Severe Aplastic Anemia: Luci's Story

Monday, February 11, 2019 - 9:54am

When you’re a teenager, your whole life is in front of you. Luci Takas was a varsity swimmer, an avid skier and CrossFit athlete. Then something didn’t seem right.

“I wrote symptoms off to not getting enough sleep, lack of water or not eating enough, but I was eating, drinking and sleeping properly,” she says. At only 16 years old, Luci felt fatigued after simple things like walking up a flight of stairs. She started cramping up after walking just a block coming home from school. She began noticing bruises on her body, despite not recalling bumping into anything. “I ignored the signs because I was healthy. There was little reason to believe something would be wrong with me.”

When Luci’s health did not improve, she saw her pediatrician, who ordered blood work.  Not long afterward, Luci’s mother, Sarah, received a phone call from a nurse who instructed the family to head to Oishei Children’s Hospital immediately. Luci spent 36 hours in the Intensive Care Unit receiving blood and platelet transfusions in addition to undergoing a bone marrow biopsy to diagnose the issue. That’s when the Takas family met Barbara Bambach, MD, Department of Pediatrics at Roswell Park.

Luci was diagnosed with severe aplastic anemia, a rare blood disorder treated by Dr. Bambach and her Roswell Park team. Experts say only 500-1,000 cases are diagnosed in the U.S. each year. The disease occurs when the bone marrow fails to produce platelets as well as red and white blood cells.

Aplastic anemia is usually cured with a blood or marrow transplant involving a donor who is a sibling. Luci has a younger brother and sister, but Sarah and her husband, Justin, got bad news: their other children were not a match.

“I was devastated,” says Sarah. “It was crippling to hear Logan and Grace were not a match for Luci. They were both eager and proud at the prospect of saving her.” 

Help came instead from the Donor Center at Roswell Park, which was able to provide the necessary blood and platelets needed for her frequent transfusions.

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Enough Time to Enroll in a Clinical Trial

“Looking back, it is scary that I needed a transfusion every few days,” Luci says. “I was in survival mode. Every transfusion was a new chance at life.”

Around that time, the Donor Center began seeing two faces on a regular basis: Sarah Takas and her 83-year-old mother, Rosie. The gesture was not lost on Luci. “I thought it was so amazing that they both were giving back in a way that was so meaningful to me. Every transfusion is a gift of life.”

Roswell Park’s blood and platelet donors helped keep Luci alive for months until she was accepted into a clinical trial at the National Institutes of Health. After three weeks of treatment on a new therapy aimed at suppressing the body’s immune system, Luci was back under the watchful eye of Dr. Bambach.

Since Luci’s treatment, Sarah Takas has donated platelets about 20 times and doesn’t plan to stop any time soon. “I’d love to follow in my mom’s footsteps and still be donating three and a half decades from now.”

Luci has kept active since her diagnosis, becoming an advocate for both Roswell Park’s Donor Center and BeTheMatch.org, to help other patients with similar disorders. She has responded well to her experimental treatments and has not needed any recent transfusions. “I am forever indebted to the blood and platelet donors, my lifesavers from the Donor Center.”

In 2018 the Donor Center Team selected Luci to be their 2018 honoree for The Ride For Roswell. Having participated in the event when she was younger, Luci was able to gain a new perspective on the event. “There is power in numbers, and at The Ride For Roswell, you truly feel the strength and power created by so many people fighting against a common threat.” Luci will take part in the 2019 Ride as a virtual rider,* because she won’t be able to attend in person. But she has a good excuse: she’ll be crossing the stage at her high school graduation.

Luci plans to continue helping others and to become a pediatric nurse. “I am so thankful for the amazing care that I received. I am aware of the difference that a kind person can make in the midst of chaos. I am extremely excited to be able to give back to others and help others in the way my nurses helped me.”

*A virtual rider is someone who can’t ride on Ride Day but still chooses to raise funds for cancer research and patient-care programs. Virtual riders receive free registration and a personalized fundraising page and are eligible for fundraising rewards.

Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.