Diagnosed With Cancer Twice, 13-Year-Old Continues Courageous Fight
March 01, 2018 - CBS DFW
Katie Thomson is one of so many, who have been diagnosed, and fought, only to be told the monster is back. Not once, but twice. I would give anyone in that situation the right to be mad, angry, upset, and vocal about it. But I have to tell you, meeting Katie was pure inspiration. At 13, nearly 3 years into her fight, this little girl has the heart, soul, and composure that far exceeds her years. The connection I have to Katie is one that goes far beyond simply caring so much about helping those in the fight against cancer though. The backstory on why is important.
Two years ago, I completed the hardest one day race on the planet, the Ironman Triathlon World Championship, all to raise money to help support research for people just like Katie. What I didn’t know then, was the direct impact our fundraising for the Leukemia and Lymphoma Society that year would have.
At that time, late 2016, a therapy called CAR-T was an immunotherapy *thought. In clinical trials to see if it could actually benefit those in the fight. CAR-T works like this. A blood draw is made. It is then sent to a lab in New Jersey where the T cells are removed. Each T cell is then married to a genetically engineered cancer fighting cell that once put back in the body, will multiply, and also directly attack Acute Lymphoblastic Leukemia, Katie’s leukemia. Using your own body, with a genetic modifier, to fight that evil in your body. Part of the nearly $160,000 we raised for LLS that year, helped fund the research (much of it taking place at UT Southwestern), that finally led to FDA approval last in 2017 of that very therapy!
That brings us to Katie. Diagnosed in 2015 with A.L.L., the initial chemo didn’t work. Then she moved on to a bone marrow transplant. It worked. Katie got back to her life. Her school. Her friends and family. Life began to be fun.
But by October of 2017, Katie didn’t feel right. She told me she knew that feeling. She even held back from telling her mom and dad for a bit, she didn’t want them to hurt, and she was hoping it just wasn’t true. But it was. Her cancer was back. But not long prior to her relapse last year, CAR-T therapy, a hope and dream just two years ago, was finally approved by the FDA. The timing of it all is not lost on her family. Requirements to qualify for CAR-T therapy is anyone under the age of 25, who has relapsed twice.
Katie received her blood draw in early December 2017. About a month later, the blood came back from the lab. Katie was given her now genetically modified T cells in an infusion that happened on January 6th 2018. Right away, she spiked an incredible fever. She felt horrible. Her fever spiked to 106 degrees. As you read that, you expect the worst. But this was the best news doctors had hoped for actually. It was an immediate indication that the new fighter T cells were working. They were multiplying in her body by the thousands, war was being waged against that demon in her body, and they began eating up her A.L.L cancer. It was working.
Katie told me about that day, saying “It was kind of hard to believe, because I felt so bad. But somewhere in the back of my mind I was like, happy, that they were dying”.
And indeed she was right. Those cancer cells were dying. But the road had already been long and hard. Chemo fights. A bone marrow transplant in 2015 when the initial chemo didn’t work. Katie’s mom Jessica remembers “all you can think of is that it’s just not fair for your baby to have to go through this all over again, and your heart breaks because you can’t fix it, you can’t make it go away.”
To me, that frustration is so easy to understand as a parent. I can’t imagine being powerless to help my child myself. But the reality that so many parents of kids with cancer deal with.
In cancer, the hope with every major treatment, from chemo, to this new CAR-T, is to have the patient in “remission” by four weeks after treatment. Remission is not cured, but it’s an indication that the cancer is no longer anywhere in your body, so the fight continues as planned. At week four after her infusion of the new cancer fighting blood, Katie, was in remission.
Her oncologist Dr. Ted Laetsch of Children’s Health Dallas and UT Southwestern, also, just happened to be on part of the history making team that directed many of the clinical trials of CAR-T therapy, where he told me they saw an amazing 81 percent success rate. If this match was not made in Heaven, I don’t know what else it could be. Dr. Laetsch told me when we sat down, that “it’s kids like Katie who get me through.” As a researcher who had a major hand in developing the now FDA approved therapy in Katie’s body, doctor Laetsch says he’s extraordinarily happy to “see a great response as in Katie’s case, and we’re able to help, where five or ten years ago, we weren’t.”
As you read this, Katie is cancer free. Still fighting, still a road ahead to make sure this ugly monster never returns. With CAR-T the body lacks antibodies. So as a result, Katie drops by Children’s on a routine schedule to receive antibodies through an IV that she will now need to do for life. A small price to pay says mom, for the life we’re all desperately hoping she will return to.
She’s already taking the first steps. In the last two weeks, Katie has returned to school. She’s returned to dance class, one of her first loves. She’s returned, to being a kid again.
Just as I did two years ago in Kona, I will return to the big Island on March 25th to continue my support and fight for people just like Katie. I’m taking on the Lavaman triathlon in Kona, on March 25th. Raising money, and with stories like this, awareness. Every single dollar I raise through my fundraising page, goes directly to the Leukemia and Lymphoma society, and I would be honored to have your support. I know Katie, and every other cancer warrior out there now, and those who will be diagnosed, will appreciate anything you can do.
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