Tayler Ellison has 2,658 reminders of her courage. On Fridays, they hang on an IV pole that delivers chemotherapy, but that’s not where she plans to keep them. She wants them in a custom-made display case next to her future medical school diploma. 

The Beads of Courage program helps patients record and tell their stories through the use of colorful beads that acknowledge each step of their treatment journey — a red bead for every blood transfusion, a white bead for every dose of chemotherapy, a black bead for every needle poke. The program serves about 60,000 children in more than 240 children's hospitals in 14 countries. 

Tayler’s journey began in 2008 with a brain tumor at age 4 in Colorado. Surgery, chemotherapy and radiation overpowered the despicable disease. She was in full remission and has little memory of the cancer battle beyond the 600 colorful beads her mom and dad saved for her. 

But in 2018, no longer shielded by the innocence of youth, Tayler’s courage would again be tested. At age 14, she was diagnosed with osteosarcoma, a bone cancer in her right jaw. This time she remembers everything — the chemo, the complex surgeries needed to rebuild her jaw with bone taken from her fibula, the titanium pins, the tracheotomy. Another 1,100 beads were added to her collection, a small token of the fearlessness and battle she can summon to a fight. Like an indestructible force of nature, Tayler’s courage prevails.     

“Her quiet grace and sweet disposition are inspiring to me and to all who meet her,” says Jennifer Mayer, M.D., a hematologist-oncologist at Johns Hopkins All Children’s Cancer & Blood Disorders Institute who sees Tayler in St. Petersburg, Florida, during her hospital visits for chemotherapy. The admiration shows on the doctor’s face even before she enters Tayler’s room.  

“Tayler is a remarkable individual. She is beautiful and kind and also incredibly strong, able to confront difficult cancer treatments with a confidence and maturity well beyond her years,” adds Mayer.

After her relapse six years ago in Colorado, Tayler’s family learned she was genetically predisposed to cancer. “Li-Fraumeni syndrome is a rare inherited, usually familial, condition caused by the mutation of a gene called TP53. The presence of this gene mutation causes a predisposition to the development of cancer, sometimes multiple cancers,” says Nanette Grana, M.D., an expert in genetic predisposition. “Children with Li-Fraumeni syndrome are at high risk of developing, like Tayler, brain tumors and osteosarcoma, as well as other types of cancers. Although there is no cure for Li-Fraumeni syndrome, there are lifestyle changes and preventive cancer screening guidelines. The goal is to prevent some cancers and to detect some at a low stage, improving these patients’ quality of life and survival.” 

For Tayler, the gene disorder is termed mosaic Li-Fraumeni, indicating the mutation is present in some, but not all, cells. “This usually happens in de novo mutations, meaning she did not inherit it. Her gene mutated in útero,” adds Grana.

Genetics may be responsible for her cancer, but there’s another kind of DNA responsible for Tayler’s bravery and ability to inspire others. It’s undetectable by even the most powerful microscopes. It can only be confirmed by meeting her. 

Now 19, and fighting cancer for a third time, Tayler says, “Everyone has the right to be angry, but I look at the brighter picture. I’m going to get through this and look at good outcomes. It’s important not to get discouraged. To stay optimistic. We hurt ourselves more if we don’t stay optimistic.”

When not admitted to the hospital or studying at the University of South Florida, her treatment is overseen by Jonathan Metts, M.D., in the hospital’s outpatient clinic. “Osteosarcoma requires intensive treatment with surgery and chemotherapy to maximize the potential for cure. And for some chemotherapies, there are limits in the amount a patient can receive in their lifetime. This complicates the care of cancer in patients with Li-Fraumeni syndrome, who often need chemotherapy over and over again throughout their life. We adjust Tayler’s treatment plan accordingly around these limitations,” Metts says. “She’s a remarkable young lady who takes great care in understanding her cancer care and treatment options, and her attitude and perspective on her cancer journey has been inspirational to our whole team.”

Together with her parents, Shane and Alena, and younger brothers, Tristen and Troy, the family is united in Tayler’s care. “This is a second home for us,” says her dad, Shane. “We’re loaded down when we move in and out. The people at All Children’s have really lessened our stress. We’ve never had care coordinators before and ours have had a significant impact on our lives,” he adds. 

“Tayler’s beads represent far more than what each color symbolizes. They are a reminder of how strong these kids are, and how proud we are of the things patients endure,” says Lindsay Jones, R.N., a clinical supervisor and Beads of Courage ambassador. When we deliver the beads to the patients and families, you can see in their eyes how meaningful they are. Some patients have made bracelets out of their beads, and others have given them as tokens of thanks after a long battle. In 12 years, I have never seen a collection like Tayler’s. Knowing the plan she has for her beads is a true testament to how amazing she is.” 

“Tayler’s ability to overcome life’s curveballs has never been in question, it’s her mom and I who struggle,” says her dad, Shane. The brawny retired law enforcement officer takes great pride in being available whenever his daughter needs anything during multiple rounds of chemotherapy and doctors’ visits. On the evening of Tayler’s last round of chemotherapy at the hospital, he sits beside her bed stringing together the last of his daughter’s beads before a euphoric procession to ring the cancer bell at the end of the hall. Through a tunnel of cheering staff, cherished friends and fellow cancer patients, Tayler’s beads hang for all to see as she clangs the bright brass bell signaling the end of chemotherapy. It’s a joyous pageant to witness even if a little blurry through all the happy tears.