A Devastated Couple Opened Up About Their Little Girl Dying Before She Knew She’d Be A Big Sister

The Sooter family had gone through the unthinkable – their daughter, Addy, passed away from cancer at just four years old. Three weeks after that, they found out they were having another baby. Parents-to-be Matt and Chandra opened up about how they were dealing with such simultaneous heartbreak and joy. And they described how they thought Addy would’ve reacted to becoming a big sister.

According to Matt Sooter, he and his wife, Chandra, always dreamed of having three children. And he told Love What Matters, “In the summer of 2016, we were two-thirds of the way to fulfilling that plan. We had a four-year-old little boy and a two-year-old little girl.”

So, Matt recalled, he and Chandra began figuring out the logistics of adding a third child into the mix. This would be a new sibling for their son, Jackson, and their daughter, Adalynn, whom they called Addy. “We… decided the fall or early winter would be good for timing things with Chandra’s work schedule since she is a teacher,” Matt said.

Unfortunately, life had other plans for the Sooter family. About when they had imagined they’d be trying for baby number three, Matt and Chandra began to notice problems. Addy had trouble with walking and with her coordination, tendencies that intensified over the course of a month.

Matt told People, “We were confused, but we thought it could be because of the growth spurt she had just gone through. As it got worse, we became more and more concerned.” But their worry could not have prepared them for the diagnosis that doctors eventually handed down to Addy, then 2, in November of 2016.

Addy had diffuse intrinsic pontine glioma (DIPG), a rare and aggressive cancerous tumor growing on her brain stem. The diagnosis came with a less-than-one-percent survival rate. Understandably, “life, and all other plans, immediately went on pause” for the Sooters, Matt told Love What Matters.

Indeed, doctors told the Sooters that Addy had only months to live. But neither she nor her parents took that prognosis sitting down. Instead, Addy embarked on eight months of treatment, which successfully stalled the growth of her tumor. But in July of 2017, the family found out that the cancer had begun to progress once again.

So the Sooters regrouped and enrolled Addy in experimental cancer treatment that they had found in Mexico. Again, “Treatment was successful for a time, but eventually [the] effectiveness wore off and we discovered Addy was once again in progression and the cancer had even spread down her spine,” Matt said.

In May of 2018, Matt acknowledged Addy’s incredible fight, but admitted that it was coming to a close. He told People, “The fact that she’s survived over 18 months now is purely incredible… While we’re doing everything we can to change the outcome, we don’t expect to win this fight. We haven’t given it up, but it seems we are losing the war.”

Around the same time, Matt and Chandra began to consider having the third baby they had always wanted. “The idea of a baby, not as a replacement for our little girl, but as a way to bring joy into her life, came back into the picture,” he told Love What Matters.

They were especially drawn to the idea because Addy herself had become “enthralled” with a Sooter family friend who was pregnant. Matt said he felt that being a big sister “would bring so much joy to Addy… We knew we didn’t have much time left with her, but our hope was that we would have her long enough to be able to tell her she was going to be a big sister.”

But that was never to be. On June 2, 2018, Matt shared a heartbreaking photo of his son, Jackson, tending to an ailing Addy in her hospital bed, her fight against cancer nearing its end. “A little boy should not have to say goodbye to his partner in crime, his playmate, his best friend, his little sister. This isn’t how it’s supposed to be,” Matt wrote on Facebook.

In the same post, Matt revealed that Addy could “no longer eat or swallow without difficulty” and that she was “sleeping most of the time now.” He wrote that the Sooters knew that “she [didn’t] have much time left.” Consequently, he implored loved ones who wanted to say goodbye to contact the family as soon as possible.

In the early hours of June 3 – one day after Matt posted the photo of his children at the hospital – Addy “passed from this life to the next just as she had lived: stubbornly but also peacefully, and surrounded by family. She wasn’t in any pain at the end,” Matt wrote on Facebook.

Matt signed off on that post on a positive note, writing, “Always remember, God is in this situation. He’s up to something, and he’s up to something good.” It was a bit of foreshadowing for the Sooters, who found out three weeks after losing Addy that they were expecting their third child.

Of course, dealing with both floods of emotion was difficult, Matt told Love What Matters. “We look forward with great anticipation to meeting our new addition! At the same time, we feel sorry for this new one because it seems we are not the same parents, the same people, that our sweet Addy knew,” he said.

Matt went on to say, “We are sorry this child will never know their sister except for the pictures, videos, and stories we share of her. However, we are so excited to have this new little one and look forward to watching them grow up and blossom into the person God intends for them to be. We love our baby so much already; just as we love our Jackson and our Addy.”

Matt and Chandra announced their new-baby joy on Facebook, and the image the shared included a nod to all three of their children. It featured a pair of each child’s shoes, as well as a sonogram next to the baby’s booties.

As for their eldest son, Jackson, Matt told People that he was “excited about the baby,” but still trying to deal with the loss of his sister. “He’s resilient, but we’ve kept him on the go. He’s had to make a big adjustment to not having his constant play buddy with him,” he added.

To that end, Matt was sure that Addy would’ve made “the best big sister” because “she was so caring and such a big helper any time she [was] around anyone with a baby.” And yet, he reported that he and his wife felt “at peace” with her absence. “We miss her terribly, but […] it was only, ‘See you later.’ We’ll see her again someday,” he said.