Finding Hope

To see Evan run around and play you would never know that anything is wrong with him. He's energetic, talkative and bright-eyed, loves to ride his bike and knows more about Pokémon than anyone I know. He's a sensitive and caring young man who loves to make people laugh and manages to spread joy wherever he goes.

Unfortunately, Evan's seizures are not improving and watching him have seizures can be a surreal experience. Every 10 days or so, our world is rocked by a seizure. After having tried lots of different medications, I'm sorry to say, they aren't working. There are other drugs but they probably won't work either. I'm not being pessimistic or feeling sorry for us, that's just where we are statistically: any medication he tries has a less than 1% chance of working.

Evan's last seizure was 9 days ago and knowing he is approaching a seizure, life becomes more worrisome, especially at night. We know that in the next few days we will be jolted awake by our son convulsing. He will settle into a slower pace as the seizure grips his body. We will administer a rescue medication to stop the seizure and we will watch him seize for several minutes more. Sometimes, if it isn't slowing down, we give a second dose and call 911. It's a strange routine to become accustomed too.

I am a perpetual optimist but even I have a hard time when the good side is that we didn't call 911 or that the seizure "only" lasted six minutes. It's hard to find comfort in knowing that there were 14 days between seizures instead of 9. The last few months my emotions have been raw and my spirits down. I have felt beaten down and have had a hard time finding a sense of hope.

On our most recent trip to the neurologist it was suggested that we consider a second brain surgery and an interesting conversation followed:

Me: "What sort of timeframe are we looking at?"

Dr.: "It depends on the Neuropsych evaluation. If he is showing a decline you should schedule it as soon as possible but if not, you've got time."

Me: "So, how much time? A year?"

Dr.: "Oh no! I wouldn't wait that long!"

Rob and I laughed about this conversation later remarking to each other, "that's not 'time'!"

We left the doctor's visit with a roughly sketched out plan to begin the process for a surgical evaluation, a few surgical options in mind and a small glimmer of hope.