No Ordinary Infection
Our summer has been filled with doctors visits, praying, diagnostic tests, praying, waiting, praying, research and more praying. Well... I wish we had better news to report to you. However, Leah has been diagnosed with an NTM (Nontuberculous Mycobacteria) infection, more specifically, a mycobacterium abscessus (also known as m. abscessus) infection.
This is a very serious infection and the treatment is extremely intense and taxing on the body. Therefore, there are a series of steps to go through to diagnosis this infection and determine whether or not she has an active infection. Here is the process we have been through this summer after having two positive NTM cultures.
Lots of questions... not very many answers
After our appointment with Dr. Collins and Dr. Akhter on July 3rd, we were pretty sure that we were going to start treating this NTM infection soon. The treatment for this NTM infection is very intense. It involves 2-3 weeks of IV antibiotics, followed by oral and nebulized antibiotics for probably at least a year, in which she would be on multiple antibiotics at a time. This particular infection is known to be extremely resistant to treatment.
During the weekend, we spent time talking and praying and asking more questions and praying and asking others to pray. We put a call in to doctor on Monday with a list of questions. Since this is a rare infection, there's just not answers to many of our questions. We specifically wanted to ask if we could consult with other CF doctors who have treated patients with the m. abscessus infection.
Leah is Dr. Akhter's first patient to have multiple positive NTM cultures. He has had two bronchiectasis patients who have had one positive NTM culture, but their repeat culture came back clear. Leah is also Dr. Collins first patient with this infection, although a doctor she works with has seen one or two patients with it. Dr. Akhter also consulted with Dr. McColley (the director of the CF Center at Lurie Children's Hospital in Chicago) and she has not had any patients with this before.
Dr. Akhter contacted Bruce Marshall (the head of the medical branch of the CFF). He said most centers have probably only seen one or two CF patients at the most with this infection. He suggested contacting Dr. Scott Sagel (the director of the CF Center at Children's Hospital Colorado - which appears to be the leading experts in NTM and is the pediatric equivalent to National Jewish for adults). Dr. Sagel responded to Dr. Akhter and put doctor in contact with Dr. Stacey Martiniano, who is also at Children's Hospital Colorado and known as the local CF NTM expert.
They both recommended NOT starting treatment on Leah right now, but to watch her closely. Since she is so healthy right now, not showing any symptoms of having an active NTM infection, and the treatment requires being on 2-3 antibiotics for years, it is their professional opinion to watch Leah closely to see if the disease is active. They said the slow clinical progression of the disease would not put Leah to harm.
To watch Leah closely, we will be looking for any clinical changes (decline in pulmonary function, changes in chest x-ray or CT scans) or symptoms that might indicate disease (increased cough, fever/night sweats, weight loss). We will have appointments every 6 weeks. We will do a PFT (Pulmonary Function Test) at each appointment, a chest x-ray every 3 mos (when CT Scan is not done), and a CT Scan done every 6 to 12 months.
If she starts showing any of these changes or symptoms, we will first try to treat any of the typical CF pathogens Leah may have (she has cultured both staphylococcus aureus and haemophilus influenzae for years) before starting NTM treatment. Doctor said that he will be able to consult with both Dr. Sagel and Dr. Martiniano on Leah's case.
For those interested in learning more about the m. abscessus infection, we would be happy to pass along some of the medical articles we have been researching. Let us know and we can send it to you via email. Here is a link to information on NTM infections from the CFF: http://www.cff.org/Adults/Germs/NTM/
How are we doing?
This summer has been a bit crazy for us. We have been praying for a miracle. Honestly, we don't feel very confident in the treatments available for this infection, so we are convinced that we need to trust God with our little girl. We are praying that Leah will know how much God loves her as she goes through this. We are asking for God to work in a mighty way and take away this infection and heal Leah from this NTM disease. We know God is able to do what seems impossible to us. We are praying and trusting in him.
As far as in how Leah is doing... she continues to look great and is not showing any outward symptoms. It is hard to believe this infection is inside her little body. Honestly, we are very concerned about the impact of this infection. We need your prayers and support as we go through this.
We are thankful that it has not slowed her down at all. She is fully taking advantage of her summer, playing with her sisters and friends, running around, swimming in our pool, reading new books, even going on all the water slides at the water park! Please keep our little girl in your prayers!
7/15/2014 08:58:46 am
My prayers are with you Phil.
7/15/2014 09:02:31 am
Oh, I am so sorry to hear this!!! I will continue praying. I will also add her to our congregational prayers and prayer chain! God Bless<3
7/15/2014 09:09:36 am
The pictures of Leah are adorable. I can hear her giggling. It is so hard to remember how sick she is because she is always smiling and laughing. I thought of her yesterday and prayed for her and will continue to pray for the healing of her little body. God bless your family.
7/15/2014 11:11:57 am
I've been thinking about a all of you all summer and praying that no news meant good news. I'll continue to pray for her to stay happy and get healthier by the minute! I know her smiley and silly personality will help fight off this infection! Miss her like crazy :)
7/15/2014 11:47:44 am
Prayers and hugs! Love ya.
