REGISTER AS A WALKER
If you are planning on walking with us, you will need to register as a walker either before the walk online or at the walk in person.

• To register online, go to http://fightcf.cff.org/goto/leahsfrontline and click on the "Join this team" button!
• If you plan to register at the walk, please send us a quick note to let us know you will be there!

TEAM SHIRTS
We will have our new team shirts available for pick up at the walk. They are expected to be ready this Thursday. Please contact me if you would like to pick your order up early.

DAY OF WALK

• Please plan to arrive early to register and turn in donations collected.
• Gather at our Leah's Front Line tent around 10am-10:15am.
• NEW this year - Circle Up for Prayer! If you would like to join us in prayer, we will circle up at our tent at 10:15am to pray for Leah and for a cure to be found! 
• We will take a Team Photo at 10:30am. We want to see all your smiling faces in the picture. Arrive Early!! Please!!
• As the walk kicks off, please gather up so our team can walk together!
• We walk rain or shine, so make sure to pack your umbrella/rain gear. Hoping for clear skies, but it's always best to be prepared!!
• Feel free to bring lawn chairs, picnic blankets, yard games for the picnic after the walk!

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Looking forward to a great day with you all! 

To celebrate our 10th year walking in Great Strides, we have a brand NEW Leah's Front Line team shirt design! Check out our new team spirit items available for sale at the following link:
http://leahsfrontline2019.itemorder.com

A portion of each sale will benefit the Cystic Fibrosis Foundation. All orders are due by Sunday, April 28 at 11:59pm.

For those who are local, please choose the pick up at walk delivery option and I will have the shirts available for pick up at the walk or after the walk if you are unable to be there. For those who are not local, please choose the shipping delivery option and your items will be shipped directly to you.

If you would like to purchase a shirt or sweatshirt with Leah's new design, please order soon! Feel free to wear either shirt design at the walk. We love when people sport Leah's Front Line shirts any day of the year!

Leah's Front Line is gearing up for our TENTH year walking in Great Strides to raise money and awareness for cystic fibrosis!! Please consider supporting us!

Cystic fibrosis is a disease that progresses over time and impacts Leah every day. It is a disease that requires hours of treatments and handfuls of medications for Leah. While we are so thankful for these medications that help Leah, we keep hoping and praying for a cure to be found. This is why we walk for Leah each year!

Please consider making a donation and joining our team today!​

To join our team or donate, please go to: www.fightcf.cff.org/goto/nordquistfamily

We would love for you to join us!! We want to be a strong Front Line to stand by our girl and spur her on as she fights this battle against CF. There is a spot for you on Leah's Front Line!

Hey all! This is our 10th year walking in Great Strides! Mark your calendar and come out and support us.

Whether you are new friends or friends we've known for years, our lives have overlapped and we are thankful for you! On this journey, words cannot express how much it means to us to be surrounded by such an amazing community.

Please consider joining us!

South Suburban Great Strides Walk
Saturday, May 11
Commissioner's Park, Frankfort, IL

Check In: 9:30am
5K Walk: 11:00am
Picnic lunch following

To join our team or donate, please go to:
www.fightcf.cff.org/goto/nordquistfamily

Since Leah's Front Line was established in 2010, our team has raised over $78,000 for the Cystic Fibrosis Foundation. THANK YOU! Your support means the world to us!

We will keep fighting to add more tomorrows for Leah and everyone living with cystic fibrosis!
Will you join us?

​As we continue to wait for Spring to come, Great Strides is quickly approaching. 

The year has already taken quite a toll on Leah as she needed to do her fifth hospital stay this March. Thankfully, she was home before Easter and is settling back into her regular routine. 

​For Leah, every day is a battle against this disease, requiring much of her time and attention.

But this is her normal. As she told me the other day, "I am just a normal 10 year old kid...with CF...with NTM...with Asthma." Her normal may look different than my normal, but at the end of the day she is a super creative girl who loves to have fun and play. 

Will you help us support Leah as she fights this disease? Every donation given helps us get closer to a cure for CF.

The South Suburban Great Strides walk is on Saturday, May 12 at Commissioner's Park in Frankfort.

Walk details:
Registration begins at 9:30am
**Please be at our Leah's Front Line tent at 10:30am for a team picture!!
Walk begins at 11am
Picnic lunch following

To join our team or donate, please go to:
www.fightcf.cff.org/goto/nordquistfamily

Thank You!

This one we saw coming... Leah had not been feeling good for a while, so we were pretty sure that we were headed for a hospital stay. Late Sunday night, Leah was admitted into the hospital for a cystic fibrosis exacerbation. We expect Leah to be hospitalized for a full two weeks to complete IV antibiotics and receive increased respiratory treatments. After looking at her x-ray and seeing the drop in her pulmonary function, doctor was glad we brought her in when we did. We are hopeful that the hospital treatment will help decrease some of the inflammation in her lungs, clear out the extra mucus, improve her lung function, and help Leah to feel better. 

