Becoming Holy

We will run and not grow weary…Part One

on February 7, 2013

013I am weary.  I shouldn’t be.  It’s early morning, Joe is at his men’s bible study.  Jordan is at work.  The other kids are all still sleeping.  I have a cup of coffee with sugar-free caramel Torani syrup in it.  Life is good.  But, I am weary at the thought of the blog I am about to write.  Those of you who know us may suspect I am talking about our journey with Gabbie and her diagnosis with mitochondrial illness.  I ask myself why it is harder to write about this journey than it was to write about Jennifer’s life and the steps to healing.  Perhaps it is because Jennifer’s race is run.  She, like Paul, in 2 Timothy 4:7 can boast, “I have fought the good fight, I have finished the race, I have kept the faith.”  Gabbie’s race is more of a marathon, maybe even the Ironman Triathalon.  The kicker is~she didn’t sign up for it!  No chance to train for it, prepare for it, or decide if it was really a race she wanted to run. But she IS running and we are running with her.  Acts 20:24 encourages us~ “However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me–the task of testifying to the gospel of God’s grace.”  And grace abounds.

Just before we moved back to Tri-Cities in 2007, Gabbie’s left eye began to droop slightly.  We were told it was a lazy eye and that she might need strengthening exercises to help.  We were blessed to get back in with our family doctor~the amazing man who cared for Jennifer.  He detected a heart murmur in Gabbie and sent us to a pediatric cardiologist.  The cardiologist was gentle and caring and CONCERNED.  Gabbie had mitral valve prolapse, but his real concern was her eye.  He suspected a tumor or some type of Optic Nerve Palsy.  She was sent for evaluation to Spokane~just days before little Max was born.  They were able to rule out a tumor and one of the Optic Nerve issues, but wanted further evaluation with a neurologist.  Joe told them we would be going to Seattle to see our dear friend, Dr. Steven Glass.  He had carried us through Jennifer’s life, perhaps he would have insight in this situation as well.  

Twelve years had passed since we’d last spoken with Dr. Glass.  He was just as warm and wonderful as before, in a new, more peaceful office.  He evaluated Gabbie, ran blood tests, and realized it could be one of two things.  Myasthenia gravis was a possibility and could potentially be fixed with medicine.  The other, CPEO, was a sign of something far more serious.  He suggested I not “Google” it and get stressed out.  He said the only way to test for it is to take a muscle biopsy and that it would have to be done in a very controlled environment.  The best route would be to send her for an eye exam, treat for the myasthenia gravis and hope that her eyelid opened up.  We began treatment, but not until I had googled CPEO.  

I cannot adequately describe my experience with Google and each article I pulled up on CPEO.  With each word, my heart accelerated, my breath quickened and then stopped, my eyes raced across the words in the article~ “short in stature, mitral valve issues, drooping eyelids, depleted appetite, low energy, prone to illness.”  There was an explanation of the word CPEO~Chronic, Progressive, External, Opthalmoplegia and some specific illnesses that cause it.  Every fiber in my being was shouting~”THIS IS IT!  Oh, dear Jesus, NO!”  The outcomes of the specific illnesses weren’t good.  At all.  And you know how they talk about “mother’s instinct?”  That wasn’t good at all either.

So, it’s still 2007, we have five kids, one~a brand new baby boy.  We just built and moved into our house.  We pushed our fears to the side and hoped against hope that Gabbie had Myasthenia Gravis.  She was on the medicine for a year and it sometimes seemed to be working.  Dr. Glass was frustrated and sent her to a new eye doctor in 2008.  He looked like Jack Black and had a crazy-fun personality.  During pre-exam he mentioned how happy he was that the reports showed no “salt and pepper” speckling in Gabbie’s eyes.  He told us that would “NOT be good and that we sure didn’t want the disease that it would indicate.”  Then he did the exam and the whole joyful, boisterous, Jack Black mood in the room changed.  Drop the Jack.  Think BLACK.  He was so somber.  He went to the reports he’d been sent.  Apparently the prior specialist had NOT done the “salt and pepper” test.  Gabbie had it~the salt AND the pepper.  That was the pivotal moment.  I’m sure that Jack Black wanted to put his foot~possibly his entire body~into his mouth for his “off-the-cuff” remarks about us not wanting salt and pepper speckling.  I felt physically sick.  Every article on CPEO I had read was flipping through my mind at a crazy speed.  Jack Black’s lips were moving but I really couldn’t hear the words.  Blah blah blah, appointment….muscle biopsy…so sorry…so sorry.  Me too, Jack.

