Beyond the yellow brick road

    One gray, winter day a cyclone picked up tiny Ellen Taylor and plopped her into an alien land. How could she muster the wisdom, the courage and the heart to travel the difficult road ahead?

    When 5-year-old Ellen Taylor sings “Somewhere Over the Rainbow,” children stop and gape. Women catch their breath. Grown men wipe away tears. Even the most cynical listener is transfixed as Ellen’s angelic voice describes a place of childhood dreams—a Technicolor landscape of innocence and hope and possibility.

    A world where cancer has no dominion.

    Gathering storm

    Like Dorothy in The Wizard of Oz, Ellen led a routine life before the clouds rolled in during the fall of 2007. Her long journey began in November of that year, when Ann and J. Lee Taylor noticed bumps on the neck of their 3-year-old. The pediatrician calmly explained that swollen lymph nodes were common in young children. During the next three months, several physicians prescribed antibiotics in an effort to treat an assumed infection.

    By February 2008, Ellen had completed her third round of antibiotics. The knot above her ear had grown to the size of a golf ball, with a chain of smaller bumps extending down her neck to her collar bone. Exasperated and concerned, her parents demanded a more thorough exam. When a CT scan and X-ray were inconclusive, the Taylors took Ellen to a pediatric surgeon.

    The surgeon took one look and told them, “It’s an infection; don’t worry.”

    But—like the other doctors—the surgeon was wrong.

    Eye of the cyclone

    When a biopsy indicated that Ellen had cancer, J. Lee and Ann were stunned. “It was one of those things that you think happens to other people’s children,” says Ann, a registered nurse. “Something like that could never happen to us.”

    Doctors immediately referred Ellen to St. Jude Children’s Research Hospital. As the family arrived at the hospital gate, a security officer recognized the shock and devastation on their faces. Filled with compassion, he placed his hand on J. Lee’s arm. “You’re in the right place,” the officer said, reassuringly.

    “I think you’re right,” J. Lee responded.

    At St. Jude, testing revealed that Ellen had non-Hodgkin lymphoma, a cancer that originates in the lymph system. The tumor’s size and its proximity to the brain—combined with the long interval between its appearance and the diagnosis—prompted Ellen’s treatment team to categorize the cancer as stage III.

    Clinicians opted to treat her with a protocol designed for children with high-risk leukemia. “Leukemia and lymphoma are a spectrum of the same disease,” explains Raul Ribeiro, MD, of St. Jude Oncology. “Typically, lymphomas may be treated less aggressively, but Ellen had a really advanced stage of lymphoma, so we decided to treat her with a protocol that involves very intensive chemotherapy.”

    Treatments developed at St. Jude have increased the overall survival rate of childhood non-Hodgkin lymphoma from 7 percent in 1962 to the current rate of 80 percent. But Ribeiro estimated Ellen’s rate as closer to 90 percent.

    “From that moment on, we were able to breathe,” Ann says. “We weren’t able to relax, but we weren’t as afraid for her life. Dr. Ribeiro gave us hope. It was something to hold onto.”

    Medals for courage

    During her first week at St. Jude, Ellen was terrified of the alien world of tests, needles and scary medical equipment. She found refuge in the familiar songs, bright colors and magical plot of The Wizard of Oz. One evening, Ellen and her family were watching the scene in which the distraught Cowardly Lion wipes away tears with his tail. “Mama, I need one of those for when I go to St. Jude,” Ellen said, pointing at the lion’s tail.

    Hearing the request, Ellen’s aunt immediately fashioned a lion’s tail for the little girl. “For several months, Ellen took the tail with her every time she went to St. Jude,” Ann says. “Then one day, she decided that she didn’t need it any more. She had courage without it.”

    Ann and J. Lee attribute much of Ellen’s bravery to the compassionate care she receives at the hospital. During a particularly grueling segment of her treatment, Ellen had to receive one of her chemotherapy drugs as an injection.

    “She would start crying as soon as she saw the nurses put on their blue chemotherapy gowns, because that meant the shot was coming,” Ann recalls.

    Then Darlene Hawkins, RN, found a way to alleviate Ellen’s distress. She and Ellen held hands, closed their eyes, and repeated, “There’s no place like home. There’s no place like home. There’s no place like home.” The experience calmed Ellen like nothing else could do.

    “Ellen would start looking for Miss Darlene every time she knew a shot was coming,” Ann says. “I didn’t ask Darlene to do that, and Ellen didn’t ask for that. Darlene just did it, and that makes all the difference. Miracles happen here. People like Darlene happen here—the little miracles within the big miracles.

    “Doctors, nurses, nurse practitioners, pharmacists, care assistants, Child Life specialists, chaplains, volunteers, dietary staff, housekeepers—they all have a special gift for making a difference in the lives of children,” Ann continues. “It never fails to amaze me how freely they do that for their patients.”

    Grateful hearts

    During the past year, Ellen has received numerous chemotherapy drugs. Several times, her blood counts have fallen so low that chemotherapy has had to be postponed until her body could recover sufficiently. She is now about a third of the way through her treatment.

    J. Lee and Ann say that they are overwhelmed at the care their daughter has received.

    “They don’t hesitate to do what they need to for Ellen,” Ann says.

    For instance, when Ellen was receiving high-dose methotrexate, her system failed to clear the drug, causing a toxic buildup in her body. John Sandlund, MD, of St. Jude Oncology told the Taylors that the hospital had a special drug available that could alleviate the problem. Thanks to this “antidote,” the threat was averted. Later, Ann discovered through a pharmacist in her hometown that one dose of that drug was extremely expensive.

    “There was never a mention of cost; it simply was not a factor,” Ann says. “When Ellen needed the drug, St. Jude didn’t hesitate to use it.”

    Ellen’s mom and dad know that kind of care can occur only through the generosity of donors. “Their money contributes to the work of God,” Ann says. “From the bottom of our hearts, we offer our deepest gratitude to donors for giving our family a chance.”

    In the Taylors’ online journal, J. Lee echoes that sentiment, closing nearly every entry with a simple, heartfelt prayer: “Thank God for St. Jude.”

    Daring to dream

    After braving cancer treatment, Ellen is undaunted by the Wicked Witch of the West, winged monkeys or public performances. She has become quite adept at the latter, singing at many sporting events and St. Jude fundraisers.

    “She sang the national anthem at an event when she was 3 years old,” Ann says. “People went nuts. That’s when she learned how good it feels to receive a standing ovation. She just loves it.”

    Ellen’s mom taught her the words to “The Star Spangled Banner.” Her dad taught her the lyrics to Aerosmith songs. But her favorite tune remains “Somewhere Over the Rainbow.” Small hands clasping the microphone, Ellen belts out the song with a kind of fierce serenity:

    Somewhere over the rainbow
    Skies are blue,
    And the dreams that you dare to dream
    Really do come true.

    The song seems to resonate with her parents, too. “Thanks to St. Jude,” Ann says, “we still have all the dreams and aspirations that we had for Ellen before her diagnosis.”

    Reprinted from Promise Spring 2009

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