure (PTAC) and the Cystic Fibrosis Foundation. He's already got PTAC on his foundation website.

He did a PSA, and then we did a photo shoot with the two of us (pics to be posted later), and then, asked more questions He really wanted to understand CF, and we had a great time talking about everything from my portacath to the surf in the water (I can't believe I talked about the surf with the #1 world champ ;).

We finished with a conversation together on camera, to be used the night of the gala. I had the opportunity to thank him from my heart for his involvement with CF and share my joy for life with him. I was honored to have someone with such influence in the media and world supporting CF and supporting our event.

After a hug goodbye, it was all I could do to pray for him and just ask God to have spoken to him. I have no idea what impact was made, where his heart is...but I know that God was there with me, and His spirit was at work as Kelly and I talked, my prayer is that God was seen through my heart and attitude about CF. God is truly opening doors!
Pics to come sometime soon... ;)


Monday, June 16, 2008

Pray for Tricia

A dear friend of mine with CF, Tricia, is incredible... Just this past year, she went through a high risk pregnancy, delivered a micro-premie baby, underwent a double-lung transplant and she and the baby have recovered remarkably all by the grace of God's hands in this 10 month process!

I am asking for prayers for her. She and her husband just found out that she has Post-Transplant Lymphoma, a type of cancer that commonly grows when the immune system is low and many immuno-suppresant drugs are taken after a transplant. She just got this diagnosis, and is back in the hospital (mind you, just this year she lived at Duke University Hospital in NC for about 5-6 months)...

Please keep she, her husband and little baby girl in your prayers, if you get the chance. For more info about their story go to Nate's blog at Confessions of a CF Husband

Saturday, June 14, 2008

Waiting for Kelly Slater...

So...myself and a rep from CFF are supposed to meet with huge world-champion surfer, Kelly Slater...probably one of the best surfers of all time! He is supporting Pipeline to a Cure and Cystic Fibrosis, and wanted to meet with us to do a PSA to endorse PTAC and get to know CF a little more through getting to know me. We had plans on Friday but things got hung up and traffic got in the way for him, so as of now we're waiting to meet up with him- hopefully tomorrow.
I'm asking for prayers for Kelly Slater- that God would free up his schedule, that God would open his heart and if we can get time with him-- pray for God to really speak through me and give me opportunities in sharing my life with CF and how God's worked in me :)...

I'll let you guys know...but hopefully, some Kelly Slater time will be carved out tomorrow! Wow...I'm just amazed at the situations and doors God has opened.

Thursday, June 12, 2008

Hanging with Mickey Munoz

I should have posted this last week...but I didn't get the chance, oops!

Last week I got to surf with one of the most famous surfers in history- Mickey Munoz! He is now 70 years old and 100% on board with Pipeline to a Cure!

Mickey and I got to hang out and chat about my life with CF, he asked a lot of questions and wanted to hear all about the disease since he will be promoting it. I also got to hear some cool stories from all his surfing adventures and all of where life has taken him- what a cool guy! He was the first guy to surf Pipeline in Hawaii and is one of surfings biggest legends, I feel so honored to have surfed with him, wow.
I am so glad he will be involved with our event and I was blessed to get to know him- he was so down to earth, and has a huge heart, not to mention he rocks out in the water (thanks to Casey for letting me borrow his board so I could try and keep up with Mickey as he caught some awesome waves- it was fun to try a longboard!!)
Maybe i'll get to paddle out with him again soon, he's pretty awesome :)

Here's a pic of him I got off the internet (I just want everyone to see him- he's awesome)...sadly i forgot my camera with him, so maybe another time I'll get a picture with him.

A Day with Laird Hamilton & Dave Kalama

Another step in this adventure with Pipeline to a Cure!

Surf legends Laird Hamilton and Dave Kalama have decided to get involved and support Cystic Fibrosis. Tuesday afternoon, Laird, Dave, myself and a few members of the PTAC committee had lunch and did a video shoot and photo shoot for press release purposes...I am still in shock that I did this with such AMAZING surf legends!

Throughout the day, they asked tons of questions about CF, about my life, and I was open and honest about my life, faith and how I keep going through the day despite the amount of treatments and care I have to do. I kept my life pretty open and vulnerable, sharing all the ins and outs of CF- good and bad...and I also got the chance to share God and how HE is my source of strength through it all!

