For a long time, Megan Finnie’s seizure attacks had been interspersed with what appeared to be a parade of life milestones: her first dates, day-to-day interactions with friends and family. Her seizures emerged unexpectedly, though, and Megan’s seizures took more time, more effort, and more risk than those around her.
In the fall of 2013, we took Megan for a bone marrow test and found out that she has a B-cell acute lymphoblastic leukemia (ALL). Our first call was to the neurologist, who said, “I think you have epilepsy.”
After Megan received her leukemia treatment and was then put on oral steroids and pills to treat seizures, the days that followed seemed to go much slower. There were no crazy seizures or screaming, like we had before. Some days she just seemed okay. But not all days were that pleasant.
One afternoon, Megan was playing with her brother’s Barbie bike on the kitchen floor and twisting her head up and down. After a five-minute period where her head didn’t move, the little blond bundle of energy came barreling back to life and reversed its rotation. Three shakes, one split-second. Minutes later, an instant. For Megan, that’s life.
According to the Epilepsy Foundation, epilepsy affects one in 45,000 children. In Megan’s case, she had been diagnosed with the pediatric version of the disease, which affects people in their childhood and teenage years. In adulthood, the disease is often due to birth-related factors like cerebral palsy or epilepsy of a heart and/or internal organs.
For years after her diagnosis, Megan continued to have seizures, but they took a long time to manifest. They affected Megan’s body, but they did not affect her personality. Other children, however, could not keep up with that kind of resilience. So after surgery to remove her left kidney, Megan developed heart arrhythmia that lasted a month.
When Megan told us that, after a few more seizures, she was thinking about changing her diet, we accepted her move, even though our gut feeling was that it was likely another form of epilepsy.
Because Megan was already eating so poorly, they decided to try a low-carbohydrate diet, something I learned had been proven to work for epilepsy patients. We started with dry beans and meat, then added a variety of nuts and seeds. We watched what we drank and stocked up on healthy snacks.
After her first month, we had a few more slips up. Megan was “really tired.” It happened after we ate a snack, or she wasn’t doing well with her sleep. But then we slowly succeeded. Megan regained much of her weight and began to lose some of her seizures.
Unlike with concussion headaches, we knew that Megan’s brain was now clear of the protein buildup that came from the tumors lining her brain, the lumbar tumors. And we knew that Megan’s seizures were a symptom, not a cause, of her illness.
But with every seizure, and every relapse, Megan’s maternal instincts kicked in, and she held us up, sharing with us the love and grace that helped her fight her illness. She read “little words” she learned in the hospital to her great-grandmother, Cade Finnie, whose own life was turned upside down by cancer. “It’s a girl!” Megan said to Cade on the phone after her first day of chemo, ecstatic that she was going to be a mommy.
While we accepted that Megan didn’t have many months left, we were grateful that we could give her some grace that would benefit her epilepsy and give her the best possible quality of life after cancer.
Now that Megan has completed her run of chemo treatments, she’s available for other families in similar situations. According to the American Academy of Neurology, “It is easy to be despondent with the changes in our lives, as all too often we hear about those who have become so sick and so short-lived that they won’t even have the chance to get rid of the memory.”
Megan, though, is a teacher. She continues to lead cancer survivor support groups for women, and she’s leading a group for women with epilepsy. She was just named CEO of the March of Dimes at a breast cancer event for young mothers. Her passion is big, and for Megan, it’s contagious.
*Names have been changed.