This is my Fight Song...Beginning NTM treatment

Leah's been singing Fight Song this weekend, thinking about making up her own fight song, knowing she is getting ready for a BIG fight!
      This is my fight song, take back my life song, prove I'm alright song
      My power's turned on, starting right now I'll be strong... Cause I've still got a lot of fight left in me

​Here we are... ready to tackle the NTM infection that has no business being in our little girl.  To do this, Leah has to be strong and courageous and ready to FIGHT.  It is going to be intense and very hard on her body, but it has become clear that it is time to begin treatment.

Although Leah has cultured the NTM (Nontuberculous Mycobacteria, M Abscessus) since April 2014, up to this point there was not enough evidence indicating an active infection to begin treatment, as the treatment is very intense and taxing on the body.  But since her pulmonary function dropped significantly in October and did not improve with treatment of the typical CF pathogens, which included three weeks of IV antibiotics, along with other clinical symptoms (increased cough, fevers, not feeling well), doctor strongly recommends beginning treatment at this time.

​Recommended treatment for M. abscessus pulmonary disease in CF involves two phases:

• Initial Intensive Phase (up to 12 weeks): 2-3 IV antibiotics and 1 oral antibiotic
• Continuation Phase (up to 15 months): Inhaled antibiotic and multiple oral antibiotics

Total length of treatment is expected to be approximately 18 months.  Length of treatment is determined by if and when we get a culture conversion to negative.  She needs to continue treatment for 12 months after culture conversion.

We begin treatment this week.  On Tuesday, January 17, Leah will have a central line port placed and be admitted into the hospital to begin the initial intensive phase of treatment.  We expect to be in the hospital for probably about a week as she begins her IV antibiotics to monitor how she handles the different medications.  We will continue the intensive phase of IV medications at home, with close monitoring/testing for culture response and drug toxicity.     

We are still not sure what this means for her schooling during the initiation phase.  We are considering homebound instruction or partial days, depending on how the medications affect her and what the treatment schedule allows. 

As a show of support, would you take a few minutes this week to let Leah know she is not alone in this fight. Maybe....

• Take a picture in your Leah's Front Line shirt
• Share a picture of you and Leah or you supporting Leah
• Make a poster/sign
• Share an encouraging word
• Write a fight song for Leah

It can as simple or extravagant as you want.  Post it on our Leah's Front Line facebook page or email us and Leah will see it!! Let's send her some love and encourage her that she has many who love her and are standing by her as she fights this infection! 

And please pray!!  Bottom line is we are desperate to see God's hand of healing move and restore Leah's health.  Our family has witnessed first hand God's miraculous healing this year... and we are on our knees praying for a another miracle of healing for Leah.  This is a very serious infection and is known to be highly resistant to treatment.  Please join us in praying for the medicine to be effective and eradicate this infection from Leah's lungs.  Please pray for our faith to be strong and our trust and confidence to be firmly in God as we go through this time!