Sunday, September 18, 2011

The journey continues...

June 2010, we were at a family reunion at Island Park, Idaho just outside of Yellowstone National Park.  I got up early one morning to go for a bike ride and scout for wildlife.  I found this road that seemed to go on for miles.  It was untraveled at this time of the morning.  I didn't see one other person.  The scenery was beautiful.  The road was narrow and not very well maintained.  The road had many turns and hills.  Despite the difficulty of the road, I couldn't help notice where this road seemed to lead--The Grand Tetons elevation 13,770 feet.  I stopped for this photograph.  It seemed to represent many things that were going on in my life at the time.  It has more meaning today. 

Life has been very difficult for me and my family.  Living each day with two chronically ill children with special needs is challenging.  I live each day not knowing what will happen to Seth and Sydney.  I live in a state of fear.  Will today be the day that they start to decompensate?  How long do my children have to live?

It is difficult to not think this way when you know the course of Complex I Mitochondrial Disease.  They have Leigh-like syndrome.  As difficult as it is, I try to live each day for what it is.  I try to live in the moment, I try to take one day at a time.  I try to enjoy the journey and notice the beauty around me.  I try to spend time with my children and teach them important life principles.  I try to teach them of God and his love.  I try to teach them of faith and that this life has purpose.  I try to teach them that life is a journey that is not always easy--especially for our family.  I try to teach them that our destination in this life if not for riches or prestige, but to develop a relationship with God--our Heavenly Father, that we are here to bear one anther's burdens and love our fellowmen and women.  That at the end of this difficult journey is a majestic beautiful place.

We had a piece of good news with Seth.  He had anther MRI on Friday.  His lesions in his frontal lobe have decreased from 14mm to 11mm.  His lesions in the other parts of his brain are stable and he has no new lesions.  When my friend Dr. Berges took me back to the radiology reading room and showed me this, I wept.  I couldn't believe it.  My children and my wife were right with their feelings they had that things were going to be OK.  This was a lesson for their father that I need to replace my fear with faith.  Not that he will be completely healed, but that things are going to be OK.  I don't know what God's will is for Seth.  I do know that he is a very special boy that seems to be filled with the love of God.  He touches so many people with his smile and his love.  So for today, I will enjoy each moment.  I will take the time to appreciate the simple beautiful things that are along this journey.

Thursday, September 15, 2011

This insidious disease

It's been awhile since I've written about my children.  We had a great summer together that was pretty uneventful as far as their disease goes.  Seth is speaking more and falling about the same.  Sydney had a tonsilectomy for her obstructive tonsillitis and had some complications.  Her glucose spiked to 340 and she started bleeding 8 days after her surgery and had to go in for emergency surgery.

Mitochondrial disease is a multi-system disease.  It can effect every organ system in the body.  It is possible that Sydney will develop diabetes.  I hope not.  Sydney called from school today stating she wasn't feeling well.  I told her to go to the nurses office.  I called the nurse and told them to check her pulse and blood pressure.  Her resting heart rate was 145!  I had her come to my office and did an ECG which showed some changes from her ECG 3 weeks ago.  I faxed her ECG to her pediatric cardiologist and he thought her arrythmia was coming from her atrium and not her ventricles.  That was reassuring.

It never stops!  I am on edge thinking when will the next problem happen.  I have been so stressed lately and living in complete fear.

Seth goes in tomorrow for another MRI under general anesthesia.  Each MRI has showed progression of the mitochondrial disease to other regions in his brain and enlargement of the existing lesions.  I am scared.  I love Seth and it has been difficult to watch this process.  The other night, our family sat down to talk about Seth's MRI and I asked how each of my kids were feeling.  They all seemed to be ok.  They were a little scared, but the overwhelming feelings they expressed were that he would be ok.  I don't share the same feelings.  Maybe it's because I'm in medicine and I know how this disease progresses.  Maybe it's because I have no faith and I live in fear.