Setting the Stage

As many people know, I used to write a blog for a little over a year. Over time, priorities became a little different and writing a blog just wasn't as important as it used to be. I have thought about starting it up again many times over the years, but have finally decided to pull the trigger. In the end, you might just be experiencing a bit of a therapy session for me. Thank you for coming along this journey with me.

I have several friends that I have known from childhood, and many new friends I have picked up along the way over the past 10+ years. I thought I would use this first post to give everyone a bit of an overview of our family story. That might give everyone a bit of insight into what goes on in my life most days and who all the players are.

My wife Kelly and I met in college in 1994 and eventually married in 2001. We have two daughters that are a highlight of my existence. Elise is 14 and Abby is 12. In November of 2009, our healthy, happy, talkative and sassy daughter Elise was diagnosed with Acute Myeloid Leukemia (AML). Elise was three years old at the time and Abby had just turned one. Elise's AML diagnosis was just the beginning of what will be a lifelong journey of health struggles for her. The diagnosis, and all that has come with it over the years, changed the trajectory of my family's life forever. Thankfully, Elise has been in remission for more than 10 years and is no more likely than you or I to ever have cancer in her life again. Unfortunately, cancer treatment left behind a wake of struggles for her.

During cancer treatment, Elise contracted the Human Herpes Virus #6 (HHV6) on her brain. Almost instantly she lost all of her "normal" functions and reverted to an infant. She could no longer eat on her own, go to the bathroom, talk, etc. With many stops and starts over the years, she has never managed to regain many of those skills over time. With the way the MRI of her brain looks, doctors tell us that she actually functions far better than they would suspect. She has extensive damage in her brain from the HHV6 infection. When she was younger, there was always hope that her brain would rewire itself and form new pathways. Each year, more and more of that hope fades and is replaced by a need to learn how to function as she is. 

Post treatment Elise was undergoing extensive outpatient therapy to regain skills lost and was making tremendous progress. Then, out of the blue, she developed a seizure disorder. The types of seizures have changed a bit over the years, but not much else. After diet changes and numerous medicine combinations, we have never been able to get the seizure disorder under control. A couple of years ago, Elise was diagnosed with Lennox Gastaut Syndrome, which is a complex, rare and severe form of epilepsy. Until these past couple of weeks, her seizure disorder has been better under control in the past couple of years than most of the 8 or so years prior. But, with adolescence has come significant struggles to keep her seizures under some semblance of control. On a "good" day Elise will have 1-10 seizures. They are generally short, lasting 3-5 seconds, and are spaced out throughout the day. On a "bad" day, Elise will have upwards of 100 seizures or more. Often times those come in clusters every few minutes or for prolonged periods during an hour. As an example, today she has not had a one hour stretch with less than 5 seizures. So far today, her worst hour has been 10 seizures within that hour. Fortunately, she is already at the hospital and can get some high-powered medication that should make a pretty big impact quickly.

Not only has Elise's life been impacted by all of this, but so has the life of Kelly, Abby and myself. Nobody signed up for this. Over the years we learned to cope with it. So many people tell us, "you make it look so easy." While I am flattered, don't kid yourself. Nothing about this is easy. Under that smile and easy-going demeanor is exhaustion, worry, insecurity, and so much concern for what the future holds. As a family we put all of our efforts into providing Elise with the best life possible. While that can often be exhausting, we have met some of the most amazing people and had some of the most awesome experiences on the way. Sometimes even struggling has benefits.

Kelly recently sent the meme below to me privately. I thought it was too good to keep just between us. We know several families that have similar struggles to ours. While they aren't always glamorous, we'll embrace our unhealthy coping mechanisms.