What doesn't change is the need to find a cure for cystic fibrosis!! While much progress has been made in finding new treatments that help manage this disease, no cure has been found.

So, to that effort, we invite you to join us in our goal to find a cure. We know these are difficult times, but if you are able, would you please consider giving a donation to find a cure for cystic fibrosis. 
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Leah started on the new CF modulator medication, Trikafta, in December. This is the first medication that we have noticed marked improvements for Leah! Her cough has been minimal, and we have been able to scale back her breathing and vest treatments from three times a day to two times a day. 

Because of COVID, instead of going in for our monthly CF clinic visits, we have been doing video visits with doctor and having a home health nurse come to our home to flush Leah's port and draw labs.

Although we followed the intensive treatment protocol to eradicate MRSA, Leah is still culturing MRSA, along with the NTM. 

Leah is almost weaned from the steroid that she started on during her last hospitalization in October when she was running those high fevers. While we still have no definitive answer as to what caused those fevers, her body responded positively to the steroids. Doctor started her on high dose ibuprofen to help her body adjust as she was weaned off the steroid. Hopefully she will be fully weaned with no fever relapse by the end of this month.

This update is a little overdue… but here we go!

Leah is doing much better since she was discharged from the hospital early November. However, the question remains: What is the cause of the high fevers she was having???

Currently, Leah is still on daily steroids to keep the fever at bay. When we tried to wean her off the steroids after the hospital, the fever came back. 

She has gone through a series of appointments and testing to get to the root cause. 
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• ABPA - testing came back negative. That is good, but doesn’t get us closer to the cause. 
• Rheumatology - Her rheumatology blood work looked good and after examining Leah, the rheumatologist has very low suspicion for rheumatology disease.  However, the rheumatologist would like to reevaluate Leah if the fever relapses after decreasing the steroid.  
• NTM - This is a possibility, but NTM does not normally present with high fevers.​

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Leah has created her own website to tell others about living with CF. Please check it out and let her know what you think:​

P.S. An update on Leah's health will come soon. 

We are happy to say that Leah is nearing the end of her stay in the hospital! The plan is for Leah to be discharged on Sunday afternoon after completing the 14 days of IV antibiotics. After spiking high fevers every day for ten straight days, Leah has been fever free since Monday morning!

On Sunday, Leah had a CT scan done. Thankfully, the scan showed no new NTM changes. The inflammation seen is most likely due to the acute pneumonia infection or possibly ABPA.  On Monday, Leah had a bronchoscopy done. Doctor took a sputum sample from her lungs, which has been sent out for testing for all sorts of bacteria, viruses, and fungi. We are still waiting on the lab work to help us determine what is the underlying cause of this exacerbation and any further treatment we need to start or consider.

Doctor also did blood work to test for ABPA (Allergic Bronchopulmonary Aspergillosis). ABPA is an allergic reaction to the fungus aspergillus that causes inflammation (as an immune response) in the lungs. He decided to start treating her for this with steroids. If the tests come back negative, he will take her off the steroids, but if positive, we will have already started treating her.

Thankfully, this treatment seems to be helping. Since she started with the steroids, she has not had a fever. This is not confirmation on whether or not she has ABPA, but it is helping her to recover from this exacerbation of her CF.  Doctor says she sounds clear and is not hearing crackles in her lungs. Her chest x-ray from Wednesday looks 60-70% better than when she was admitted to the hospital. So those things all point to her moving in the right direction!

If Leah does test positive to ABPA, that will be one more condition causing further lung disease for Leah. Please pray for healing and wisdom for next steps in how best to treat Leah!
 
We are looking forward to going home soon, especially since starting today, no visitors under the age of 18 are allowed due to flu season, which is always hard on Leah and her sisters. On a lighter note, we have added additional pipe cleaner people. Can you guess who these creations represent? See captions below the pictures for a hint.

 It has been a rough start to the school year for Leah. She has not been feeling good. After being in and out of school, she started running high fevers last Saturday, leading to her being admitted to the hospital late Sunday night with bacterial pnuemonia.  She will stay in the hospital to receive two weeks of IV antibiotics, along with increased respiratory treatments.  She is on day 5 of 14. 

As our team of doctors treat Leah for her acute sickness, we have been trying to identify the source of this infection so we can treat it better. However, her cultures continue to show the same bacteria she normally cultures. So we have been discussing how best to proceed forward.

Please pray for healing for Leah. She has been pretty miserable as she continues to spike really high fevers two to three times a day, often taking two hours or longer to bring her fever down. In between fevers, she gets some relief and perks up quite a bit, acting much more like herself. Since fevers are our bodies way to fight infection, we know Leah is fighting hard against this infection.  Still we would prefer to get these fevers under control.

On a lighter note, we have made a new game with pipe cleaners in Leah's room. Child life volunteers bring Leah crafts and activities to help make her time more enjoyable while at the hospital. The other day she was given two packages of pipe cleaners. So naturally there are now tiny pipe cleaner stick figures hiding around her room for visitors to find. So make sure you are ready for a quick game of "Where's Waldo?" if you plan to visit :)

I have been meaning to send out an update on how Leah is doing health-wise, but I was hoping it was going to be a little different than where we find ourselves today....

Leah missed the last two weeks of school as she was home sick. Even with increased treatments and oral antibiotics as home, she did not get better. So as her classmates were finishing their last day of school, Leah was coming in to see doctor. After a quick examination, he decided to admit Leah to the hospital so she could receive IV antibiotics to treat her CF exacerbation.

Leah had been running a fever on and off since Tuesday. But the pattern seems to be going down, so we are hoping to get through a whole day without one. She is able to move around her room and play more when her temp is down.

Doctor thinks this infection is most likely bacterial (still waiting on results from her culture to see if it will tell us anything specific about what we are fighting), rather than her NTM acting up, because it appears to be localized and her x-ray does not show NTM changes. 

Leah will be at the hospital to complete a full 14 days of IV antibiotics. Two days down, twelve to go! Although being in the hospital is not fun, she is a good sport about it because she knows she will feel better when she is done. With school being out, it makes it easier for her sisters to visit, and that's especially nice because today is Bekah's birthday!  We appreciate prayers for Leah to feel better and recover quickly from this lung infection.

As many of you may remember, Leah has a NTM (Nontuberculous Mycobacteria) infection, specifically an mycobacterium abscessus infection. Basically another lung disease on top of her CF. This infection also happens to be an extremely hard to get rid of because it is known to be highly resistant to most antibiotics. 

Back in January 2017, we began treating her NTM infection with three months of IV antibiotics, followed by 18 months of oral antibiotics. Unfortunately, we were unable to rid her body of the NTM. Last September, we decided it was time to stop the antibiotics and give her body time off antibiotics.  With the hope that the next time we try to tackle this infection that there may be newer more effective treatments available.

With Leah being in the hospital right now, Dr. Akhter asked an infectious disease doctor at the hospital to consult with us on her case. He is newer to the Advocate family, but in his previous experience he has treated a couple of CF patients with the m. abscessus infection.  We are interested to hear what insights he might be able to bring to our treatment team.

Please keep praying for complete healing of Leah's body and especially of the NTM.

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?