Cayden Addison: Playing and Enjoying Childhood, Thanks to CAR T-cell Therapy

A Message from Courtney Addison, Cayden’s Mother

Cayden was only 3 years old when he was diagnosed with Philadelphia chromosome-positive (Ph+) acute lymphoblastic leukemia (ALL), in April 2020. Before his diagnosis, Cayden was full of energy, and he loved to eat. But then he started to complain about leg pain. We first thought it was just a growth spurt, but the pain got so bad that he could not walk. He also lost his appetite. That wasn’t like him at all, and I knew something was not right. It was the height of COVID-19, but I took him to the emergency room. All of his tests came back negative. I then talked to his pediatrician and after many blood tests, Cayden was diagnosed with leukemia. I just remember collapsing in my husband’s arms. My hands and feet went numb. My heart was pounding, and I sobbed. Cayden was always a very healthy child, and to go from a healthy, playful young boy to a leukemia diagnosis was devastating. I just remember being so shocked and overwhelmed, but we did not have the time to process the news because everything moved incredibly fast right after his diagnosis.

Cayden’s initial treatment was chemotherapy, and it started within hours of his diagnosis. Cayden experienced side effects from his treatment. He was constantly nauseous. His appetite changed. He would get moody from the steroids that he had to take. And in March 2021, he developed sepsis and a fungal lung infection and was hospitalized for over a month. After two years of receiving chemotherapy every day, we celebrated the end of his treatment in April 2022. Then in February 2023, his cancer relapsed. Initially, he received chemotherapy drugs that were similar to his first treatments. He then received a new type of immunotherapy drug, called blinatumomab (Blincyto). He had to wear a bag for 30 days so that he could constantly receive medication. Because Cayden’s leukemia is rare and affects only 3% of patients with leukemia, and has a high risk of relapse, his doctors suggested the possibility of CAR T-cell therapy.

We went to Duke University in North Carolina for CAR T-cell therapy. His doctors collected as many white cells as they could and shipped them off to the company that genetically engineered those cells to create the CAR T cells. Leading up to the treatment, Cayden had about three days of chemotherapy to prepare his body for the infusion. On the day of his treatment, three nurses infused CAR T cells into his body and that was it. He did not need to continue chemotherapy anymore. There are some preventative medications he has to take to protect his lungs and body from infection. But besides that, it was almost like a one-and-done type of thing and just monitoring afterward.

Cayden has been handling everything phenomenally since the treatment. He experienced a couple of days of nausea, but besides that, he’s been his normal playful little kid self, running around the house and eating well at home and outside. Immunotherapy is amazing. I wish he could have received this treatment the first go-around. With the regular chemotherapy, there were still some leukemia cells in his body. After immunotherapy, he has been in complete remission. He barely has any side effects at all. He is completely normal compared to when he received the standard treatment.

I say to members of Congress that funding for cancer research is vital. Immunotherapy and CAR T-cell therapy would not have been options without research. It is important that we continue to fund research so that our children do not have to go through this. We must find a cure and until that day comes, we need to find better treatment alternatives that have less harsh side effects. This experience has sparked a fire in me, and has forever changed my life. Our kids deserve better. I do not want any other family to go through what my family has gone through. Cayden has his whole life ahead of him. I don’t want him to have to deal with years of side effects. I don’t want this to be his whole childhood memory. I want him to have a life where he can do whatever he dreams for the rest of his life. Funding is critical so that we can continue to make advancements against cancer, including treatment options with less side effects so that Cayden and other kids affected by cancer do not have to deal with consequences of cancer treatment for rest of their lives.