T-Cell Therapy Patient Story: Colton Matter

At age nine, Colton Matter crashed while jumping his scooter over a bike ramp. His elbow was bleeding, and he had terrible pain in his hip that he couldn’t shake. His elbow got better. The pain in his hip didn’t. Physical therapy didn’t help, and even with crutches to keep the weight off his leg, he didn’t seem to be improving. About a month later, he was diagnosed with hypo-diploid acute lymphoblastic leukemia.

After four years, three relapses, two bone marrow transplants, and one stem cell transplant, Colton traveled from his home in Seattle to join the CAR-T cell trial at Children’s Hospital of Philadelphia in 2013. He received a second infusion of his cells in early 2014. While his path to long-term remission hasn’t been completely clear-cut, Colton has been cancer-free since early 2015.

In their own words, Colton and his mother Suzy share the story of his diagnosis, treatment, and growing up after CAR-T cell therapy. 

Colton has been worried about SAT scores and getting into college – and for that, he is truly grateful.

“I am thankful for ‘normal’ worries that life brings,” he says. When you have lived with leukemia for the last eight years, it’s fair to say that you can take more routine sources of stress with a big grain of salt.

When Colton was first diagnosed, our family was in shock. He had always been so healthy, and very focused on sports. He played basketball, soccer, and baseball. People would say, “I bet he will play for the Mariners.”He was off the charts for being big and tall and strong. Never would we have imagined anything like this would happen to him or anyone in our family.

Very quickly, Colton’s doctors in Seattle realized that his CD19 hypo-diploid leukemia would be hard to treat. We tried transplant after transplant, and he kept relapsing.

“I remember when I relapsed for the fourth time,” Colton says. “My doctor told me that there was nothing more that he could do. It’s hard to describe what hearing those words feels like, and the silence that follows.”

“Thankfully, he followed up with, ‘Unless you want to consider a clinical trial they are doing in Philadelphia?’ My mom told him that we would go to the moon if we had to!”

Colton’s CAR-T cell experience has been somewhat unusual. He received two infusions of his cells, undergoing the second infusion after his care team wasn’t sure about the effects of the first one. Then, a few months after the second infusion, Colton relapsed again. We were in this fight again, for the fifth time in five years.

But after the CAR-T cell infusions, Colton’s cancer had come back differently. He now had CD22 leukemia, not CD19. And there was no sign of his cancer being hypo-diploid anymore. So his doctors decided to go for “big guns” chemo against the CD22, and then follow up with a more standard type of chemo.

And it has worked! In early 2015, about six months after Colton’s fifth relapse, we learned that his bone marrow was cancer-free. Colton has been in remission since. He underwent his last rounds of treatment the week before the Believe Ball.

We are grateful for so many things. We can’t even begin to thank all the people who have helped us, or prayed for Colton, or the doctors who have worked so hard to save Colton. I donate my time to help Seattle Children’s Hospital, which stepped in to cover the costs of a transplant when our insurance company said “No.” We are thankful for our faith. We are thankful that God has truly prepared us for “today,” together as a family. We each feel we have been prepared through our life experiences to face this life challenge together. This will make us stronger.

And I am thankful for Colton, and his incredible resilience. He always knows that it’s “Mind over matter.” For example, if someone told him that for a certain chemo to work, he would have to let it flow through his body, then he would be the king of drinking water to help that happen. It’s a lot of believing, and what your mental state is. Do you believe you are going to be here next year? You have to believe it.

I’ll let Colton close this out: “If I believed in statistics or even listened to them, I’m sure they would say that I should have died by now. But I chose and continue to choose hope, and to choose faith, and to keep putting one foot in front of the other, even when the world around me seems bleak.”

“Eight years ago, when cancer so rudely interrupted my life, I told myself that I wouldn’t let cancer win. Thankfully, I am here today to tell you that it hasn’t.”

We’re making it our mission to change the standard treatment narrative for all kids fighting childhood cancer. We want a different journey for these heroes – one with less toxic treatments and without fear of relapse, or loss of life. We need to write a better story for children fighting cancer!

Learn more at www.WriteABetterStory.org.

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By | 2018-05-10T14:36:08+00:00 November 7th, 2017|Patient Stories|0 Comments

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