​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!!

 We are nearing the end of week 11 of Leah's NTM treatment.  Here is where we stand....

Promising news - As of Friday, her sputum culture from March 14th has shown no growth of the NTM (fifteen days reporting).  We are pleased to see this, as usually we see the NTM show up within 5-7 days.  However, results will not be finalized for another couple of weeks.  If it continues to be negative, this would count as her first negative culture.  Culture conversion is defined as three consecutive negative cultures. 

One of the IV medications that Leah was on is known to cause hearing loss.  Every two weeks, Leah was having her hearing checked.  Her hearing was super good when we started and we had been seeing a gradual decline (not in the language range, but in really high pitch sounds) each time.  Doctor was hoping it would level off, but since it continued to decline significantly in those ranges, we could assume that it would trickle down into the language sounds if we continued on the medication.  After being on the IV Amikacin for 9 weeks, we needed to switch her to the nebulized form of the medication.  We will continue to do auditory testing regularly as it can still cause hearing loss, but it shouldn't effect the hearing to the same degree as the extremely high dose she was on with the IV.

Leah is still on the other IV medication and will finish out the full 12 weeks on it.  But when we switched her to the nebulized form of the Amikacin, we added in two more oral antibiotics, which we will continue throughout the duration of the continuation phase of her treatment.  In total, she is on 5 different antibiotics right now.  

We had a bit of a scare as we entered Spring Break.  The day after we switched her to the nebulized Amikacin and added the two heavy duty antibiotics, Leah got sick with a high fever.  Doctor thought it was most likely viral, however, since it was persisting, we had to consider if it might be an infection in her central line or a drug fever from the medications she was on.  Thankfully after 5 days, her fever went away, but she was completely worn out, had increased cough, congestion, and was barely eating.  After a couple more days, she started to bounce back and we are being really careful not to push her too much.  Doctor said it can take up to 2 weeks to completely recover from the virus that hit her.

Needless to say, spring break was not exactly fun for Leah.  But we are glad that she is starting to feel better and able to do a bit more now!

We are also getting ready for the Joliet Great Strides walk on Saturday, May 6th!  This will be our 8th year walking to support the amazing work that the Cystic Fibrosis Foundation is doing to improve and extend the lives of those living with CF.

We are thankful for the amazing breakthrough treatments that are now available, becoming available, and in the pipeline for the future!  The CFF is committed to Leah, our family, and the thousands of others impacted by CF.  They will not stop until a cure is found for everyone with CF!  And we want to be part of this.  Please consider joining us!!  Your support means the world to us!

To donate or join our team, please click here.

As we complete week 8 of the intensive phase of Leah's NTM treatment, we wanted to give you an update on how she is doing...

Overall, Leah is doing great!  Her body continues to handle the medication well.  Thankfully, she has not had any significant side effects thus far.  The treatments are not slowing her down at all, in fact, she seems to be doing better than when we began.  Her cough is minimum, she has been fever free, her pulmonary function is a bit higher than it had been Oct-Dec, and overall she is feeling better.  At her last visit with doctor, he didn't hear any crackles in her lungs!!  That was super exciting to hear.  Crackles in the lungs indicate infection, and we haven't had a clear sounding lung report from doctor in a long, long time.  
​
​Even though we are seeing good results clinically, her first culture taken at 4 weeks continued to test positive for the mycobacterium abscessus.  So the stubborn infection is still hanging on.  Her next culture will be taken this Tuesday.  We are hoping and praying to see a culture conversion, which would be a negative culture not showing any of the m. abscessus growing in it.  
​
She is receiving home bound instruction through a teacher from her school.  This has been helpful in keeping her caught up with her school work while giving us time to take care of Leah's treatments, doctor visits, lab work, and tests.  Plus, it has helped keep her healthy and away from all those icky sickness bugs that have been very prevalent around here lately.  

Leah is our strong girl and she is a fighter!  We have been blown away by the amazing support she has received as she fights this infection.   So many have reached out and showered Leah with their love and support!  Here is a sampling of the support that she has received...
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Leah's friends from Awana sent this picture to cheer her on, along with a big manila envelope filled with valentines for her.