As you may remember, Leah has been in the continuation phase of her NTM treatment for m. abscessus. She has been on three oral antibiotics and one inhaled antibiotic since March 2017. Doctor decided to administer the three oral antibiotics as IV antibiotics while in the hospital. However, we needed to stop the inhaled antibiotic due to continued hearing loss. Up to this point, her hearing loss had not been in the language sounds. Unfortunately, her latest auditory test showed hearing loss in the lower language sounds.

While Leah continues to feel a bit crummy, she has been in pretty good spirits. Even as she does her treatments, she likes to have fun and play games. Since Respiratory treatments take a while, she has been playing games, doing card tricks, or having play-do wars with her respiratory therapist. They each create something from a given theme and then they try to guess what the other person made. It can be quite amusing.

Can you guess what movie these play-do creations represent?​ (Hover over picture to find out answer!)

We appreciate your prayers for Leah and our family. Although we have learned some helpful lessons on how to navigate hospital stays from our past experiences, that doesn't mean it is easy. And sometimes, Leah refers to the hospital as her second home :( But we are thankful for a place with great doctors, nurses, and staff that care for Leah and our family. If you want to send a note or picture to encourage Leah, you can reply in the comments or send us an email.  

​Leah is super excited about rallying the troops for Great Strides this year! Please check out this video she made and edited!! GO TEAM!!!

This is the ninth year that Leah's Front Line has walked in the Great Strides walk. This year we will be walking in the South Suburban Great Strides walk on Saturday, May 12 at Commissioner's Park in Frankfort.

Please consider joining us!

We think of our team as being on the Front Line next to Leah, helping her fight this battle against CF! Whether you walk, talk, or look at the clock.... we want you to be part of her special day ;) 

To join our team or donate, please go to:
www.fightcf.cff.org/goto/nordquistfamily

Even if you can't physically join us, here are some of the other ways you can get involved:

• Be a virtual walker
• Make a donation
• Do your own fundraiser - Lemons for Leah, Clean your Closet for a Cure Garage Sale, Car Wash, Coin wars, School events... the list goes on and on. You can be as creative as you want!
• Pray, Pray, and Pray for our sweet girl and her fight against CF and NTM

Since Leah's Front Line was established in 2010, our team has raised over $75,000. THANK YOU! Your support means the world to us! We could not fight this battle on our own. We need you, and most importantly, we need God to lead the way. We are constantly calling on our God for strength and healing and hope. And we are continually blessed by the outpouring of support we receive from those around us.

We will keep fighting to add more tomorrows for Leah and everyone living with cystic fibrosis! Will you join us?

We are weeks away from the start of a new school year, and this year it means some big changes for Leah. She is moving from the elementary school to an intermediate school, which means changing classrooms, multiple teachers, changing in a locker room for PE, and hallway lockers!  A bit nervous we are...  But we have begun communication with her new school and are confident we will be able to make this a smooth transition for Leah.

BUT, before we move on... we want to express our gratitude to the AMAZING teachers and staff at Heritage Trail.  They made Leah's school experience a positive, fun, supportive, and overall GREAT experience.  To close the year, the graduating fourth graders paraded through the hallways of the school, being cheered on by all the younger students, sending them off on the very last day of school.  This brought tears to the eyes of just about every fourth grader, boys and girls alike, along with many of the younger kids.  It was an emotional day for all.  But it goes to show how much the kids love their school and will miss it!  Our kiddos are prepared and ready to tackle this next stage of life.   THANK YOU Troy Heritage Trail!  We love you and are so thankful to all you have done for Leah and our family!  

Every year, this day reminds us that we are not in this fight alone.  Neither the brisk weather nor the puddles on the path stopped us from being there, representing Leah, and joining with the other teams supporting their CF warriors!  We are so thankful to see our community support us and walk with us as we seek to raise crucial funds to support the amazing efforts that the CFF is doing to find a cure for CF!  It means the world to us!  Thank you!

If you would like to make a donation to support our efforts, it's not too late.  Please go to our Great Strides homepage.  Thank you!

If you are looking for a fun way to show support and raise some money for cystic fibrosis, consider doing this family friendly idea... LEMONS FOR LEAH!!!

Host a lemonade stand, possibly bake some goodies, and help us raise money and awareness for cystic fibrosis.  It doesn't take much to organize, but the rewards are great.  There have already been two LEMONS FOR LEAH this summer.  Who can resist buying a cup of lemonade from those cute faces?!  Especially for a good cause!  We called it a success, especially when we sold all our product! ​ If you decide to do a LEMONS FOR LEAH, let us know and we will do our best to support your efforts and stop by!

