No Fairy Tale
Like the star in a fairy tale, little girls dream of being a princess, dancing with a handsome knight at the majestic ball. While not a knight-in-shining-armor, thousands of people bestowed the title of princess upon Taylor Jones as they followed her battle against Acute Myeloid Leukemia (AML) on her CaringBridge site.
Diagnosed on September 30, 2008, then three-year-old Taylor rarely let the illness or treatments dampen her spirit. She faced four rounds of chemotherapy to kill her cancer and her bone marrow; a bone marrow transplant on February 5, 2009; and a long recovery. Without a bone marrow transplant, Taylor had a 0-20% chance of survival.
She has done more than survive. Somehow, through even some of the hardest days, spunky little Taylor managed smiles that sustained her parents. During treatments, she and her mom, Gina, danced and watched the movie "Happy Feet." "If her toes were tapping, we knew she was okay," Gina said.
Cheering for the Little Princess
So many moments and photos of this little princess's journey have been captured on her CaringBridge site, which was created during her first week of treatments. Gina was pleasantly overwhelmed by the guestbook entries and the connection to people who checked in daily. "It still just blows my mind that there are people all over the world praying for not just Taylor but for all kids with cancer," she said. In less than two years, "Honey Bear's" site has amassed nearly 500,000 visits and more than 10,000 guestbook greetings.
With Gina's family in Nebraska and her husband Shane's relatives in Illinois and Texas, Gina originally saw CaringBridge as a connection for them. She soon found an even greater purpose.
"We were blindsided because we couldn't find personal stories or non-medical information on AML, treatments and bone marrow transplants," she said. "I wanted to help other families understand the process." CaringBridge is Gina's means of connection with those families.
She begins her daily posts with "Day 189" or "Day 365" to give families an idea of what to expect and when.
Of course, treating cancer is not routine. Taylor faced difficulty along the way with cytomegalovirus (CMV), septic shock and the BK virus, which nearly claimed her life. Connecting with other cancer parents via CaringBridge was a source of encouragement for Gina because she realized they weren't alone. Now, she often expresses support in others' guestbooks to return the favor.
Taylor remembers that she wasn't alone through her cancer treatment and recovery. Her dance therapist, the child-life specialist and the nurses are more often recalled than the pain and vomiting. And, of course, she won't forget her family. Her mom never left her side and her dad and brothers were there for her treatments in Colorado Springs through the transplant and recovery in Denver.
Shane said he was able to manage the day-to-day activities by focusing on the future. "I kept going in the hope that one day she would be all better and this would be behind us. And I had faith in Taylor's strength."
One year after her bone marrow transplant and nearly five years old, Taylor has a 90% chance of survival. As she's gone from being too weak to walk to taking her first ballet class, CaringBridge has been there to capture it all...and all her smiles, too.