Emily was 7 when she started to have pains in her hip. Her parents took her to the doctor, and a series of tests eventually led to the news that she had acute lymphoblastic leukemia (ALL). It was the beginapning of a long journey, one that would take them to Philadelphia for an innovative cancer treatment.
After her initial diagnosis, Emily began chemotherapy right away in Cleveland, not far from the family’s home. For the next 2 1/2 years, she was in and out of the hospital for treatment. When she finished, Emily’s cancer was in remission. But six months later, she started limping again. A bone marrow biopsy showed that the cancer was back.
The next step in treatment was a bone marrow transplant. At 10 years old, Emily underwent more chemotherapy and full-body radiation to prepare for the transplant. The transplant itself triggered a chain reaction of devastating events. Emily spent weeks on life support and had a stroke. When she regained consciousness, she was temporarily paralyzed on her right side. “She had to learn to walk again, to talk again,” says her mother, Kim. “Life just became the hospital. It was devastating.”
The silver lining was that Emily was in remission again. She remained cancer free for the next four years. Once she had recovered from the stroke, she had a long stretch of normal life. She attended school regularly and spent time with friends.
A second relapse and new options
In January 2014, halfway through her freshman year in high school, a routine blood test detected signs that her leukemia was back. A bone marrow biopsy and lumbar puncture confirmed the diagnosis.
“The first time it’s hard enough,” says Kim. “The second time it’s worse. And now we have a third time after having a bone marrow transplant. So you know the prognosis is not good.” Emily’s doctors wanted to put her back on the bone marrow registry list for another transplant, but her parents didn’t want to put her through that again.
By a fortunate coincidence, Kim has a cousin who is a pediatric oncology nurse. A year earlier, the cousin had posted a link on her Facebook page about Emily Whitehead and her successful treatment at Children’s Hospital of Philadelphia (CHOP) with experimental immunotherapy. At the time, Kim had thought it was an amazing development. Now she realized that this might be an answer for her daughter.
She called CHOP’s Cancer Immunotherapy Program and spoke with an access coordinator, who explained the clinical trial and application process. When they reviewed the details, Emily’s doctors in Cleveland agreed that it was worth a try, and supported the family in the application.
Reprogramming Emily’s T cells
As part of the screening process, and to learn more about the treatment, Emily’s parents brought her to Philadelphia to meet with Susan Rheingold, MD, and Shannon Maude, MD, PhD, two of the doctors involved in the clinical trial. The doctors explained how T-cell therapy works.
In ALL, the cancer arises from one type of white blood cell — the B cells — that fight disease in a healthy body. In the experimental treatment, T cells, another type of white blood cell, are collected from the patient’s blood and reprogrammed in a lab to find and kill B cells, including cancerous B cells.
The treatment had only been tested on a small number of children at that point, but it was showing promising signs of success. Patients who received it had different reactions. Some became quite sick as the reprogrammed T cells multiplied and attacked the leukemia. Others had only minor reactions. But a high percentage ended up cancer free.
Emily was accepted into the trial. Her T cells were harvested through a process called apheresis, then sent to a lab for reprogramming. Three months later, after another round of chemotherapy in Cleveland, Emily was back at CHOP for treatment.
As momentous as the promise of T-cell therapy was, the actual delivery was very simple. The family stayed in the nearby Ronald McDonald House and Emily came in for the injection of her reprogrammed T cells as an outpatient. An hour after the infusion, she was free to leave, with instructions to stay nearby and come back if she started to show signs of a reaction.
Managing adverse reactions
Emily did have a reaction. It began as a fever about six hours after the infusion, and she was admitted to the oncology floor. The reaction grew more intense. Emily was experiencing what’s called cytokine release syndrome, caused by the reprogrammed T cells’ rapid growth. Experts at CHOP designed the plan used to manage this serious response to T-cell therapy, so Emily’s team was well equipped to handle her case.
Within two days, her blood pressure became unstable, and she was moved to the Pediatric Intensive Care Unit (PICU). “They told us she would get really sick,” says Kim. “They told her that she would have a fever, that she would be confused and start talking crazy. And she did everything they said she was going to do.”
It was a scary time for both parents. Emily was sedated and unable to talk for about a week. But she came out of it, and Kim will never forget the moment. “It was 4 in the morning, I hear her voice say, ‘Where’s my mom?’ She was wide awake. She asked me, ‘Am I still in Philadelphia? Did they give me my T cells?’”
From there, Emily bounced back quickly. A week after she woke up she was out of the Hospital and feeling well enough to go to a nearby beach in New Jersey. And more importantly, the treatment had worked. Within a month the leukemia cells were gone. Her tests came back showing no evidence of disease.
Life after cancer
Emily was back at school for her sophomore year that fall. She worked extra hard to make up for the time she had missed the previous spring. By her senior year, she had a 4.0 grade point average and was in the thick of normal teenage life, spending time with friends, getting ready for senior prom and looking ahead to college.
She has a special interest in biology and lab sciences, perhaps influenced by the scientific work and the medical breakthroughs that saved her life.
"My experience at CHOP was amazing, to say the least,” Emily says. “I didn't know it was possible to have so much fun while being treated for a disease that's so horrible. Nor did I think it would be so easy to become close with everyone I met — doctors, nurses, other patients and their families. The medical professionals in the Oncology Department at CHOP give so much of their time and dedication to not only healing their patients, but to their well-being too. If it wasn't for them, I would not have been given a third chance at life. I wouldn't be here today, planning to graduate high school, choosing a college, and living a happy, healthy normal teenage life."