Wednesday, August 17, 2011

Living With Severe Chronic Neutropenia and Overcoming Mommy Worry!

I wrote earlier in the year about our daughter Katie.  She was diagnosed with Severe Chronic Neutropenia.  We discovered it in December. ( For more about that, you can look at my January 1, 2011 post.  I gave the details about our experience there. )

I wanted to write a bit about this journey for others who are struggling with ongoing health issues.  It's scary as a mother to watch your child for every little sniffle.  Does she have a fever?  Will she develop Leukemia?  Did I hurt her when I gave her the shot tonight?  I bruised her leg...again.  We didn't have to hold her as tight tonight.  I heard her coughing.  Will she wake up in the morning?  She's sleeping too long.  She's not sleeping long enough....The list goes on.

Part of the list is normal...part of it is the attack of my uncontrolled thoughts.  As I continued to put on a happy face and live life, these thoughts assaulted my mind day and night.  Mostly night.  Often I didn't even realize I was worrying.  There had just been so many talks of Leukemia and all that goes with it.  I would see all the little ones at the Oncology office.  They were in my heart.  I was praying for many of them.  I met their mothers and felt compelled to pray for them.

By March, I had evidently crossed over the line from concern, worry to all the symptoms of Post Traumatic Stress Syndrome.  I didn't even see it coming.  One night I sat up with my heart racing, sweat pouring off my body and thinking...well this is it.  I'm going to die.  I finally went to the ER about 6:30am.

I was not having a heart attack.  I was having a panic attack.  Me.  The girl who rarely worries.  I'm fairly strong.  I believe God is a healer.  I know He loves me.  Why was I panicking?  They asked me if I had any abnormal stress in my life....uhh yeah. I guess I do.

They sent me home with Zannac.  It worked like a charm.  I knew from the beginning, that I probably shouldn't get to comfortable with this medication.  By the end of June, I had taken all ten tablets.  Then I thought...hmmm how am I going to get some more?  That's not a good thought!

I decided to mention it to our pediatrician.  She told me upfront to NEVER take another.  She said  you need to identify what's happening.  You need to address the panic attack for what it is.  It's uncomfortable.  You will not die.  You need to think on things that are good and choose to relax.

She added that she had seen perfectly good parents become complete addicts and literally have to be placed in a mental institution due to the side affects of the drug.  I did not want that.  (By the way, this is for me.  There may be instances where you may have a prescribed medication and need it.  Please take what your Dr. prescribes you unless you feel the leading of the Holy Spirit to do otherwise!  There are instances where medication is very necessary!)

Driving home I felt the Lord confirm what she told me.  I felt that I was to acknowledge what was going on in my life.  I was to speak to the symptoms for what they were.  I then began to just sing peaceful scriptural songs in my mind.  It was amazing!  It worked!

I began to not fear going to bed.  I began getting real rest.  The heart racing still comes on occasion, but I don't sit up all night worrying I'm going to die!  I have peace.  The peace that only God can give!  Truly God does give sleep to those He loves!

Katie is still considered severely neutropenic. her numbers are considered extremely low.   Clinically she stumps them.  She is doing great.  She has had very few illnesses since last winter.  God is a good and faithful God.  I continue to press on in the things of God, knowing that He holds  us in His hand.  He loves us and He has good for us!  He has good for Katie!

I pray that if you are struggling with things in  your life, that you would be comforted by the power of the Holy Spirit.  Please know that real peace comes from Him.  If I can pray for you, please let me know.  If you know anyone with this disorder, please let me know.  I would love to meet others who are struggling with this rare disorder. 

Hilltop Blessings,


  1. Oh Sheri, I hear you all too well. I feel like this could be me writing this! Right around the time the leukemia word was being seriously tossed around with Ellie, I got horribly sick with super high heart rate (even when I was sleeping) and a bunch of other symptoms and was hospitalized. I couldn't even be there for Ellie's bone marrow test because I was in the hospital with my own problems. They started thinking I had leukemia, too! To this day, the doctors don't know what was wrong with me, but I seriously think stress about Elianna played a major part.

    I completely understand the worry part of this whole neutropenia thing. I still struggle a lot at times, especially with worrying about Ellie developing leukemia since her bone marrow test showed an abnormally high number of blast cells (usually indicative of leukemia). Will keep praying for you all. P.S. I have been meaning to reply to your email - I will soon!

  2. This was a good and needed post! My youngest sister's son was hit by a car five years ago, and we lost him. My sister is a drug addict today because of it. She doesn't know the Lord...

  3. I do love that God is working such miracles in her life that it stumps the doctors. You do everthing that you can for her in a wonderful way. God is holding her life and He is holding you beside her. I think we should find some stones and make an Ebenezer with a stone for each illness He has already fixed since the day she was born. We could decorate it cute somehow but you could walk by it daily to count His miracles. Just like the Israelites.