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:
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....
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!
Grandma & Grandpa Drechsel
1/15/2017 08:47:18 pm
We love you and are praying for you, Leah Mary! You have a lot of courage and you will do well with this battle.
1/15/2017 08:53:15 pm
thank you so much and i love you to and praying 4 you guys to.
1/15/2017 09:21:59 pm
1/16/2017 08:19:03 am
thank you :)
1/16/2017 08:47:26 am
Praying for you sweet Leah as you FIGHT, FIGHT, FIGHT!!! Go God Go!!!!
1/16/2017 09:04:22 pm
that makes me very happy :)
Mary Lou Engel
1/16/2017 09:38:12 am
1/16/2017 09:25:39 pm
thank you i really needed that encouragement:)
1/16/2017 09:52:30 am
I'm praying for you, Leah! And for your whole family! I'm claiming the promises of Psalm 139 for you, especially verse 5 where David wrote, " You hem me in behind and before and lay Your hand on me." I can just picture God putting His mighty hands of protection completely around you, and then laying His healing hand right on you! I will keep asking our Great Physician for miracles for you, for all of you! 💜💜💜
1/16/2017 09:28:23 pm
thank you soooooooooooooooooooo much this means a lot to me :)
1/16/2017 10:34:31 am
Leah, sending you big hugs as you begin your treatment! You may be small but you are FIERCE and can tackle this! My family will be praying for you. God is with you, He loves you and will never leave you. God bless you. Xoxo
1/16/2017 09:33:23 pm
thank you ❤ :) :) :) :) :)
1/16/2017 10:38:19 am
Prayers and love sent to Leah. You got this girl.
1/16/2017 09:37:24 pm
I will miss you guys :(
1/16/2017 10:40:05 am
Leah, the Allison family is praying for you and your family. We'll be singing the fight song all week!! You are a super sweet, strong and feisty girl, and God's got this! ❤❤😘
1/16/2017 09:50:39 pm
thank you this means a lot to me especially at this time cause I am really scared but when everyone is encouraging me i don't really feel that scared anymore ☺:)
1/16/2017 10:46:39 am
You are always in our thoughts and prayers . GODS GOT YA go fight girl.
Bill and Betty Williams (Hannah's grandparents)
1/16/2017 11:33:29 am
Praying for you Leah and family!
Paul and Beth Drechsel
1/16/2017 01:18:55 pm
Leah, we're so sorry that you have to go through this, we know it will be hard. But we also know that God loves you and He is with you. He says, "Be strong and of good courage, for I am with you." We're proud of how strong your fighting spirit is. We will be praying for you!
1/16/2017 03:58:44 pm
Dear Leah & family,
1/16/2017 05:15:37 pm
Dear Leah and to your family, our family will be praying for you everyday. God will help you fight this. He's such a amazing big big God who loves you so much!!!
1/16/2017 09:03:42 pm
You will you will be in my thoughts and prayers daily sweet girl.
1/16/2017 09:50:41 pm
We are praying for you sweet Leah. Stay strong in the Lord and His mighty power. He has you in the palm of His righteous right hand.
1/17/2017 07:18:33 am
Leah, we have never met you, but know your parents from camp at Inspiration Ministries. We will be fighting with you in prayer.
David and Lindsay Hill
1/17/2017 08:56:45 am
Leah, Lindsay and I will be praying every morning and every night together on your behalf. God has this, and has you. I can see in your eyes a tenacious little girl willing to go to battle. Always remember you have an army of praying soldiers by your side and behind you. May the God of this army lead you into this battle- victory is at hand. We love you.
1/17/2017 10:00:13 am
You can do it Leah!! I have tremendous confidence in you! You are not alone ! You have a large group of people that are cheering and praying for you!! Good luck!!
1/17/2017 01:18:00 pm
Our staff at Evangelical Child and Family Agency are keeping you in our prayers. Your are a very courageous and strong girl!
1/17/2017 06:57:46 pm
Praying for you Leah! I've met you and your parents through connections at Grace Bible and I've prayed for you often. I have CF and so do both my kids (11 and 7) and all three of us also have tuberous sclerosis. Both Trey and Zoe started having seizures at 9 months old from the TS, so their TS is worse than their CF, but my CF is worse than my TS (I've never had a seizure, but I DID just have my left lung removed in October). God's got all of us in His hands! And since HE'S got this, you do too!
1/18/2017 08:43:15 pm
1/18/2017 09:01:53 pm
Leah, I attend church with your Aunt Susan & Uncle Mike and cousin Emma. Praying that God fills you with peace & confidence and that your recovery is miraculously quick & complete, that you will be a living testimony to our amazing God who holds you in the palm of His hand and loves you with an unfathomable love. Praying these things for you even now in the name of Jesus.
Uncle Dan and Aunt Deb
1/20/2017 01:06:33 pm
1/20/2017 02:11:48 pm
Praying your strength & steadfastness is found in the Lord Jesus. He will sustain you & your family. My heart aches for you to be in this fight. I will pray for all of you.
1/22/2017 08:56:32 pm
Cast all your anxiety on Him because he cares for you. 1 Peter 5:7
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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.