Cole M

Cole’s Story

In 2006, Denise and Chris learned their two-year-old son, Cole, had acute lymphoblastic leukemia in his bone marrow (ALL). Cole received standard-of-care chemotherapy at a hospital close to home in Florida, and continued chemo until he was five years old. Then, just five months away from being cancer-free for five years, Cole’s cancer relapsed in both his bone marrow and spinal fluid. He resumed chemotherapy, which cleared the ALL in his bone marrow, but not in his spinal fluid. Denise and Chris then brought Cole to Dana-Farber Cancer Institute/Boston Children’s Hospital for a second opinion, where Cole ultimately received a bone marrow transplant (BMT) from his brother in November 2014.

Three years after the BMT, Cole’s cancer reoccurred once again in his spinal fluid, and his care team at Boston Children’s Hospital indicated he was a perfect candidate for chimeric antigen receptor T cell (CAR T) therapy, which involves extracting a patient’s own immune cells, genetically altering them to target specific markers found on cancer cells, and then reinfusing them back into the patient so that the immune system is able to fight the cancer.

On June 6, 2018, Cole became one of the first pediatric patients at Boston Children’s Hospital to receive CAR T cell therapy. Cole experienced side effects, including cytokine release syndrome, which alarmed his parents. However, the major side effects subsided after three months, and Cole was able to return to his normal life.

Cole and his family are now celebrating his one-year anniversary post-immunotherapy. Cole is looking forward to turning 15 years old this fall, enjoying nature, traveling, and fishing with friends and family.

Questions and Answers

CRI: How and when did you first learn you had cancer?
Denise: Cole was almost two when he was first diagnosed at a checkup appointment. He had a cold that week and a fever. Luckily, they did blood work, because at two years is when they check iron levels, and they saw that two of his blood components were low. So they sent us for further testing, and that led to his leukemia diagnosis.

We learned about Cole’s first relapse at a regular eye appointment. The optometrist thought that he saw a little swelling in Cole’s optic nerve, so that led us to go to an ophthalmologist. Through a series of tests they saw that indeed it was swollen, and then that led us to an MRI that was negative for anything. Then that led us to both a bone marrow aspirate and an LP and then that’s where they found out that he had relapsed.

The last time he relapsed was last year. He was at school and had stroke-like symptoms. That led us to have the MRI and then the lumbar puncture and bone marrow aspirate.

CRI: How did you learn about immunotherapy and why did you decide to do it?
Denise: The first time I learned about immunotherapy is when I talked to Dr. Margossian in Boston last year (2018). He said that they take cells, they modify them, and they put them back in your body. I had so many questions. Because I’m like: how does this work? Dr. Margossian told me the process you had to go through to get the cells. I wanted to know what was going on inside of my body.

CRI: What was treatment like? Did you have any side effects?
Denise: Cole got the CAR T cells on Thursday, and that Sunday night he started having aches toward the back of his neck. He and his brother had been playing so at first we were wondering if it was from that. And then he started getting a fever and steadily, as time went on, his blood pressure was getting lower. So he ultimately, for the first time, he stayed out of ICU. It was amazing. And so the doctors started the prophylactic Tylenol, and they sent him up to ICU so that he could be monitored.

And so that was the start of the cytokine release syndrome (CRS), which lasted about three days. The doctors closely managed him during that time. He wasn’t himself at all over those three days⁠—he had neurological issues. That was the scariest time because he was like a totally different person, and you just wonder what’s happening. But in the same regard we knew then that the CAR T cells were working. So it was kind of a bittersweet feeling.

After three days, he woke up, he returned to his normal self, and had no recollection of what had happened.

CRI: How did immunotherapy compare to other treatments you may have received, if any?
Cole: The bone marrow transplant took a long time. It took more of a toll on my body than the immunotherapy. The immunotherapy felt like it went by so much faster. It affected me, but not as much as the bone marrow transplant did.

Denise: A cancer diagnosis is extremely disruptive to your life and those around you. But having the immunotherapy available to us was by far easier, less taxing.

It was easier on Cole’s body. It was a relief to have another option beyond chemotherapy. Overall, it took a shorter period of time and was a less invasive treatment.

CRI: What would you want another patient to know about immunotherapy or about participating in a clinical trial?
Cole: I would probably let them know that everything will be okay. There will be hard times, but you’ll get through them. Everything will be fine. You’ll get back to normal. It might be scary sometimes, but if you’re confident that you’ll get through it, you can do it.