We knew this could happen. We knew this would happen. But really... it's not easy when it does. This week has been full of some fantastic highs and some hard lows. I know it is long, but if you take the time to read it, you will get a full picture on how Leah is doing. Here we go...
Memorial Day Weekend - Celebrating
We celebrated Leah's 7th birthday over the Memorial Day weekend. Starting off with Daddy coming home on her birthday after a week out of town. So much fun, so much activity. Leah had a blast and stayed up way way too late with her cousin on her birthday sleepover.
Tuesday - Flare-up & Phone Call
Leah was excited to head to school. The first graders were "going to camp" this week during school and doing all sorts of fun "camp" type activities. In the afternoon, the school nurse calls because Leah had started coughing a lot during recess and lunch. It didn't totally surprise me. We had noticed Leah's cough had started to increase a bit on Monday. So, we were on alert. She actually was able to finish the school day, but by the time she went to bed, her cough had significantly increased. Even Leah said, "I want to go to school tomorrow, but I don't think I should."
I also received a phone message from Dr. Akhter. He wanted to talk with me about Leah's culture results. At our last regular clinic visit in April, her throat culture at first came back the same as it has been in the past. After a couple of weeks, I received a call from our nurse saying that her culture showed a very rare amount of an acid-fast bacilli, which further testing confirmed to be NTM (Nontuberculous Mycobacteria). This is relatively rare among CF patients (only about 10%). Our clincic has only had a couple of CF patients that have had this. Before treating it, they do a repeat culture to see if it goes away on its own without treatment.
Leah had a repeat culture done May 12. Dr. Akhter was calling us himself to tell us the results, but I missed his call for the second time that day. Ugh... now, we needed to wait until the morning to find out.
Wednesday - Culture Results
We kept Leah home from school to watch her and increase her treatments. When I talked with Dr. Akhter, he confirmed what we were afraid of - Leah's repeat culture again tested positive for NTM. It is being sent onto a specialty lab in Cook County for further testing. He wanted to meet with us for a consultation to discuss further testing and treatment options. If you would like to learn more about NTM, please go to: http://www.cff.org/Adults/Germs/NTM/
Thursday - Consult & Tape the Principal to the Wall Day
When we met with Doctor, he talked with us about NTM. We were able to follow pretty well with what he was saying from reading up on it. Since NTM is not that common, there is no set protocol on how to treat it specifically related to CF. Doctor also said that this is a more troublesome bacteria - because it is hard to treat and it causes problems in the lungs (scarring, lung damage).
The first thing we need to do is determine if the infection is colonized (meaning it is present, but not causing problems) or if it is active (causing disease). Further testing is required to do this.
Our next step is for Leah to have a CT Chest Scan. It is scheduled for Tuesday, June 10. Doctor will be checking for enlarged lymph nodes and nodules. If that is not conclusive, he would do a bronchoscopy, which would allow him to do a culture on sputum taken from the lungs.
If either of these tests indicate the infection is causing disease, we would begin treating it with antibiotics for a minimum of 12 months. Doctor said we would continue treating it until we get rid of the infection and her culture comes back clean.
Doctor described this as a bump in the road. It happens and we need to deal with it. It is serious and it makes us cry out in prayer, asking God for protection over Leah's lungs, healing, and a cure. Oh, that a cure would be found soon, so that an infection like this will not be able to do the damage it is capable of doing.
On top of that, Leah is having a bit of a flare-up right now, which is most likely from allergies/asthma. Her PFT (Pulmonary Function Test) was lower than last time, which may be due to her asthma or the flare-up. Doctor wants us to increase her asthma medication. We are continuing all her other treatments the same, while adding an extra treatment during the day to help with her flare-up.
So, you can imagine my emotion when we took Leah back to school that day for a very special event that was held in honor of her. Thursday was Tape Mr. Munch to the Wall day. Mr. Munch is the principal at Leah's school (and he might just be the BEST principal in the world!) For every $1 a student brought in, they received a piece of duck tape to tape Mr. Munch to the wall. Why would Mr. Munch agree to such a crazy scheme? To raise money for the Cystic Fibrosis Foundation in honor of Leah!
I was completely overwhelmed (and cried of course) to see the love and support that the students and staff of Heritage Trail showed to Leah. That gym was completely electric with excitement as the kids were lined up to get their chance to tape Mr. Munch up on the wall. They raised over $1150! AMAZING!! Boy, oh boy, that is A LOT of tape. And, Mr. Munch was such a good sport. It took them over two hours to place all the tape on him. And then Leah got to move the stool out from under his feet at the end of the day. Yes, he stuck there!! Honestly, I think he was in a bit of pain by the time it was over... but he still smiled through it all (even after the secretaries and nurse smashed plates full of whip cream onto his face!) The kids loved it!
Words are not enough to say THANKS for such a wacky and fun way to raise money and help us find a cure. And it couldn't have come at a better time!
End of week - A Couple of Special Highlights
On Thursday, we also found out that our oldest daughter Hannah made it into the Troy Middle School Symphonic Band for next year! She is super excited about this. We love seeing her enjoy playing the clarinet and being part of the band community. She has natural talent and plays beautifully. We are so proud of her!
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.