Olivia walks with determination. Barely two feet tall, she does not let her small stature stop her. At two years old, she is not afraid of letting everyone know what she wants. That fighting spirit is crucial these next few months. Olivia is battling acute lymphoblastic leukemia (ALL) and will be undergoing new, groundbreaking immunotherapy treatment.
Spearheaded by Alfred P. Gillio, M.D., director of the Children’s Cancer Institute (CCI) at the Joseph M. Sanzari Children’s Hospital at Hackensack Meridian Health, this program, provided in collaboration with Novartis Pharmaceuticals and as a member of a network of certified treatment centers, uses the first CAR-T Cell therapy, Kymriah, recently approved by the FDA, to treat children and young adults who have treatment-resistant acute lymphoblastic leukemia (ALL). Eligible patients will have exhausted all standard therapies and have refractory disease or have relapsed.
This approach, which harnesses a patient’s immune system to fight disease, involves engineering her own immune cells to recognize and attack cancer. This therapy has resulted in long-term remissions in the majority of patients treated to date. Hackensack University Medical Center is the only hospital in New Jersey offering this CAR T-Cell therapy. Tackle Kids Cancer funding supports the implementation of this program at CCI.
Olivia originally started her treatment at another hospital. However, when her cancer relapsed in October 2017, Dory, Olivia’s mom, reached out to Dr. Gillio and the physicians at the CCI for help.
“Dr. Gillio was incredible. We were able to have a dialogue. He is very open to being another voice – when we transitioned care it was very easy from our perspective.”
“Olivia is a perfect candidate for CAR T-Cell therapy because she relapsed so quickly after bone marrow transplantation and a second bone marrow transplant would likely be very toxic both in the short term and particularly in the long term,” explains Dr. Gillio.
“Olivia is a fun one. She is wise beyond her years. She’s an old soul. She makes people laugh with subtle humor. She loves building, having her nails painted, and beading.” Dory remarks that she has learned to enjoy stationary activities because she has been confined to a bed or a room for so much of her young life. “She goes into new situations so easily and will always ask the names of all the procedures and medicines. She likes to know what is happening and be part of the process.”
Dory and her husband, John, try to normalize the situation for Olivia and their other daughter, Erica, age 5. “Obviously this is something that you don’t plan for and once you are in it – can’t plan anything. You need to let everything go. You are not in control of a situation,” said Dory.
“Doing our own research and making sure we are comfortable with all the decisions being made has been crucial.” Dory and John have found a comforting surrounding at Hackensack University Medical Center.
“There is a team relationship, and the parents are part the care team – it’s a collaborative effort. The physicians take all aspects of the child’s health into account, and treat the family.”