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.
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.