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North Texas Child With Leukemia Turns To Experimental Treatment

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NORTH TEXAS (CBSDFW.COM) - A family from Royse City has traveled to Philadelphia to begin an experimental treatment that could save the life of four-year-old Kaitlyn Johnson.

It's called the CART 19 Study – named after the modified cells called chimeric antigen receptor 19 or T-cells.

"It seems to be a wonderful treatment that has showed promise and in our situation that's where we need to be," says Kaitlyn's father, James Johnson.  The family arrived in Philadelphia Monday.  But it was a much longer trip than anticipated.  Their flight from Atlanta to Philadelphia was cancelled so the family drove the rest of the way in bad weather.  Mr. Johnson says his daughter keeps them pushing forward, looking for a treatment that will work.

"You know most parents think of themselves as the strong one in the group and they want to be there for child. In actuality Kaitlyn is the one that's there for us," Johnson says.

Kaitlyn qualifies to be a patient in this study because traditional chemotherapy treatment did not lead her cancer into remission.  Those qualified range in age from one to 21.

"This is a unique and novel way to try to use the patient's own body, or their own immune system, to try to kill cancer cells" says Dr. John Wickiser, Pediatric Hematology and Oncology at Children's Medical Center Dallas.

Doctors at Children's Medical Center Dallas removed white blood cells, T-Cells, and sent them to Children's Hospital of Philadelphia.  That part of the procedure was done in August, but due to a long waiting list of pediatric patients, it's taken until now for her treatment to advance.

"Essentially what this is, is taking the body's immune cells out, infecting them with a virus that allows them to attack Leukemia and giving them back to the patient, allowing their immune system to attack the Leukemia and cause the Leukemia cells to die," says Dr. Theodore Laetsch, one of the physicians at Children's Medical Center trying to bring the study to Dallas.

According to Children's Hospital of Philadelphia, the T-Cell therapy was awarded "Breakthrough Therapy" designation by the U.S. Food and Drug Administration last July.  Doctors say the treatment has a high success rate but because few patients were involved in the initial study, and long-term success is not yet known. The goal is to move the patients into remission for the rest of their lives, but since the study is only two years old, and patients have had varying degrees of success, the number of patients participating in the study is growing.

Dr. Laetsch says efforts are underway to take the CART 19 study to hospitals across the country and Children's Medical Center Dallas is actively applying for that designation as well.

Doctors also warn parents the possible side effects of the treatment can be very serious.  Doctors say the treatment triggers a highly-active immune response which can cause difficulty breathing, low blood pressure and affect liver function. Many of the patients had to be treated in the Intensive Care Unit, so a large team of medical experts is needed at any hospital vying for this still experimental cancer treatment.

"It's always scary to go down a road that is not very traveled and then to jump to a road that is hardly traveled at all. It's terrifying," says Kaitlyn's father, James Johnson.

The Johnson's hope the treatment not only helps Kaitlyn, but other families looking for a cure for Leukemia.

Meantime, they've set up a GoFundMe web page.

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