We had a rainy, but good day walking in Great Strides this year! Thanks to all who supported our efforts by walking and donating!
It's not too late to donate! Click here to make a donation. Thanks!
We did our walk at Hammel Woods, the walk site from the very first Great Strides our team walked in! Such sweet memories... Check out this video from ten years ago for a little Throwback Thursday:
As Leah is getting ready to graduate from eighth grade, it was so fitting that we had two Troy teachers walking with us this year! One from her first year at Troy (Kindergarten teacher Mrs. Buell) and one from her last year at Troy (8th grade PE teacher Mrs. Wasag)!
Over the years, we have had so many Troy teachers and staff be part of our team in different ways, from walking with us at Great Strides, making donations, hosting movie nights, and the wackiest of all: Tape Mr. Munch to the Wall! All of these done in honor of Leah to help find a cure for cystic fibrosis!
Troy has been a great experience for Leah! Between all her wonderful teachers and the amazing staff and nurses, she has been well taken care of! Thank you teachers and staff at Troy! We appreciate all you've done for Leah and our family!
Thankfully, Leah has been doing well this year healthwise. She has had no hospitalizations, no sickness, no exacerbations, no COVID... a healthy year! Praise God!
Another HUGE update - Leah has not cultured the NTM infection since Jan 2020! We don't know if that means the infection is gone, but it is promising! And it appears that the infection is not active right now, so we will take it! Praise God!
Leah started on Trikafta (the latest modulator medication targeting the underlying cause of CF) in December 2019! Notice the start of Trikafta and the possible conversion of NTM... connected? Possibly. Either way, we are so thankful for these new medications and treatments that are helping Leah as she battles her CF!
We have so much to be thankful for! Including all of you!
Virtual Great Strides ~ Saturday, May 15
THIS SATURDAY is the Great Strides (Virtual) Walk!
While this year will look different than the past, our mission is still the same:
Raise money to help find a cure for Leah and all those with cystic fibrosis!
How can you be part of Great Strides this year?
We are grateful to have you as part of our community.
As Leah's Front Line, we stand next to Leah as she battles CF everyday. Please consider joining us!
Today is a day that normally would find us surrounded by family and friends walking to raise money to find a cure for cystic fibrosis.
However, like many other special events, the South Suburban GREAT STRIDES walk is cancelled, possibly postponed (date TBA) due to the COVID-19 pandemic. But there will be a virtual event on June 5th to celebrate the CF Foundation's 65th anniversary!
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.
Health update on Leah
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.
Dealing with COVID-19
I'm pretty sure that none of us could have anticipated a global pandemic shutting down the world this year. Thankfully, our family has been healthy so far! With two daughters suffering from chronic diseases, we have embraced what it means to shelter at home during this time. Like you, we have needed to adjust to this new way of doing life.
We have discovered Instacart and Walmart pick up (which requires planning ahead but is so worth it!). I don't think I'm going back, even when things get back to normal.
We have mourned the loss of many special events/activities, especially as Hannah is finishing her senior year of high school - musical, senior awards, last concerts, award/end of the year banquets, prom, and graduation, with all events being cancelled, postponed, or moved virtually.
BUT... we have also discovered some blessings like having extra time as a family, especially as Hannah is getting ready to go to college next year. We have been enjoying walks, playing games, and watching probably too many movies. But we are doing it together at a slower pace than we usually have.
Hang in there friends! God is in control always! You can put your trust in Him and embrace each day! Sending you our love!!
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.
A Positive Note: New CF Drug becomes available - TRIKAFTA!
On December 8, 2019, Leah started Trikafta. Some of you may be aware of the waves this most recent CF medication has made in the news. This has been the most promising drug released so far. Trikafta is a CFTR modulator, which means it works by helping to correct the gene defect that causes CF. This is the third modulator medication Leah has been on, and by far, the one that we have noticed the most response for Leah. Leah’s PFT went up 10% since she started on the medicine and is the highest it has been since last August!
We want to thank you, our community, who has supported us over the years to help fund the research and development of these medications that are making a difference in the CF community! THANK YOU!!!!
Leah's Front Line is registered for the 2020 Great Strides walk! You can register today and join us!
Denver Consultation with NTM experts
Back to figuring out the fevers… with the decline Leah had in her health as she was fighting these fevers, it became clear that it was time to address the possibility of Leah’s NTM being the main culprit of these fevers. So, doctor referred Leah to do a consultation with leading NTM experts in Denver, CO.
This past week, we headed out to Colorado. The appointments went really well. We believe having both Dr. Martiniano and Dr. Daley involved in Leah's care will be of tremendous benefit as we move forward in monitoring and treating Leah's NTM. Their level of expertise and experience in treating patients with NTM is reassuring that we will be good hands. It was really good to hear from them some of the medications and treatments that are in the pipeline and being investigated. It gives us hope for more effective treatment when the time comes to start treating again.
They both said the fevers could possibly be from the NTM.
Talking with both of them, we have identified symptoms that would indicate the need to restart NTM treatment as well as discussed in general what that treatment would look like.
Plan Moving Forward
Follow the Yellow Brick Road
On a personal note, we have musicals in the air at our house. Leah is a munchkin in the Wizard of OZ musical at her school. Hannah is a big kid and a salsa judge in the Matilda musical at her school. Both girls are super excited to be part of these productions. If you are looking for some fun, quality family entertainment or a date night with your special someone, the Wizard of OZ will run March 5-8 and Matilda will run March 13-15. Love to see you there!
Introducing Leah's New Website...
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....
In the Hospital with a CF Exacerbation
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.
The Great Strides walk is this SATURDAY! We are so blessed to be surrounded by family and friends and the greater CF community every year as we walk to find a cure for cystic fibrosis!
Would you consider supporting our efforts and making a donation to help CF stand for Cure Found?
To donate, please go to:
We would LOVE for you to be part of this day! Please come join 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
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.
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
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:
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!
We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows.