Parents Lose Their 'Loving' Twin Toddlers to Cancer 18 Months Apart: 'They Were Just Amazing'
Just 4% of federal government cancer research funding is for pediatric cancer. Will and Natalie Decker are opening up to help change that.
No parent should ever have to bury their own child, but Will and Natalie Decker have endured that painful experience twice already — and within 18 months apart.
From the time the Deckers expanded their family in 2014, life had been “wonderful chaos,” Natalie, 39, tells PEOPLE. That year, she and husband Will, 44, welcomed identical twin boys, Seth and Joel, who joined big brother Nathaniel, almost 5.
“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.”
But life as they knew it was quickly flipped upside down in December 2016, when Seth was diagnosed with a rare form of acute myeloid leukemia. Three months later, doctors delivered even more devastating 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 the mother of three that it was petechiae, which could be a sign of low platelets.
Blood work confirmed the pediatrician’s suspicions, so Seth started seeing a hematologist. Not long after, she and Will realized that Joel also had petechiae on his body, leading to him joining his brother at the hematologist.
In the months following that day, Natalie says Seth’s health was noticeably declining with no clear answers, much to her and Will’s concern.
“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.
Doctors later confirmed that Seth had AML, a type of cancer where the bone marrow makes an abnormally large number of blood cells, according to the National Cancer Institute. Research by the NCI has shown that having a brother or sister with leukemia, especially a twin, increases the chance of being diagnosed with the disease.
With this in mind, Seth started to undergo treatment with his mother by his side, while the Deckers had genetic testing done to see if Joel was also likely 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.”
At the time of Seth’s diagnosis, Joel appeared to be behaving normally and was showing no signs of illness, aside from his low platelets. But all of that changed in March 2017, when Joel started feeling unwell.
“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 soon confirmed the worst: Joel also had leukemia cells in his bone marrow — a diagnosis Will says they tried to prevent 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.”
The heartbreaking news also came as his twin brother was receiving high-dose chemotherapy and preparing to get a bone marrow transplant, Natalie explains. Doctors told her that if things went well, Seth would finally be able to go home.
“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.”
With no other choice, the parents put on a brave face and split up in the hospital, each staying with a twin — Natalie with Seth and Will with Joel. Meanwhile, Nathaniel was back at their Webster home being cared for by Natalie’s mom, who moved in with the Deckers following Seth’s diagnosis.
To make things more difficult, Will and Natalie rarely ever switched caretaker roles and often spent weeks at a time away from each other, separated by just one hospital floor. (Seth was on the bone marrow floor, Joel was on the cancer floor.)
“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.”
Despite the severity of the disease they were battling, Natalie says the boys remained positive and tended to view their situations as normal.
“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 finally returned home, a month after his transplant. Joel, who had just finished his first chemo round, also came home that month. He stayed until May, where he began his second round of chemo and then underwent a bone marrow transplant in June 2017.
By August, however, Joel’s health started to severely decline and he 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 spent the last two weeks of his life in the ICU before his parents spoke to doctors and felt comfortable enough to pull him off the respirator.
On that heartbreaking day, the extended family was called to the hospital and Joel was moved to a private room so he was comfortable in his final moments. A child life specialist was also there and broke 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.”
Seth, meanwhile, refused to go into the ICU — terrified of the ventilator and noise — and even had trouble being in the private room, according to his mother.
“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.”
About an hour and a half after taking Joel off the respirators, he died at age 3 on Nov. 1, 2017.
Devastated, the Deckers say they were also terrified of the uncertainty of Seth’s future. Still, they had to move forward and stay strong for their two sons.
“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 and he appeared to be getting better.
“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 just as quickly as it went upwards, Seth’s health started declining. After multiple tests and biopsies, doctors determined that he needed a second transplant in November 2018, given to him by his perfect match, big brother Nathaniel.
However, the second transplant brought multiple complications for Seth, including graft versus host disease, when the new bone marrow attacks the host. By April 2019, Will and Natalie learned that their son’s cancer had relapsed.
At that point, the Deckers opted to take Seth home, with Natalie noting that “we knew as fast as everything had happened with Joel, we wanted to spend as much time at home together.”
Like his twin brother, Seth’s condition also quickly worsened and the Deckers were forced to bring him back to the hospital. This time, they stayed in a regular room by the 4-year-old boy’s side until he died peacefully on May 10, 2019.
The death of their second child hit even harder for the Deckers, who said they had more time together to think about the shocking loss.
“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.”
Today, the Deckers focus their efforts on St. Baldrick’s Foundation, where they have been helping raise awareness and funds for childhood cancer — an area Will believes is highly “underserved,” especially ahead of International Childhood Cancer Day on Feb. 15.
“A number you hear a lot is 4% of the NIH, National Institutes of Health Funding, goes to childhood cancer. The rest of it goes to adult cancer funding,” Will says. “We wanted to do something to help make things better for other kids.”
“It’s bittersweet,” Natalie says of the roles. “I think it makes us feel good to see them acknowledged… We’re so proud of them and to help keep their memory alive, it makes us so happy.”
“I just feel like they were such loving, wonderful little boys,” she continues. “I mean, even feeling horrible and all they had to endure, they just wanted a hug from us and kisses, and they smiled even when they didn’t feel well. They were just amazing.”
Adds Will: “We think about them all the time anyway… And this gives us a chance to share their personalities and things they like, in addition to raising awareness for research.”
As difficult as this experience has been for the Deckers, Natalie says they’ve found a principle to live by amid the unimaginable losses.
“Seth and Joel didn’t focus on their limitations. They just found joy in the little things around them that made them happy,” Natalie explains. “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 continues. “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.”
Those interested in helping the Deckers with their mission to fund childhood cancer research can donate to their hero fund, Double Deckers Destroy AML, here or on the St. Baldrick’s Foundation website.
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This article originally appeared on People.com