After lunch we did a PSA and some professional photos to be used for advertising and press for our event, so that was crazy to be filming and being in photos with these guys (they're so tall and huge! haha). But honestly, these guys were just a lot of fun, we really connected and they understood CF a lot more, it was pretty cool to hear them talk about CF and dive into the connection to surfing. Check out this pic from that day below! I think I'm still in shock at how big PTAC is getting, and God is definitely growing me in this process as I share my life with CF...more on that another time....
For now, good times were had with Laird and Dave, I am just blown away :). Pray for them and their involvement with CF- their endorsement and involvement in our event is huge!


Wednesday, June 11, 2008

The Purpose of this Blog...

I started this blog because God's been working a TON through my life with Cystic Fibrosis...I've been on a huge journey and God has really called me to be in ministry with the CF community and surfing community as I've been put in a place to work among both through my involvement with the CFF. I have become the "face" for Pipeline to a Cure
This event is connecting the CF Community and Surfing Community all for research and awareness of CF. God's put me in a unique position to be a light in both communities, and I don't want to take that responsibility why did I start this blog?

I want this blog to be a place where I can be open and honest about my life with CF, share my journey as Pipeline to a Cure takes off, share with friends, family and strangers about how God is working, ask for prayer and support as I journey through life with CF and in the ministry God has called me.
Thank you for being willing to support me and walk with me as I keep walking towards what God is calling me to!

I was reminded of this verse from a dear mentor in my life...
"You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again?...You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl, instead they put it on a stand and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Faather in heaven." -Matthew 5:13-16


Monday, June 9, 2008

Seattle (part 2)...

I promised some pics from my trip to are some from the CF Walk in Olympia! We had Team Emily in Washington :).
It was a beautiful day and we walked around a beautiful lake shadowed by the capitol building! Go team Emily in WA!!

Thursday, June 5, 2008

Goodbye CHOC, hello USC

After 3 months of fighting with the insurance, some angry letters and lawsuits threatened and tons and tons of phone calls (I am officially tired of Blue Shield's 'hold' music)...I am FINALLY approved to go to USC's Center for Cystic Fibrosis! YAY!!!

Thus begins a new chapter for me....I've been going to CHOC and staying at CHOC/St. Joseph's Hospital for 16 years and now, its time to embrace the fact that I am an adult with new CF challenges. I will be going to my first appointment in 2 weeks...I'll be meeting new docs, new nurses, be faced with new routines of care and treatment options. I ask for your prayers in this new (yet a little scary) adventure. I look forward to getting to know new docs and staff, and I'm praying I will begin to trust them as I trust my CHOC family :).
Check out USC's CF Center website, they are a great center for CF:

Nothing could ever replace the care and love I've received from Dr. Hicks and Dr. Nickerson and the many staff members at CHOC's CF Center. I am eternally grateful for their incredible care and attention to detail- its by God's grace that my family found this CF center a long time ago, we consider them a part of the Haager family as they've cared for me like a daughter. Thank you CHOC for a great 16 years, you will always be a part of my life and a part of my team.

Here's to a new adventure, USC Trojan style :)

Wednesday, June 4, 2008


This past weekend I spent the weekend in Seattle, WA with my sis and brother-in-law...It ended up being a beautiful weekend!
Julia and I got to spend lots of time together and enjoy a 'girls day out' with pedicures, a movie, some cupcakes...And then Julia had organized a team for the Great Strides walk in Olympia, WA! We spent the day around a beautiful lake, walking, talking and enjoying the sunlight with friends and the Devin family. I felt so honored to have another team walking for me!
When I get some pics from my sis, I'll post them- it was a great weekend :)

Monday, June 2, 2008

Praying for our troops

This weekend I had the joy of talking with my dear friend Eddie, stationed in Iraq. He is a wonderful friend of mine from Biola that was deployed 7 months ago and I haven't heard from him since! It was a huge surprise and awesome blessing to talk with him for a half hour- I heard about life there as a soldier and officer, and how he's doing. I'll admit, i'm pretty bad at keeping up on news and the war happenings, but talking with Eddie gave me a small glimpse of whats happening.

I was reminded to continually be praying for Eddie's safety, sanity, and endurance as he's working hard (sometimes not sleeping or even seeing daylight) for days on end. His friendship is a blessing to me, I am so grateful. He is a man of God, full of courage and strength....Lots of prayers and love for Eddie and the many troops giving up their lives and homes here in the US for us.