We were waiting out his days, waiting for the seizure that would take his life. That had become the devastating truth for our family. Waiting without hope.
We had exhausted all “valid” medical treatments for our son Caden — numerous combinations of pharmaceuticals that would provide mild, temporary relief of hourly seizures. But there were the consequences of those powerful medications to manage: Near constant fatigue, nausea, kidney stones, liver damage, constipation, dizziness, rashes; one medication slowly diminished his ability to walk.
Caden, 11, also had two radical brain surgical procedures, one severing the two hemispheres of his brain in hopes to limit the amount of seizures, and another called a lobectomy (the new, less stigmatized word for lobotomy). The right frontal lobe of his brain was removed in hopes of drastically lowering his daily seizures. Caden suffered a post-operative stroke shortly after. The seizures, though lessened, continued to number hundreds a day. We also tried two extreme medical diets that mimic starvation in hopes to lessen the hourly impact of continual seizures.
Caden has Lennox Gastaut Syndrome, a rare and often debilitating form of childhood-onset epilepsy. We have truly enjoyed the “gold standard” of neurological care. We just ran the full course of treatment and had to look outside convention. We are pro-science people. So we began researching medical marijuana.
When my wife first came to me with the idea of using medical marijuana for our child, my first thought was, “not happening.” Then she showed me the stories of Charlotte Figi and Zaki Jackson, two children in Colorado whose seizures have been brought under control through the use of medical marijuana. We were both surprised by the amount of research that has been done with this plant. We were very surprised to learn that while the federal government classifies cannabis as a Schedule 1 controlled substance “with no medical benefit,” it also holds a patent for its medical use.
I started to compare cannabis to the FDA-approved drugs/treatments we’d given Caden and, considering the new lives children like Charlotte Figi and Zaki Jackson are living, our decision was made. We would split up our family. My wife and young boys would move 1,500 miles away to Colorado, to seek the hope that we just didn’t have before.
My wife and I used to say, “Hope is a dangerous thing for parents like us.” In Colorado, with the help of friends at The Realm of Caring foundation, we found just that.
After starting Charlotte’s Web, a strain of medical marijuana, in March, Caden has had upwards of an 85 percent seizures-reduction rate. Imagine what that means for a child who could seize hundreds of times a day? Shortly after starting treatment in April, our son had the very first seizure-free day of his life! That lasted for six days. He is truly learning a new way of life.
However, with one year of separation quickly approaching, my sons are growing up away from me. Our family has made tremendous sacrifices and adjustments to seek this life-changing treatment for our son. Should hope depend on your zip code? Should families in America be forced to relocate, separate and stay away to access this treatment?
What Caden is using for seizure control is classified as therapeutic hemp, with less than .03 percent of THC (the psychoactive ingredient in marijuana). The real truth is that Caden has been “high” his whole life on pharmaceuticals. Now, he is actually lowering those meds and controlling his seizures sober for the first time in his life. He is healing, slowly.
We don’t know how this will end for us as a family. We thought for sure, with all of the legislative support in Georgia last year, that our family would be home by now. Sadly, we just sold our house here to continue to finance this treatment in Colorado. This is one of the many consequences of the “medical refugee” life we have to live in order to heal our child.
Chris Clark is a sergeant with the Atlanta Police Department.