At age fourteen, after months of consulting with doctors for unexplained joint pains, Joe was diagnosed with pre B-cell acute lymphoblastic leukemia. As a child with Down Syndrome, Joe was at a higher risk for relapse, and ultimately failed to reach remission with chemotherapy. With the help of his doctors at Sick Kids in Toronto, he was enrolled in the CAR T-cell therapy clinical trial at Children’s Hospital of Philadelphia. Today, Joe is healthy and 5 years cancer free!
In his own words, Joe’s father Steve shares the story of his son’s diagnosis, challenges with standard treatment, and the journey to CAR T-cell therapy.
Joe Redmond was diagnosed with Pre B-Cell Acute Lymphoblastic Leukemia on January 17, 2017 at the Hospital for Sick Children (Sick Kids) in Toronto, Ontario. He had been experiencing joint pain for months and had been seen by a few doctors, but it wasn’t until he arrived at Sick Kids under the care of Dr. Hans Hitzler that our family was given the bad news.
After failing both the induction and consolidation phases of chemotherapy, Joe was in a precarious position. Joe has Down Syndrome, and children with Down Syndrome who fail consolidation and are refractory have a historically poor prognosis.
Dr. Hitzler had proactively explored the possibility of Joe receiving CAR T-cell therapy through a trial at the Children’s Hospital of Philadelphia (CHOP). Once Joe failed consolidation, Dr. Hitzler and his team fought on Joe’s behalf to have the necessary approvals be put in place for Joe to travel to Philadelphia to receive treatment at CHOP. While waiting for his cells to be manufactured, Joe was put on maintenance chemotherapy as a bridge to the CAR T-cell therapy.
In late August 2017, Joe travelled to Philadelphia for his injection of Car T-Cells, now commercially known as Kymriah. After conditioning chemotherapy, Joe received his first injection August 28, 2017. Coincidently, this also happened to be the same day that the FDA gave the drug manufacturer Novartis emergency use authorization for the commercial production of Kymriah. Joe received his second dose of cells the next day, August 29, 2017. The procedures went smoothly and Joe had no ill effects from the process, other than a fever spike around 7 days post infusion which resolved itself within hours.
On September 27, 2017, Joe received news that he was MRD negative and that he had zero B-cells. Unfortunately, this great news was short lived. After a routine post infusion lumbar puncture in mid-November, our family was told that the B-cells were returning, only 10 weeks post infusion. It was suggested that Joe be re-infused with some of the manufactured CAR T-cells that were still available. Joe returned to Philadelphia in December of 2017 and had the re-infusion performed just in time to be home for Christmas.
In January 2018, our family received news that the B-cells were again returning. While Joe was still in remission, the fact that he had been without B-cells for such a short period made the teams at both CHOP and Sick Kids feel that something more needed to be done to prevent relapse. Through February, options that were presented and rejected included stem cell therapy, the use of the drug Keytruda, or an injection of Humanized CAR T-cells. After heroic efforts by Dr. Hitzler and his team, as well as Dr. Grupp and Dr. Maude at CHOP, Joe was approved for the humanized CAR T-cell program.
Following conditioning chemotherapy, Joe received his humanized CAR T-cells in April of 2018. Joe had no side effects from the injection, but at day 28, he still had 2% B-cells. At this point (the end of April 2018) he had been in remission seven months and it was decided that no further therapy would be attempted.
For several months Joe had a low B-cell count and he continued to need occasional IVIG treatments. Joe received his final IVIG treatment in February of 2019 and has not needed any CAR T-cell related treatments since. Joe has now been in remission for 5 years and continues to be both healthy and happy!
Throughout his ordeal with cancer, Joe remained upbeat. He always had a joke to tell his doctors so that they would leave with a smile on their face.
Our family is forever grateful to Dr. Hitzler, Dr. Grupp, Dr. Maude and their teams at Sick Kids and CHOP, as well as all the researchers at Novartis and Dr. June’s team at the University of Pennsylvania.
We receive messages from families around the world with experiences similar to Joe’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.