Emily’s Story

In May 2010, Emily was diagnosed with acute lymphoblastic leukemia (ALL) when she was just five years old. Acute lymphoblastic leukemia is the most common childhood cancer and is curable in approximately 90% of children. The standard treatment protocol consists of 26 months of chemotherapy which meant that Emily would receive chemotherapy until she was seven years old. However, 16 months into treatment, Emily relapsed.
The 5-year survival rate for acute lymphoblastic leukemia is 85%-90%; however, 10-15% of children have a resistant form of the disease and relapse. Chances for a cure after relapse are less than 30%.
Since she relapsed while still getting treatment doctors knew that her leukemia was going to be more difficult to treat. They felt the best treatment option would be to pursue a bone marrow transplant (BMT). Emily was able to achieve remission again and continued to receive chemotherapy over the next three months in preparation for the transplant. Then, just two weeks before the transplant date in February 2012, Emily relapsed again. At this point treatment options were very limited because the leukemia had become resistant and would no longer respond to standard chemotherapy.

One Last Hope

In one last effort to beat the disease, Emily was enrolled in a highly experimental phase I clinical trial called T-Cell Therapy at Children’s Hospital of Philadelphia (CHOP). Emily was the first pediatric patient enrolled in the trial (then called CART-19 and now called CTL019) and became the first child in the world to have her immune system trained to fight cancer. The process involved collecting her T-cells (a type of white blood cell), genetically reprogramming them to recognize and attack cancer cells, and infusing the modified cells back into Emily’s blood. When the modified T-cells were infused back into Emily she became very sick and spent several weeks in the pediatric intensive care unit on a ventilator. At one point her doctor said she had only a 1 in 1000 chance of surviving the night; however, she fought very hard while her amazing and caring medical team worked around the clock trying to make her better. Emily also had thousands of prayers from friends, family, and strangers who became connected to her through her personal Facebook page.

Not only did Emily survive that night, but a few weeks later she was declared cancer free – the T-cell therapy had worked!

Emily’s treatment gained worldwide attention and her story has appeared in The New York Times, Forbes, PARENTS, 2014 Stand-Up-to-Cancer Telethon, HBO Vice, and the Ken Burns PBS documentary Cancer: The Emperor of All Maladies. A 3-minute documentary was also made about her treatment called Fire with Fire by Oscar-winning director Ross Kauffman.

Emily is now 11-years old and has been in remission for more than 4 years. She lives a happy, healthy life.
If you are looking for more information about the T-cell therapy, please click here.