In a heartbreaking tragedy, parents Will and Natalie Decker lost both of their twin boys to the same type of cancer just 18 months apart. The Decker’s son 3-year-old Joel passed away in November 2017 from acute myeloid leukemia. His twin brother, Seth, passed away in May 2019.
Before the boys were diagnosed with the rare cancer, Will and Natalie “enjoyed every minute of having three boys in the house,” they told People. “We just had fun together.”
“Joel was outgoing and a little mischievous. And Seth was a little bit more quiet and sensitive,” she continued. “They were always together, and they had a very strong and close bond.”
Mom and Dad Talk About Losing Their Twin Sons to the Same Type of Cancer Within Just 18 Months of Each Other
In 2016, when Seth was just two years old, Natalie noticed small purple bumps on his torso. A doctor assessed him and told her the rash could be petechiae, a potential sign of low platelets. Blood work later confirmed Seth’s diagnosis.
A little while later, the Deckers saw the same purple dots on Joel’s body. Both boys began seeing a hematologist to be regularly treated and raise their platelet levels, but the boys still weren’t feeling well.
“I could tell something was wrong throughout that fall…[Seth] couldn’t walk. He was having so much pain,” Natalie told People.
In November 2016, Seth was diagnosed with myeloid sarcoma, a rare form of acute myeloid leukemia. According to the American Cancer Society, the disease typically begins in the bone marrow and then moves into the blood.
“We had already known that it was very likely that Joel was going to get sick,” Will told People. “For us, it was kind of a matter of not if, but when.” Having a brother or sister with leukemia raises the sibling’s risk of having it as well, the American Cancer Society reports.
In March 2017, Joel was diagnosed with myeloid sarcoma as well. Will and Natalie had been working on getting Joel a bone marrow transplant before his diagnosis, but the timing didn’t work out.
At the same time, Seth was undergoing a bone marrow transplant of his own, as well as chemotherapy. With both boys being diagnosed, Will and Natalie split caring for them while Natalie’s mom stepped in to care for their older child.
“We switch back and forth a little bit for breaks, but it’s too hard to do it,” Natalie said. “We couldn’t split 50/50 because you miss too much of what’s going on with either Seth’s care or Joel’s care. There’s not enough continuity if we’re just bouncing back and forth.”
For nearly a year, both boys were hospitalized for extended periods of time, being treated one floor apart at the same hospital. Yet, despite all their hardships, the young boys never let cancer get them down.
“They were just so strong and brave during everything,” Natalie told People. “No matter how much pain they were in or how bad they felt, they just had such great attitudes about it. They smiled every day.”
Unfortunately, Joel relapsed in June 2017. “It was just a struggle to try and get him comfortable and do what we could to try and stop the leukemia,” Natalie explained to People. “We just didn’t have a lot of options at that point.”
In November, after a short stay in the ICU, Joel passed away. Seth continued to show improvement, however, becoming “more and more active and returning to closer to what a normal child would be.”
In November 2018, tests revealed that Seth would need another bone marrow transplant. His older brother, Nathaniel, was a perfect match. However, it didn’t go as well as the first time, causing several complications.
By April 2019, Seth’s cancer had returned. Will and Natalie chose to take Seth home for the remainder of his life so he could be surrounded by family. “We knew as fast as everything had happened with Joel, we wanted to spend as much time at home together,” Natalie said.
Unfortunately, with his health going downhill quickly, Seth returned to the hospital and passed away on May 10, 2019.
In honor of their sons’ memories, Natalie and Will have partnered with the St. Baldrick’s Foundation to raise awareness and money for childhood cancers. You can donate to the family’s fund below.
“Seth and Joel didn’t focus on their limitations,” Natalie told People. “They just found joy in the little things around them that made them happy. Will, Nathaniel, and I want to try and live our lives that way.”
“So many people get stuck on things that, to us, seem insignificant,” she continued. “Sometimes we laugh if we hear someone complaining about something because Seth and Joel went through so much more and they had such a better attitude. We think about things a lot differently than most other families do. I feel like it’s really changed our perspective.”
When I’m not hanging out with my three-year-old and husband in Brooklyn, I’m busy writing stories for Mamas Uncut and managing PR + Marketing for Magnolia Bakery, based in New York City. On weekends, you can usually find me at a local park or playground pushing my daughter on the swings, “researching” the best almond croissants in Park Slope or launching into impromptu family dance parties at home, the sidewalk or, every once in awhile, a restaurant bathroom. I’m still trying to master the whole parenting thing, but I have learned that copious amounts of coffee, humor and humility are involved on a daily basis.
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