Bead-azzled During Pediatric Cancer Awareness Month

Tayler Ellison has 2,658 reminders of her courage. 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 their stories with colorful beads that acknowledge each step of their treatment — 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 60,000 children in 14 countries. 

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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 with no memory of the battle beyond the 600 colorful beads her parents saved for her. 

But in 2018, no longer shielded by youth’s innocence, Tayler’s courage would again be tested. At 14, she was diagnosed with osteosarcoma, a bone cancer in her right jaw. This time she remembers everything about the chemo and complex surgeries to rebuild her jaw. Another 1,100 beads were added to her collection, a small token of the fearlessness and battle she can summon to a fight.  

“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. The admiration shows on the doctor’s face even before she enters Tayler’s room.  

“Tayler is beautiful and kind and also incredibly strong, with maturity well beyond her years,” adds Mayer.

After her relapse six years ago, Tayler’s family learned she was genetically predisposed to cancer from a gene mutation called Li-Fraumeni syndrome. Her’s is mosaic, present in some, but not all, cells and developed in útero.

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

“Tayler’s ability to overcome life’s curveballs has never been in question,” says her dad, Shane. “It’s her mom and I who struggle.” The brawny retired law enforcement officer takes great pride in being available whenever his daughter needs anything during doctors’ visits. 

On the evening of Tayler’s last round of chemotherapy, before a euphoric procession to ring the cancer bell at the end of the hall, she moves through a tunnel of cheering staff, cherished friends, and fellow cancer patients. Her beads hang for all to see as she signals the end of chemotherapy. It’s a joyous pageant to witness even if a little blurry through all the happy tears.

Visit Johns Hopkins All Children’s Hospital Cancer and Blood Disorders Institute to learn more about the hospital’s hematology and oncology services.  

*Presented by Johns Hopkins All Children’s Hospital