Will and Natalie Decker were a happy family as they welcomed identical twin boys, Seth and Joel, who joined big brother Nathaniel.
Their life had been “wonderful chaos,” but everything changed and their lives quickly flipped upside down in December 2016.
“It was very busy and hectic,” Natalie says of their life over the next two years. “We enjoyed every minute of having three boys in the house, and the laughter and the noise, and how much they loved each other, and we just had fun together.”
“Joel was outgoing and a little bit mischievous and Seth was a little bit more quiet and sensitive,” she adds. “They were always together and they had a very strong and close bond.”
They were upset when Seth was diagnosed with a rare form of acute myeloid leukemia. Three months later, doctors delivered even more sad news: Joel also had AML.
“It was pretty traumatic. I had a hard time just processing that Joel had cancer also,” Natalie recalls. “It was a terrible time… it took several days to fully sink in that it had really happened.”
The boys had just turned 2 when Natalie noticed “small purple dots all over Seth’s torso.” The pediatrician told her it was petechiae, which could be a sign of low platelets.
“Seth just wasn’t feeling well. I could tell something was wrong throughout that fall… He couldn’t walk. He was having so much pain,” Natalie recalls, adding that it wasn’t until November 2016 that their pediatrician became almost certain that Seth had a cancer tumor.
Later, Doctors confirmed that Seth had AML which is a type of cancer where the bone marrow makes an abnormally large number of blood cells, according to the National Cancer Institute.
Seth underwent treatment with his mother by his side, while the Deckers had genetic testing done to see if Joel was also required to be diagnosed.
“We had already known that it was very likely that Joel was going to get sick,” Will explains to PEOPLE. “For us, it was kind of a matter of not if, but when.”
“Seth and I had been in the hospital for months and Joel was going up to Texas Children’s Hospital once a week to get platelets, so it was hard to tell if he was upset from the stress of everything,” Natalie explains. “But finally I was like, ‘He’s in pain. I don’t think he’s feeling well.
A bone marrow biopsy shortly confirmed Joel also had leukemia cells in his bone marrow. Will says they tried to stop by getting him a bone marrow transplant “before he got sick, but we couldn’t get things lined up in time for it to work out that way.”
“We had kind of been working towards this — [that] we might all be home together,” she explains. “And then when Joel was diagnosed, we had to start all over… Having a second child diagnosed with cancer was really devastating and I felt bad that I couldn’t be there with both of them.”
The parents had no choice and they had to split up in the hospital, Natalie stayed with Seth and Will with Joel.
“We switched back and forth a little bit for breaks, but it’s too hard to do it,” Natalie says.
“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. ”
‘’They were just so strong and brave during everything,” she says. “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.”
“I don’t think they understood the extent of what was happening,” she adds. “To them, it just became kind of their normal life. Like they just knew, ‘I have to.’”
In April 2017, Seth was returned home, a month after his transplant. Joel, who had just finished his first chemo round, also came back home the same month. He started his second round of chemo and then underwent a bone marrow transplant in June 2017.
By August, Joel was readmitted for a relapse. “It was just a struggle to try and get him comfortable and do what we could to try and stop the leukemia,” Natalie explains. “We just didn’t have a lot of options at that point.”
“He started to put on water weight and get heavier and less mobile,” recalls Will. “Basically he got too much fluid in his system that he had to go to ICU.”
Joel was moved to a private room and the extended family was called to the hospital to be with him in his final moments. A child life specialist was also there and told the news to Nathaniel that Joel was about to die.
“He started crying, but after that… Nathaniel was amazing,” Natalie says. “He sat in the bed and he stroked Joel’s hand and head and talked to him… he just loved on Joel, the little bit [of time] that we had with him.”
“Joel was very peaceful,” she adds. “We were able to hold him and talk to him. He, at least, looked very comfortable. So I think that made it easier.”
Natalie said that Seth rejected to go into the ICU as he was terrified of the ventilator and noise, he even had trouble being in the private room.
“He was there, but he did not want to come in the room,” Natalie explains. “I think he sensed something was happening but was not able to understand all of it.”
On November 1, 2017, about an hour and a half after taking Joel off the respirators, he died.
“Honestly, I don’t know [how we did it],” Natalie says. “I guess God just kept us moving because we just kept going forward. We knew that we had to and you just put one foot in front of the other and do the best that you can.”
“You really don’t have a choice because you can’t just fall apart and not take care of your family,” adds Will.
After Joel’s death, Will says Seth’s blood count numbers were improving. “He was getting more and more active and returning to closer to what a normal child would be,” he explains. Natalie adds that he was able to go for walks, visit the zoo, and play with Nathaniel.
But suddenly Seth’s health started declining. In November 2018, doctors that he needed a second transplant after multiple tests and biopsies.
The second transplant caused multiple complications for Seth, including graft versus host disease, when the new bone marrow attacks the person.
Natalie said that “we knew as fast as everything had happened with Joel, we wanted to spend as much time at home together.”
Seth’s condition quickly worsened and he was brought back to the hospital. Will and Natalie stayed in a regular room by the 4-year-old boy’s side until he died on May 10, 2019.
“After Joel, we had to put a lot of effort into taking care of Seth,” Will explains. “But after Seth died, all that extra work went away. We had, what felt like, a lot more time on our hands, so that made it probably even more difficult.”
“With Will and Nathaniel and I all grieving together and being around each other, it was just hard,” Natalie adds, noting that Nathaniel, now 10, even felt a sense of guilt because the bone marrow he donated to his brother didn’t work.
“We just try to take it a day at a time,” she says. “Some days we do okay and sometimes we have bad days.”
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