NTM treatment update
"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.
Culture Results - Not what we wanted
We also received initial results from Leah's most recent culture and unfortunately, the NTM is present. We were hopeful that it was going to be negative as her March 14th culture continued to show no growth. But her latest culture, done April 11th, showed growth of the NTM once again. There is a chance that we could have missed it in the previous sample, maybe didn't get a good sample, or the infection came back. Either way, we know the infection is currently in her lungs.
While this is disappointing to hear, our nurse reminded and encouraged us to be hopeful and positive about the clinical improvements we have seen since starting this intensive antibiotic course of treatment. The reality is that this is a very resistant bug. We knew this going into treatment. Only about 50% see a culture conversion. But, many more see improvements in their clinical symptoms even if the infection is still present.
We have seen improvements - doctor says her lungs sound clear when he listens to her, her cough is minimal, and her lung function has improved from where it had been when we first began. Those are all positive changes that we praise God for. We will continue to fight this infection and pray for more healing as she continues treatment.
Leah is now in the continuation phase of the NTM treatment, which is expected to continue for the next 12-14 months. She is on two oral antibiotics and one nebulized antibiotic, in addition to all her regular CF treatments. She will continue to be monitored/tested regularly throughout the NTM treatment.
Great Strides - May 6
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.
You can follow the link to get more information, sign up to walk on our team, or make a donation.
NTM Treatment Update
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.
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.