When our daughter, Cameron, was diagnosed with tuberous sclerosis (TS) in 2001, 34 weeks into my pregnancy, my husband and I felt like we were in free fall. Doug and I had never heard of TS, and after meeting with a geneticist and learning all we could before Cameron’s arrival, we were scared. We knew our family’s life was about to change forever.
TS is a rare, genetic condition that causes noncancerous tumors to grow in the brain and other vital organs, including the skin. Depending on where the tumors are, TS can cause problems with blood flow in the brain, kidney function, behavior, learning and vision. Many people with TS live with seizures, along with other neurological issues.
Cameron developed normally at first, even though she had a slow-growing tumor in her brain. But at around 14 months, she started having seizures. Medication helped control them, but at about age two, the tumor started growing like crazy. In just a few months, it filled up almost half of her cranial cavity, and was wrapped around all sorts of vital structures.
Everyone Said "Dr. Franz"
A pediatric neurosurgeon in Seattle recommended surgery to remove the tumor, but the risks were really scary. I started sending Cameron’s brain scans to pediatric neurologists all over the country, and two of the most prominent specialists said we should take her to Dr. David Franz at Cincinnati Children’s. Dr. Franz had been caring for kids with TS for 20 years, and he was doing a research study with a groundbreaking drug called rapamycin.
I am sure I was petrified at the time, but what I remember about our first appointment with Dr. Franz is a feeling that everything was going to be OK. Nobody at the TS Clinic was panicking—they were perfectly calm and reassuring. Doug and I realized that no matter what challenges were ahead, Dr. Franz and his nurses were going to face them with us.
Dr. Franz prescribed rapamycin, and within three months Cameron’s tumor shrunk significantly. After a few years, she switched to everolimus, a “new and improved” version of rapamycin that has been shown to reverse the genetic defect associated with TS. Today Cameron doesn’t have any growths on her organs, including her skin, or any of the behavioral problems that are sometimes associated with TS. The tumor in her brain is so small that removing it isn’t even something we consider anymore. Still, TS is part of our life—the disease affects Cameron’s ability to learn, her hormones, emotions, even her eyesight.
Cameron and I travel 2,000 miles to Cincinnati Children’s each year for a check up with Dr. Franz. The care team just has so much experience with TS. They’ve seen it all, in patients who are young and old, in kids who are mildly affected, and in those with severe symptoms. Most importantly, they know Cameron, and they love her. They have wrapped their arms around us like we are part of their family. I even have Dr. Franz’s cell phone number, just in case there is ever an emergency.
My Amazing Daughter
As Cameron starts transitioning into early adulthood, Doug and I just want her to be a happy and active member of whatever community she is in. Right now she is part of a fantastic inclusion program at our local high school, and is doing great. She can read and do functional math; she plays on a school basketball team, dances, and loves riding horses, doing yoga, and hiking and skiing in the mountains. Cameron has such an endearing and engaging personality, and she adds a lot to the lives of all who know her. She has introduced our family to a beautiful world of people and experiences that we never knew existed.
Sometimes Doug and I still talk about that enormous tumor, and how things really could have turned out differently. Cameron has achieved way more than we ever imagined she could physically, academically and socially. She continues to amaze and inspire us every day.
About the Author
Kay Rawlings lives in Seattle. She and Doug have two kids—Wilson, who is in college, and Cameron.