At just 18 months old, following a series of unexplained symptoms, Kaitlyn was diagnosed with acute lymphoblastic leukemia. When her doctors revealed that she had relapsed three years into standard treatment, she was enrolled in the CAR T-cell therapy clinical trial at Children’s Hospital of Philadelphia. Today, Kaitlyn is healthy, active, and remains 7 years free of cancer!
In her own words, Kaitlyn’s mother Mandy shares the story of her daughter’s diagnosis, relapse, and the journey to CAR-T.
The word “Ouch!” had become common around the house with a young child on the loose. But, at 18 months old, “Ouch!” was starting to have an uneasy feeling attached to it.
What followed was a week of unexplained symptoms, including bruising, fatigue, fever and petechiae. As a precaution we scheduled a checkup with Kaitlyn’s pediatrician.
Our visit to the doctor started like the others before, vitals and smiles. Things changed when the doctor returned with the results of the labs she had previously ordered. She walked in to the room briskly, found her seat and with a set of glassy eyes said, “we don’t like the labs”.
She continued speaking to us, although all the details were forgotten when she said, “we are not certain, but it looks like leukemia”.
Our hearts had just stopped and the world stood still.
Starting in 2011, Kaitlyn under went three years of treatment at Children’s Hospital of Dallas for high risk acute lymphoblastic leukemia (ALL). During that time she experienced all the ups and downs associated with standard cancer treatments and eventually was given a clean bill of health in early 2014.
Six short months following treatment, Kaitlyn was seen for a routine follow-up appointment. The appointment was going great, her doctor said she looked amazing and sent us on our way. But then, before we could get down the hallway, her doctor stopped us and said, “something is wrong”.
Our world once again spiraled out of control. Kaitlyn had relapsed.
After completing the 30 day induction phase of treatment we expected Kaitlyn to be disease negative and starting the long road to being cancer free once again. Unfortunately, Kaitlyn was not responding to treatment and we feared the worst.
However, Kaitlyn’s team of doctors contacted the Children’s Hospital of Philadelphia (CHOP) and enrolled her in the CART19 CAR-T cell therapy clinical trial. Kaitlyn received her modified T-cells in February of 2015 with limited side effects.
Since receiving CAR-T, Kaitlyn has been an extremely active young lady. She travels every chance she get and loves spending time with family and friends. She is currently in the 7th grade, is a junior cheer coach, and has expressed interest in becoming a pediatric oncologist.
Today, Kaitlyn is now seven years post infusion with no signs of cancer!
We receive messages from families around the world with experiences similar to Kaitlyn’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find an eligible CAR T-cell therapy treatment center.
To search for available CAR T immunotherapy clinical trials, visit our Pediatric Cancer Clinical Trial Finder. To help us in our mission to give children around the world the opportunity to Activate the Cure to their cancer, Get Involved or Donate now.