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Emily's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Emily Whitehead by her mom, Kari.

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Emily Whitehead by her mom, Kari.

Emily was diagnosed with standard risk pre-b acute lymphoblastic leukemia on May 28th, 2010, shortly after her fifth birthday. Her oncologist explained that it is the most common form of childhood cancer, and is curable in more than 85 percent of children. Although Emily had a long road ahead of her - 26 months of chemotherapy - we were very optimistic that she would complete treatment and be fine.

From the beginning, however, her treatment never went as expected. Within the first few weeks she developed life-threatening infections in both legs that required surgery. The surgeon said the infection was spreading so fast she may not make it through the surgery and if she did there was a good chance he would have to amputate one or both legs. Thankfully, amputation was not necessary, and they were able to get the infection under control. But the doctors said they had not seen infections like that in over 10 years. In Emily's first month of treatment we went from being devastated with being admitted to the oncology wing of the hospital to celebrating leaving the pediatric Intensive Care Unit and getting back to the oncology wing. Emily went into remission in her first month of treatment. The doctors told us that she had one of the worst intensification phases they could remember, and that hopefully her remaining treatment would go better.

Seventeen months into treatment we learned that Emily had relapsed. Since she relapsed while still getting chemotherapy she was now considered to be high risk and went from having an 85 percent chance of being cured down to 30 percent. Emily went through four months of intensive chemotherapy in preparation for a bone marrow transplant, which was scheduled for February 2012; however, two weeks before her transplant date she relapsed again. After another month of chemotherapy did not get her back into remission we learned she was no longer eligible for a bone marrow transplant. Doctors felt it was unlikely that further treatment would get Emily back into remission. Our options were to take her home to spend the few weeks we had left with her or take her to Children's Hospital of Philadelphia (CHOP) and enroll her into a phase I clinical trial that had never before been tried on a child. It was a glimmer of hope and we knew that it was Emily's only possible chance of getting back into remission.

The research team explained to us that as part of the clinical trial her T-cells would be taken out of her blood and sent to a lab where scientists would train the cells to recognize and kill cancer cells. On April 17, 2012, the modified T-cells were injected back into Emily. She became very ill from the treatment and spent several weeks in the ICU on a ventilator. Emily never gave up and continued to fight while doctors worked around the clock to figure out why she became so sick. She held on long enough for doctors to administer a medication that dramatically improved her condition. However, because she had become so sick, she had been given steroids in the ICU; it was thought that the steroids had likely killed the modified T-cells before they had a chance to kill the cancer cells. We were back to thinking again that there wasn't any hope left. Then on May 10, almost four weeks after receiving the modified T-cells, her bone marrow was checked for cancer cells and we heard the words "Emily is in remission." The treatment had worked!

Emily-whitehead-cancer-freeEmily recently celebrated one year cancer free! Today, if you hadn't heard her story, you would never know that early last year she was only given a few weeks left to live. She is finishing 2nd grade at the top of her class. She loves writing, dancing, playing with her dog Lucy, and plans to one day become a veterinarian, a teacher and an artist. 

http://www.caringbridge.org/visit/emilywhitehead/journal
http://www.facebook.com/emilybrookewhitehead
http://emilywhitehead.com/


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