Leah's aunt made this amazing piece of art with Fight Song written out... Love it!

This February, Leah was completely showered with gifts and cards from the amazing ladies of Epsilon Sigma Alpha, a service and leadership sorority at Illinois State University.  This kind and generous group of 300 incredible women gathered three overflowing bags of goodies (coloring books, games, stuffed animals, and more) for Leah.  They also sent words of encouragement and support through a huge pile of notes/cards letting Leah know that she is loved and supported by this awesome group of women.  Reading over the cards made our hearts full of joy and happiness!  Thank you, ladies!  You made our day better through your extravagant kindness. 

Our church has loved on us in so many ways - prayers, hugs, gift cards/money, and even brand new lofts for our girls made by one incredibly generous and talented family!  We are so very thankful to be part of this loving and supportive community!  

Thank You! We appreciate all the prayers and support everyone has shown Leah and our family!  Thank you!

Leah came home from the hospital late Monday.  It is nice to have us all under the same roof! Please pray for us as we transition home.  We met with home health to get Leah's IV medicine set up at home.  We are working on getting home bound instruction started with Leah's school.  We appreciate all your prayers and cheers as Leah continues her NTM treatment at home!

Leah has been taking her medications like a champ.  She seems to be adjusting and handling the medication well.  Her port site is still a bit sore, but is starting to heal.  We expect to be discharged on Monday.  We will continue her IV/oral medication regimen at home.  

Leah got to go outside for a little bit this afternoon and enjoy the spring like weather while visiting with her cousins.  We took a walk by the Ronald McDonald House across the street from the hospital.

Thank you so much for all your prayers!  We are blessed to have so many praying for Leah and our family as she tackles this NTM infection.

Although Leah has cultured the NTM (Nontuberculous Mycobacteria, M Abscessus) since April 2014, up to this point there was not enough evidence indicating an active infection to begin treatment, as the treatment is very intense and taxing on the body.  But since her pulmonary function dropped significantly in October and did not improve with treatment of the typical CF pathogens, which included three weeks of IV antibiotics, along with other clinical symptoms (increased cough, fevers, not feeling well), doctor strongly recommends beginning treatment at this time.

​Recommended treatment for M. abscessus pulmonary disease in CF involves two phases:

• Initial Intensive Phase (up to 12 weeks): 2-3 IV antibiotics and 1 oral antibiotic
• Continuation Phase (up to 15 months): Inhaled antibiotic and multiple oral antibiotics

Total length of treatment is expected to be approximately 18 months.  Length of treatment is determined by if and when we get a culture conversion to negative.  She needs to continue treatment for 12 months after culture conversion.

We begin treatment this week.  On Tuesday, January 17, Leah will have a central line port placed and be admitted into the hospital to begin the initial intensive phase of treatment.  We expect to be in the hospital for probably about a week as she begins her IV antibiotics to monitor how she handles the different medications.  We will continue the intensive phase of IV medications at home, with close monitoring/testing for culture response and drug toxicity.     

We are still not sure what this means for her schooling during the initiation phase.  We are considering homebound instruction or partial days, depending on how the medications affect her and what the treatment schedule allows. 

As a show of support, would you take a few minutes this week to let Leah know she is not alone in this fight. Maybe....

• Take a picture in your Leah's Front Line shirt
• Share a picture of you and Leah or you supporting Leah
• Make a poster/sign
• Share an encouraging word
• Write a fight song for Leah

It can as simple or extravagant as you want.  Post it on our Leah's Front Line facebook page or email us and Leah will see it!! Let's send her some love and encourage her that she has many who love her and are standing by her as she fights this infection! 

And please pray!!  Bottom line is we are desperate to see God's hand of healing move and restore Leah's health.  Our family has witnessed first hand God's miraculous healing this year... and we are on our knees praying for a another miracle of healing for Leah.  This is a very serious infection and is known to be highly resistant to treatment.  Please join us in praying for the medicine to be effective and eradicate this infection from Leah's lungs.  Please pray for our faith to be strong and our trust and confidence to be firmly in God as we go through this time!