Extreme headaches led to Lindsey’s diagnosis in October 2007. An endymoma was surgically removed and follow-up scans were clean until January 2010, when some growth was seen in two areas. Because this is an unusual tumor in adults, there was no specific protocol and not much history from which to gather data, so meetings with the oncologist and radiologist were not very helpful or hopeful.
VML’s Matt Anthony learned of her case and referred her to Dr. Mark Gilbert at MD Anderson. He knew Dr. Gilbert through Head for the Cure and knew that he specialized in and did research for adult ependymomas.
After several appointments with Dr. Gilbert, she entered a chemotherapy clinical trial that could last up to two years. She was monitored in Kansas City every two weeks. Every eight weeks she flew to Houston for a variety of scans and tests. During this time, after learning what the trial would entail, Lindsay’s boyfriend proposed so that they could go through the battle together. They were married in June.
Lindsey continued working full time as a marketing/category manager for Driscoll Berries. She also tried to continue with her active social, recreation, fitness and service life. But at the end of the first year of the clinical trial, she had to discontinue playing volleyball, running, working out, and taking classes. She shortened her hours at work and needed a couple of naps a day. She still taught her Sunday school class of 3-year-olds.
In March 2011, at the end of the first year of the clinical trial, the scans at MD Houston showed that the tumor had grown a bit. She was taken off of the chemo clinical trial and was referred to an oncology-radiologist. She completed her six-week, five-days-a-week radiation in late May 2011. Early in her radiation treatment, Lindsey started having panic attacks and was frightened by and claustrophobic because of the tight-fitting mask. Because she found little comfort listening to music on her iPod, her husband made a daily recording for her to listen to on a MP3 player. One day would be an inspirational story and another day would be a how-to lesson. He also made funny recordings for her. These calmed her because she looked forward to the daily recording. So sweet.
Lindsey lost her hair on the back of her head from ear to ear and from the neck up about five inches. The hair on top of her head hangs down long enough to cover the bald/smooth area. The first MRI taken five weeks after the completion of the radiation “looked better than expected” and the doctor is encouraged. She will have another MRI in late September that will show how successful this course of radiation actually was.
Throughout all of this, Lindsey is remarkably positive. She asks herself what she can learn from this experience and how she can help others. She looks forward to conquering this tumor so she can become a mother! Her husband will graduate from medical school in May 2012, and wherever they move for his residency, they want to help start a branch of HFTC.
Lindsey, along with other members of her family, have participated in HFTC since 2006 when her aunt, Janelle Tebbs recieved the Faith award, shortly before losing her battle with malignant melanoma that had spread to her brain.
Last year Lindsey’s office made hats and had an unofficial team. This year, she has an official team, “Team Louie 2.” “Louie” is the nickname for her left hand — she has fully developed arm to the wrist. When she seals letters, Lindsey traces her little left hand and writes “sealed with a Louie.”