Diagnosis. Today, Tara Ney is a spirited and kind nine-year-old who is enjoying fourth grade and making new friends. But nearly six years ago, just a few weeks before her fourth birthday, Tara was diagnosed with Ewing’s sarcoma. By the time of diagnosis, her cancer had already spread to her lungs and pelvis.
Treatment. Treatment consisted of an aggressive chemotherapy regimen that lasted eight months. Tara also underwent seven weeks of radiation to the primary tumor on her scapula and metastatic sites. She handled treatment well, maintaining her remarkable feistiness and love of action and games, including racing her mother down the hospital halls to the elevator after completion of her daily radiation treatments. When she finished radiation and chemotherapy, Tara enjoyed a six-week break and then underwent a haploidentical (deliberately mismatched) bone marrow transplant. This was an investigational treatment for sarcoma with a different rationale than other bone marrow transplants.
Relapse. Nearly three years after she finished treatment for her initial diagnosis, regular scans revealed that Tara had a reoccurrence of Ewing’s sarcoma—this time in the form of a large tumor inside the back of her skull and a small metastasis on her spinal cord. Very soon after, she began a clinical trial involving immediate radiation therapy to her relapsed sites in combination with another investigational treatment, an immune therapy. So far, this combination therapy has been effective in keeping the cancer in check. In April 2021, Tara will turn ten years old, mark six years since diagnosis, and enter her third year of immunotherapy treatment.
Today. Currently, Tara has stable disease; the tumor on her spinal cord has been completely eradicated, and the tumor inside of her skull has shrunk and collapsed. Her body appears to be removing it, hopefully with the benefit of an immune system now trained to recognize and battle sarcoma if it ever occurs again. To monitor her for any new malignancies she undergoes an MRI and a CT scan every three to four months.
Our Reflection. From the beginning, we knew we were dealing with an aggressive cancer that has frighteningly high relapse rates. We felt strongly that we couldn’t rely on traditional treatment protocols because results of those treatments were so poor. There is no standard of care for metastatic Ewing’s sarcoma for the same reason. Frustratingly, the sarcoma treatments available in pediatric oncology today are essentially the same as they were at the advent of chemotherapy in childhood cancer more than fifty years ago. There have been no new chemotherapies approved for pediatric sarcoma in more than forty-five years. Unfortunately, these treatments remain highly toxic and remain woefully ineffective in preventing the spread of cancer.
Looking Ahead. Seeing Tara ice skate, play tennis, ride bikes, and enjoy all of the things kids her age should be enjoying brings our family much happiness and inspiration. We hope she will continue to beat the odds and thrive despite all that she has been through. We fervently wish that for everyone facing childhood cancer. Our family’s hope is for the development of less toxic and more effective treatments for the pediatric childhood cancer community.
Thanks. We would like to thank the many dedicated, persevering, and brilliant childhood cancer clinicians and researchers. Our sincere and heartfelt thanks go as well to all who have supported Tara and the more than 300,000 kids worldwide who are diagnosed with cancer every year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
