It was early 2012 when our daughter, Emily, relapsed for the second time since being diagnosed with acute lymphoblastic leukemia two years prior. Chemotherapy hadn’t worked for her, and we had few options left.
When we first learned about the CAR-T cell therapy trial at Children’s Hospital of Philadelphia, we hesitated. Phase I clinical trials are generally considered a last resort, we thought—something you do when you don’t have much hope left. But when it became evident that Emily wouldn’t be eligible for a bone marrow transplant, hope was what we needed.
On April 17, 2012, Emily received the treatment and became the first child in the world to have her immune system trained to fight cancer. When her bone marrow was tested a few weeks later, no evidence of cancer cells remained.
Almost immediately, Emily’s story received worldwide attention. We have since had the opportunity to travel and make great memories while spreading awareness about the treatment that kept us together as a family.
Since Emily got better, everything we do as founders of the Emily Whitehead Foundation is intended to pay it forward and ensure that more kids survive when chemotherapy doesn’t work. We are motivated every day by the children who didn’t have the same chance at hope that we did.
Right now, the parents of many children with other types of cancer don’t have hope if their kids relapse. That’s why we do everything we can to give parents a support system and raise money to fund research that will help more kids survive.
While the CAR-T treatment Emily received was approved in August 2017, only patients who have relapsed or are resistant to chemotherapy are eligible. By supporting further research, we hope such treatments will not only be developed for all cancers but will become the standard of care—not just a last resort.
As of May 2018, Emily is six years cancer-free. While the media attention and being recognized everywhere doesn’t particularly excite her, she understands the importance of talking about being first and is very proud now that the treatment is helping others.
With the exception of a B-cell deficiency, a result of the treatment eliminating both healthy and cancerous cells, Emily’s health is normal—something that is not always the case for pediatric cancer survivors.
We’re still often asked how Emily is doing. We say that when you see her with her friends, you can’t tell anything ever happened to her.
To us, that is what a cure looks like. And that is the happy ending we hope to activate for all children fighting cancer.