Mar 10, 2021 Latest post:
Mar 25, 2021
Dear Family and Friends,
Tomorrow, March 10, Erin will be admitted to Duke Univsersity Medical Center (DUMC) to have the first of two brain surgeries. Our hope and prayer is to cure (or end) the seizures Erin has been experiencing over the last 10 years as well as reduce or eliminate the need for such large doses of anti-seizure medication. Erin's seizures are currently caused by one tumor in the right temporal lobe of her brain associated with Tuberous Sclerosis (TSC), a progressive genetic disease. TSC causes benign tumors (aka tubors) to grow in all organs of the body along with a number of other serious health complications.
This isn't Erin's first brain surgery. We learned of Erin's TSC diagnoses on April 16, 2010 when Erin had a seizure during gym class at Wake Forest Middle School at age 13. We were stunned when the paramedic attending to Erin called to ask us how long she had been dealing with seizures. "Never!" We met the ambulance at the hospital where they did some routine CT scans before sending us home and that's when our world changed. Erin had several tumors in the ventrical area of her brain blocking the flow of fluid between the left and right brain. Erin's situation was acute and required immediate brain surgery. Our family's journey through that unplanned surgery and healing process still haunts us, but we know we are lucky to have Erin alive and with us.
Eleven years later we are still learning about TSC. We thought the worst part was over back in 2010. With the tumors resected, we thought Erin would be able to move on with her life and put most of the TSC concerns behind her. Unfortunately, we were wrong. For some people, puberty can trigger progression of TSC and new symptoms can arise - as was the case for Erin. Erin has since dealt with epilepsy and a number of other serious health conditions. The epileptic seizures have been worsening and it is time to do something to help Erin gain a better quality of life and secure safety. Thus, we are entrusting the doctors at Duke to do their best to remove a tumor. Tomorrow they will surgically insert depth probes into Erin's brain and then have her monitored in the epilepsy monitoring unit (EMU) at Duke where they will induce seizures and collect data over the next week. If all goes according to plan and if the data shows what the doctors expect, they will then resect the tumor on (or around ) March 18.
We know many of you are familiar with Erin's challenge and our family's journey through the medical system, but many are not and so we thank you for reading about how we arrived to this place and event. It will be much easier for us to update everyone with one message on Caring Bridge and when Erin is better, she will love reading the messages of love, faith, prayers, and hope from all of our family and friends. The first surgery is tomorrow, Wednesday, March 10 at 10:45 AM (a little later than first planned). We will keep you all posted.