The Cure Wasn’t The End, It Was The Beginning | Emily Whitehead & Tom Whitehead | TEDxFargo

Key Concepts

• Acute Lymphoblastic Leukemia (ALL): A type of cancer that affects white blood cells.
• Chemotherapy: A cancer treatment that uses drugs to kill cancer cells.
• Bone Marrow Transplant: A medical procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells.
• CAR T-cell Therapy (Chimeric Antigen Receptor T-cell Therapy): A type of immunotherapy where a patient's own T-cells are genetically modified to recognize and kill cancer cells.
• Immune System Training: The process of modifying the immune system to target specific diseases, in this case, cancer.
• Patient Advocacy: The act of speaking or acting on behalf of patients to promote their health and well-being.
• Emily Whitehead Foundation: An organization founded to help other children and adults find advanced therapies for cancer.

Emily Whitehead's Journey with Leukemia and CAR T-cell Therapy

This transcript details the extraordinary journey of Emily Whitehead, the first child in the world to have her immune system trained to beat cancer, and her family's subsequent advocacy.

Early Diagnosis and Treatment Challenges

Emily was born healthy in May 2005. Just after her fifth birthday in May 2010, she was diagnosed with acute lymphoblastic leukemia (ALL) at Hershey Children's Hospital. Initially, doctors described it as a "garden variety" cancer with an 85-90% cure rate through 26 months of chemotherapy.

However, Emily's treatment faced immediate and severe complications. Within two weeks of starting outpatient chemotherapy, she developed infections in both legs. The chief of surgery at Hershey informed her parents that amputation might be necessary to save her life. While her legs were ultimately saved, Emily spent the first month in the intensive care unit (ICU).

Despite these setbacks, Emily achieved remission within that first month and maintained it for 16 months. In October 2011, during a routine blood check, she relapsed. The recommended protocol was a bone marrow transplant, with a survival rate now less than 30%. A non-related donor was identified, with the transplant scheduled for early February 2012.

The Advent of CAR T-cell Therapy

As preparations for the transplant were underway in mid-January, a significant hurdle arose: the donor's cells would not be available until the last week of February. In mid-February, Emily relapsed again. Doctors advised her parents to take her home.

In a pivotal moment, Tom Whitehead, Emily's father, contacted the Children's Hospital of Philadelphia (CHOP) seeking any available hope or clinical trials. Coincidentally, the CAR T-cell trial had just opened the day before, and it had never been tested on a child globally.

Emily was transferred to CHOP on March 1, 2012, and met Dr. Steven Grup and his team. They explained the CAR T-cell therapy process: Emily's T-cells would be extracted, genetically modified in a lab to recognize and attack her cancer, and then reinfused.

CAR T-cell Treatment and Critical Illness

After her T-cells were collected on March 6, Emily had to remain in isolation for six weeks due to her compromised immune system. On April 17, 2012, Dr. Grup announced that her cells were "trained" and ready for reinfusion.

The reinfusion occurred over three days: 10% on day one, 30% on day two, and 60% on day three. The genetically modified CAR T-cells were capable of killing approximately a thousand tumor cells each. Emily, weighing around 68 pounds, had three and a half pounds of cancer. The rapid and massive cancer cell death overwhelmed her system, leading to her transfer to the pediatric ICU.

In the ICU, Emily was placed in an induced coma and put on an oscillating ventilator for 14 days. Doctors expressed that her survival was medically difficult to explain. However, during this critical period, the medical team identified an arthritis drug, never before used on a cancer patient, that they believed could combat the severe side effects.

Recovery and Becoming a Pioneer

The administration of the arthritis drug led to a rapid and remarkable recovery. Within hours, doctors observed an unprecedented improvement. This intervention saved Emily's life, and she awoke on her seventh birthday, after a 14-day coma. Eight days later, she was declared cancer-free.

The transcript highlights the stark contrast: 22 months of standard treatment failed Emily twice, while the modified CAR T-cell therapy resulted in her being cancer-free in just 23 days.

Life After Treatment and Advocacy

Emily and her family returned home on June 1, 2012. After a six-month waiting period for peer review, their story gained significant media attention, including an article in The New York Times in December 2012.

Emily, now 20, reflects on her experience. She describes herself as "genetically modified" and embraces the term. While she doesn't recall the hospital stay, her father would speak to her, even in a coma, about becoming a hero and meeting the president. This prophecy came true when she met President Obama, who famously provided her with a school excuse for missing school to visit him.

Emily is currently a junior at the University of Pennsylvania, majoring in English with minors in creative writing and photography. Her love for reading, fostered during her hospital stays, continues to be a significant part of her life. She notes the poignant fact that her dorm building at Penn was one she had driven past countless times on her way to hospital appointments.

The Emily Whitehead Foundation and Future Hopes

The global media attention following The New York Times article led to an influx of calls from parents worldwide whose children were on hospice. This inspired the founding of the Emily Whitehead Foundation, with the mission to "pay it forward" and help other children and adults find advanced therapies. The foundation now receives many calls from adults seeking similar outcomes.

Emily is recognized as "patient one" in what is considered the fourth pillar of medicine for cancer: training the immune system, alongside surgery, radiation, and chemotherapy. This approach, when successful, is significantly less toxic.

The message from Tom and Emily Whitehead to those still fighting cancer is to conduct thorough research, trust instincts, and never give up hope if standard treatments are not working. The Emily Whitehead Foundation offers support in navigating advanced therapy options.

Emily expresses her hope for a future where no child endures prolonged hospital stays, where the word "cancer" carries less weight, and where every survivor receives the necessary support to thrive. She emphasizes that being a survivor means continuing the fight with continued care, compassion, and community. Her ultimate goal is for childhood cancer not to define a life.