Katie & Makayla Anderson
7/15/2014 01:33:43 pm
Sending prayers and love to your amazingly special little lady. Your family continues to be in our thoughts and prayers. God bless!
7/15/2014 02:27:35 pm
Please be assured of our prayers, Phil and Kathy. The Missions Committee meets the 3rd Thurs. of every month, and prays for the more serious needs of our missionary family. We will watch for updates and answers to prayer.
7/15/2014 03:21:20 pm
We are so saddened by this news. I am glad you have the best experts out there helping you along this path. Our thoughts are with Leah and all of you.
Liz, Tony & Erin Linder
7/15/2014 08:59:16 pm
We are praying and believing for a cure! And we are praying for you all! May you be continuously surrounded by God's love and grace and know peace that defies explanation!! ♡♡♡♡♡♡♡♡♡♡♡
David C Hill
7/16/2014 04:19:37 am
Phil, Lindsay and I will be praying for Leah's healing, specifically of the infection and all side effects of past treatments. We will also be praying for your endurance and persistence as we wait for God to respond.
7/16/2014 09:48:21 am
Kathy - Leah and all of u are in my thoughts and I am here for u and your family...if u need anything at all please call me. I was happy to read they she hasn't let this slow her down or stop her from enjoying summer...what a great kid! Xoxox
7/16/2014 10:27:58 am
Praying for you and especially Leah
Mary Lou Engel
7/16/2014 10:42:31 am
Phil and Kathy,
7/16/2014 10:45:21 am
Omg! I'm truly sorry to hear that your family has to go through this. CF sucks! We will keep your family in our prayers. Leah is a strong little girl and she will fight this terrible disease!!! Please if you need anything, PLEASE call.
7/16/2014 12:10:05 pm
I am so sad to hear about this infection! I am believing God for a miracle too!
Aaron and Jenni Koehler
7/16/2014 12:19:03 pm
We are praying for sweet Leah and for your family! We love you guys!
7/16/2014 12:25:46 pm
So sad to hear this news. Such a horrible thing happening to such a sweet little girl. Sending our thoughts and prayers.
7/16/2014 12:42:27 pm
Praying for you all!! Lots of love for a wonderful family!
Kraig & Sandi Tripp
7/16/2014 01:02:24 pm
We are praying for Leah! That God will perform a miracle we know he can.
7/16/2014 01:50:20 pm
I don't know you guys, but as a parent, this story touches me. I will be praying for all of you!
7/16/2014 02:29:39 pm
Praying for Leah and your family! So sorry to hear about this. What a brave strong girl!
7/16/2014 03:20:00 pm
You can bet that I am praying and will pass on the request to many!! Much love, peace , and strength coming your way.
7/16/2014 03:24:33 pm
So sorry to hear of this infection. We will be praying for Leah! I love the pictures and being able to see her sweet spirit in them.
Matt, Michelle, Casey, Kylie, and Corey Jackson
7/16/2014 03:31:49 pm
We are sending our thoughts and prayers to your family. May God bless all of you!
Jim and Linda
7/16/2014 03:51:28 pm
We are praying for ALL of you...but especially Leah! We are praying for a miracle...knowing that He is able to do exceeding abundantly above all that we could ask or think!!
Gerilyn (Gordon) Harris
7/16/2014 04:49:03 pm
Praying for you and Leah, Phil. I cannot imagine the angst you must feel at times. I pray that the God of all Hope guards your hearts. He cares for you and your family. By His stripes we are made well!!
Paul & Julie
7/17/2014 12:02:55 am
Praying & believing with you for Leah's healing & continued good health! We are looking forward to seeing all of you in Charleston in August! We love you!
Ellen Clayton Allen
7/17/2014 04:01:01 pm
What a precious, brave little girl! I believe in miracles, so that is what I am praying for Leah. I pray for strength for your whole amazing family. Love, Aunt Ellen
Tom and Kati Ratz
7/17/2014 04:43:56 pm
We are praying for Leah, as well as a cure for this infection. We pray for Gods healing hand. You all are such a blessing, and such a beautiful example of Gods power and love in such hard circumstances. May God protect , heal and give you peace and comfort and healing, as you deal with things day to day. Just love her contagious smile :))
7/20/2014 02:05:58 pm
May the Lord continually give you His strength and His peace, hold you all close as you journey through this heartache. May He send you JOY in the midst of it and bring healing. God be with you. Our prayers go out on your behalf.
Phyllis Le Peau
7/21/2014 06:30:55 am
Loving you and praying for you...as well as feeling (and I know it is just a tiny comparison to your pain) your pain and agony.
7/22/2014 03:13:14 am
Oh, crying out to God for Leah and you guys. May God continue to show that he is still near, and he is for you - even in this crazy time.
Dorothy J Buecher
7/23/2014 09:06:06 am
Thank you for this update. If you go the antibiotic route, please remember to give Leah probionics!!! Precious little one!! Love, Mrs. B
Tom and Helen Fry
7/28/2014 10:20:10 am
Much love and prayers for the Nordquist family.
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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.