Saturday, October 16, 2010

by Mark Beckwith

I confess, I am spoiling my daughter rotten with even less restraint than usual.  This thing with brain surgery has me more nervous about her future well-being than I have been in a long time.

The neurocutaneous melanocytosis (NCM) in Megan’s right temporal lobe has caused her to have seizures.  NCM is the technical term for pigment deposits in the central nervous system (brain or spinal cord).  Although we learned she had both: seizures, and NCM in her temporal lobe, in 1996, we had not been able to confirm that the seizures were coming from the NCM with sufficient confidence to pursue therapy, until last month.

A Hat Tip is in order to Le Bonheur Children’s Hospital in Memphis.

The good news is brain surgery to remove part of a temporal lobe is, as brain surgeries go, one of the more "easy", as if brain surgery is ever "easy", and one of the more common procedures.

There’s Something About Megan

Her temporal lobe appears to be so affected by the seizures that it quit functioning a long time ago.  She lost brain function there.  How much, if any, of it has rerouted to other parts of her brain will be our next fact-finding mission.  After we know the metrics, we then will work to facilitate as much re-routing, intentionally, then (re)teaching, as we can possibly do.

On the plus side, when a person with temporal lobe seizures like Megan’s undergoes this procedure, the success rate is very good – the seizures are usually over, permanently.

Keeping On

After she was born, her symptomatic NCM diagnosis hit me like a kick to the head while I was down already from the kick to the stomach from the giant nevus (LCMN).  Since that diagnosis, we have always lived under its shadow, taking refuge in how bad the data was about NCM, and making it our job to improve that situation, not just for us but for everyone affected by it. Recognizing, for instance, the plain truth that although some people who have symptomatic NCM die from it, there are also some who do not die from it, perhaps some so healthy they are not even on the radar.  Once recognized, the search for truth is on, with the tenacity of moms whose babies are in the balance.

On the way-plus side, for the last 14 years, my family has continually surfed a wave of support from more people than we would ever have thought would care so much for us.  This support – physical, psychological, prayerful - has enabled us to pursue great lives and worthwhile goals.

Thank you.  Nevus Outreach is a worthwhile pursuit.  In the face of these intricate challenges, we will keep on “keeping on.”