Now we are meeting with a new doctor at Children’s Hospital in Seattle, Dr. Russell Saneto.  He’s a mitochondrial specialist~extremely smart and into research.  We get an explanation of what is going on with Gabbie.  She appears to have what he calls, Kearns-Sayre Syndrome, KSS for short.  It is everything I read about online.  To explain it simply, the cells of the body need energy.  The energy makers inside each cell are called mitochondria.  Mitochondria have their own DNA, different from the DNA in the nucleus.  In Gabbie’s case, her mitochondrial DNA is, for lack of a better term, deleting itself.  As it deletes itself, there are fewer “energy makers” and systemically, she weakens.  The reason her eye began to droop is because there are more muscles in the eye than anywhere else in the body.  This is the first place to express the weakness.  The next location~the heart~all muscle!  People with KSS need, at some point, to have a pacemaker placed.  The heart conductors will stop firing and need help.  Without a pacer, there is a 30 year life expectancy.  Gulp.  She is thirteen years old.  Are you KIDDING me?  We are started on a mitochondrial cocktail.  That’s what they call it.  But, it isn’t a drink and it doesn’t relax you.  It’s a crazy combo of vitamins and medicines that Gabbie takes twice a day to help give her maximum energy and remove byproducts from her cells.  She cannot have Tylenol and a host of others medicines.  We are informed that if she were to have surgery, without special anesthesia, she will die on the table.  Nice. They will continue to monitor her progress and work with the doctors from Children’s in Spokane for her heart.

March 2009.  Routine heart exam, Echo, EKG.  Our doctor comes into the room and she seems off.  She clears her throat and says, “I’d like to place a pacemaker in Gabbie. Her conductors are not working.”  We ask, “When?”  She answers, “Tomorrow if possible.”  “No can do,” we respond.  “She has to have surgery at Children’s in Seattle. There are serious anesthesia issues.”  She is on the phone with Children’s Hospital Seattle.  It was a Thursday.  Dr. Saneto told us it took a string of over 200 emails to coordinate the surgery in Seattle the following Wednesday.  The next five nights at home, we tucked Gabbie in each night and prayed we would see her in the morning.  Thank you, Jesus, for answering our prayer.

In those crazy five days, I had to make the decision to stop breast-feeding Max.  He wasn’t allowed to come along.  No matter how we looked at it, it was an impossible situation.  These days were both physically and emotionally painful. We coordinated with friends and family to have care for the youngest three.  Jordan would be with them at night after she returned from college.  We prayed and were prayed for by so many people.  On April 15, we met with the anesthesia team~the lead anesthesia researcher at Children’s was there~he had found the proper mix and process for these precious children.  He had tears in his eyes and told us that once he worked with our children, they became his kids too.  We kissed Gabbie goodbye, hoping and praying that we would see her again.  Enough for now…I can’t see the screen through my tears.  

 

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10 responses to “We will run and not grow weary…Part One

  1. Sandra Riggers says:

    Charlene,
    Thank you for chronicling your journey. God’s grace carries you forward, but nothing in life can prepare you for things such as this. I look forward to reading more. Sandy

  2. Tiffany Thorson says:

    The tears of pain flow down my face as well for you as a mother, for Joe as a father, all of her siblings….but most of all for Gabbie. In my work, what you just did is amazingly healing and will help (for a multitude of reasons) tremendously the more that you are able to do it. Exposure treatment is common and it helps the brain to detach the sensory details (stimuli) that were there through the journey to the emotional fear response system, thus resulting in a lowered emotional response…which will help with future coping. The Thorson prayers will continue for Gabbie.

  3. Irene says:

    Thank you for sharing and helping us to see the strength God has given you and your family. I am so blessed to know you and your beatuiful family. God bless you and many prayer for all of you,

  4. Julie Schumacher says:

    Alls I can say is you guys are all so amazing!!! Never knew all these details…sorry…and just know I will be praying extra hard for you guys during this Lenten season!

  5. Judy Urrutia says:

    We also didn’t know the details. You have been through so much. God must trust you a lot! He loves you all too! Continued prayers. Mac and Judy-Carla too!

    • charstar87 says:

      Judy, Mac and Carla~Thank you for your sweet words and constant prayer! Our dear sweet nurse~who cared for Jennifer in the NICU and gave us hope by sharing your family’s story! We clung to your story when we were afraid! All God’s blessings on you! Love~Charlene

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