Our travels this summer first took us to Pittsburgh to celebrate Kathy's parents 50th Wedding Anniversary!  Our weekend celebration included going to a Cubs/Pirates game, in which the Cubs won!!  I'm not too sure all the Pirate fans appreciated having our group cheering in their stands, but it was a very fun and enjoyable night for us!  We also had a fabulous celebration dinner at Kathy's sister's home.  It was a great night, dining outside in their beautiful yard, hearing mom and dad share memories of their love story and honoring their marriage that demonstrates their faithful love to one another and our family!  It was a wonderful celebration that will be cherished by all of us. 

We continued our travels as we ventured down to Charleston, South Carolina to visit with Phil's family.  It had been a while since we had been there, so it was really nice to visit with them.  Despite our car breaking down as we drove on the breath-taking Blue Ridge Parkway, leaving us completely at the mercy of some good samaritans who helped us get to the next town... we did enjoy our visit and learned a couple of lessons along the way.

We just passed the six month mark in Leah's NTM treatment.  Leah is in the continuation phase of treatment, which includes three oral antibiotics and one nebulized antibiotic.  We are also doing three vest treatments a day, along with her regular inhaled and nebulized breathing treatments.  While it is not as intense as the initial IV antibiotic phase, it requires quite a bit of time each day, which is not fun for Leah.  Although Leah continues to be a trooper about her treatments, there is no hiding the fact that it is not easy on her.  But even with all the treatments, she doesn't let it slow her down.  

Unfortunately, she is still culturing the NTM.  We have not been able to get the infection out of her body.  While we have seen some clinical improvements, the chances of getting a culture conversion during this part of her treatment is not likely.  Although we knew from the beginning that the course of treatment was expected to be around 15-18 months, we have to consider whether it is time to stop.  We have been in conversation with her doctor concerning whether she is still benefiting from these medications or if she has reached her full benefit at this point, as well as wondering if we are increasing her resistance to these medications if they are not benefiting her anymore.  Legitimate questions with no known or definite answers. 
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At this point, we are continuing the current course of treatment as both her weight and pulmonary function were down a bit at her clinic visit last week.  Although she was so worried that doctor was going to admit her to the hospital, I'm not sure we got an accurate PFT (Pulmonary Function Test).  Either way, we are focusing on her diet and airway clearance techniques (ACT) to try to help her improve before we go back for a 2 week recheck.  Please pray for direction and guidance as we make decisions concerning her treatment plan. Pray also for Leah to be willing to fine tune her ACT while doing her treatments.  We want to see her grow in her active participation while doing these.

Last week, her auditory testing continued to show some decline.  While it still isn't impacting her ability to hear language sounds, this is concerning to us.  This hearing loss is most likely still a side effect from when she was on the IV antibiotics, as hearing loss can continue even after a medication is stopped.  Please pray that there will be no further decline and even some recovery as it is unknown whether this hearing loss is permanent.   
  

"I ain't got no needle in my chest, in my chest..."
We sang this song on Tuesday to celebrate Leah finishing THREE months on IV antibiotics!  It is a song we learned from Mary of The Frey Life (A video blog that follows Peter and Mary Frey as they deal with the ups and downs of life with cystic fibrosis.  Haven't met them personally, but enjoy looking at their vlog - they are real and inspiring and put their trust and hope in God).  Before you read on, you have to stop and bop your head to the beat and sing with us, "I ain't got no needle in my chest, in my chest...."  Yay!  Thanks for helping us celebrate!  

This was a busy week for Leah.  She did her last IV treatment Monday evening.  She was deaccessed on Tuesday, which means the needle was taken out of her port (not just to be changed, as it was each week during her IV treatments, but to be done for now)!  Yep, yep... I hear you singing it... "I ain't got no needle in my chest, in my chest..."  Even you, my grammar friends, let it go and just sing along and celebrate :)

And then, on Wednesday, she went back to school for partial days!  She was a bit nervous after being out of school for so long, but her teacher and class helped welcome her back.  She jumped back in and is doing well.  Since she was receiving homebound instruction, she is right on track with the class. 

I can't believe how quickly the Great Strides walk is approaching.  It is less than two weeks away!  Friends, I ask you... if you would like to come walk with us, please sign up and register as a walker for our team, or send me a quick email/text to let me know you will be there.  If you would like to support our efforts to find a cure for cystic fibrosis, please consider making a donation today!  Thank you friends! 

Here is a link to our Great Strides fundraising page.  
fightcf.cff.org/goto/philandkathynordquist
You can follow the link to get more information, sign up to walk on our team, or make a donation.

​THANK YOU!!