“Joel was outgoing and a little bit mischievous and Seth was a little bit more quiet and sensitive. They were always together and they had a very strong and close bond.” (1)
That’s mom Natalie Decker, talking about her sweet twin boys who left this earth far too soon. It’s always so hard to fathom the idea of a parent having to say goodbye to their child…that’s not how it’s supposed to work at all. But it did happen to Will and Natalie Decker. Not once, but twice. In November of 2017, three-year-old Joel was the first to succumb to Acute Myeloid Leukemia (AML). A mere 18 months later, his identical twin brother met the same fate. Young Seth left this earth in May of 2019. The Deckers are hoping that by sharing the story of their boys’ battle with AML, a rare childhood cancer, that they can raise awareness among parents. With more eyes on this tragic story, perhaps an unexpected silver lining could arise from the heartbreak. This is a complex disease that needs a lot more research, and thus it needs a lot more funding too. Perhaps the Deckers can help other parents to identify the warning signs, and even a cure could be out there on the horizon.
Little Warriors: Twin Toddlers Joel and Seth
In 2016, the boys had just turned 2 years old. Healthwise, all seemed great except for a rash of “small purple dots” that Natalie noticed on Seth’s torso. Their long and arduous journey would begin when she took him to the pediatrician. She was told that Seth’s rash could be a “petechiae”, a sign of low blood platelets. Tests came back that confirmed the doctor’s suspicions, and Seth began seeing a hematologist. But it wouldn’t be long before the rash appeared on Joel too. In the following months the boys’ condition declined rapidly as their helpless parents did everything they could to slow the progress.
It was later that year, in November 2016, when Seth’s pediatrician began to suspect a tumor. He wasn’t too far off the mark. It was determined that he had myeloid sarcoma, which is a rare form of AML. This is a cancer of the blood cells that affects everything from red blood cells, platelet-forming cells, and some white blood cells too, according to the St. Baldrick’s Foundation, a fundraising community for research into childhood cancers. (1)
Joel and Seth Decker
More Research, More Funding Needed
The National Cancer Institute’s research suggests that having a brother or sister with cancer, especially a twin, heightens a person’s risk. (2) So prior to Joel’s diagnosis, the Deckers had a suspicion of what was to come. That certainly didn’t make it any easier for them. They did everything possible to save Joel from the same diagnosis as his brother. They even tried to coordinate a bone marrow transplant when he was still healthy, to try and get ahead of the disease. But it didn’t happen in time. Joel began to fall ill and tests confirmed he had leukemia in his marrow, and both boys began their fight in earnest.
And fight they did, but rounds of chemo and extended hospital stays ultimately did not topple the cancerous Goliath. So what are parents to do, when finding themselves in that vacuum of stillness after such a heartbreaking time? The Deckers decided to partner with St. Baldrick’s Foundation. They want to share the story of their sweet twin toddlers with the world, so a light can be shone on this devastating childhood cancer. So other parents don’t have to go through the heartbreak they did.
“We just had fun together,” Natalie said of her boys. (1)
Learn more about Joel and Seth, and their brave fight by clicking here.
