Tori Lee

At age five, Tori was diagnosed with Acute Lymphoblastic Leukemia. Following years of standard treatments, Tori became the 10th patient to receive her genetically engineered T-cells in the CAR T-cell trial at CHOP. Tori is now healthy and celebrating 4 years cancer free!

In their words, Tori’s parents Chris and Dana Lee share the story of their daughter’s diagnosis, treatment options and the journey to T-cell therapy.

Victoria (Tori) Lee is the youngest of four girls. In 2008, she had just turned 5 and had begun kindergarten, when we grew concerned with recurring ear infections, and general exhaustion and bouts of unexplained vomiting. After having blood work at her local pediatrician, she was sent to Monmouth Medical Center in Long Branch, NJ, where she was diagnosed with Acute Lymphoblastic Leukemia.

She began the standard treatment protocol immediately, but was a delayed responder — meaning the chemotherapy did not work as quickly to eradicate her cancer cells. Her treatment plan was then lengthened, and she went through a year of very high dose chemotherapy. She was in the Maintenance stage of treatment when a routine spinal tap detected cancer cells in her spinal fluid. Thus a new, more intensive 2 year treatment plan began including chemo and cranial radiation.

After 2 more years of grueling treatment, Tori once again relapsed in November 2012, in both her bone marrow and spinal fluid, and a bone marrow transplant was her last option.

Prior to preparation for a bone marrow transplant at the Children’s Hospital of Philadelphia, Tori’s doctors decided to have her T-cells collected as a back up plan. Doctors explained that there was a new study underway at CHOP, and if she was unable to get into remission (required for bone marrow transplant) she would be eligible for this new T-cell study.

While she started prepping for the BMT with more high dose chemo, we looked more into the T-cell study, and reached out to the Whiteheads to learn more about Emily’s story. The more we learned, the more hopeful we were that Tori might benefit from being part of the study. She had been through over 4 years of grueling treatment (including over 300 nights in the hospital dealing with side effects and infections) and we were fearful that the extreme nature of a bone marrow transplant might be too much for her weakened body.

Although Tori did reach remission, thus making her eligible for a bone marrow transplant, we decided to petition the study board to have her included in the T-cell study, as we felt she had a better chance of survival with this option. We always felt her cancer cells were never fully eradicated by the chemo, and feared that she would relapse again after transplant.

Thankfully, Tori was accepted into the study. Her cells were taken in December 2012, and after engineering, infused in April 2013, while she was technically still in remission. She was patient #10 in the original pediatric study. Tori experienced expected side effects from the T-cell infusion, being hospitalized for 5 days following with fevers and severe headaches. Following that hospital stay, Tori returned home and was back in school one month later. She has not been hospitalized since, and has been cancer free for 4 years.

Tori’s quality of life since the T cell therapy has been amazing. She’s back to being a regular kid again — in school, playing sports, enjoying time with family and friends. She goes to CHOP twice a year for blood work, and receives bi-monthly infusions to boost her immune system.

This treatment has saved Tori’s life. It was the miracle we needed, and we will forever be indebted to the team at CHOP for giving us the most precious gift in the world.

We only hope that this kind of ground-breaking medical treatment will one day be the standard treatment plan for all children. Antiquated chemotherapy and radiation protocols cause lifelong side effects, and in addition to being harsh and often disabling, don’t always work. Our kids deserve better. We must be their voice and fight to make a difference in the world of pediatric cancer.

We are thrilled to support the Emily Whitehead Foundation as they strive to make these types of immunotherapy treatments a reality for many, many more children. It takes a village!

Update (6/11/20):

We’re making it our mission to change the standard treatment narrative for all kids fighting childhood cancer. We want a different journey for these heroes – one without toxic treatments, fear of relapse, or loss of life. We need to write a better story for children fighting cancer. Donate Today