For hours, Matt Sooter had been watching his two young children talk and play.
Maybe the conversation was about Queen Elsa or plastic Easter eggs — two topics his 4-year-old, Adalynn “Addy” Sooter, knew well. He doesn’t recall what the two were discussing that Saturday night at a hospice facility in Arkansas, where Addy lay dying after a long battle with Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor that starts in the brainstem.
But the father does remember the heart-wrenching moment that followed — when Addy’s 6-year-old brother, Jackson, told his younger sister good night for the last time.
Sooter, 29, said that Addy was tiring and that it was time for Jackson to head to sleep not far from his sister’s bedside. Jackson let his sister hold his hand, then he patted her forehead and said, “I love you.”
Sooter snapped a picture and posted it on Facebook on June 2 — capturing a heart-wrenching moment that has been shared across social media.
“A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister,” Sooter wrote in the post. “This isn’t how it’s supposed to be. But this is the broken world we live in.”
Sooter explained that his daughter’s symptoms were progressing quickly and urged family members and close friends to say their goodbyes.
He then asked for prayers for their family — specifically for Jackson.
“He doesn’t want to leave her side and we won’t make him,” he wrote.
Jackson knew that his sister had a tumor and that, if it kept growing, she would die. His father said that it made Jackson sad that his “sissy” would no longer be there but that he was glad “she was going to be with Jesus.”
Sooter said Tuesday in an interview with The Washington Post that about 20 minutes after Jackson tucked his sister in, her breathing changed — it became slower, more labored and more erratic. She opened her eyes a couple of times, but she was not coherent, Sooter said.
For the next several hours, Sooter and his wife, Chandra, sat on either side of their daughter’s bed. Then, just after 1 a.m. on June 3, Addy died.
They woke up Jackson about 4 a.m., deciding there was no reason to continue to stay at the hospice facility. It was time to go home, grieve and rest.
“We told Jackson that she had passed — that she was with Jesus and she wasn’t hurting anymore,” Sooter said. “He said ‘Goodbye, Sissy,’ and they went out to the car.”
Sooter posted a photo later that morning, showing Addy wearing a bright white sun hat.
“Our sweet little girl received the miraculous healing that we’ve all been praying for so long and ran into the arms of Jesus,” he wrote. “She 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.
“For those who were wishing to say goodbye I’m so sorry,” he added. “This all happened so much faster than we expected, but that in itself is a blessing because she suffered so little at the end.”
In 2016, the Sooters, from Rogers, Ark., noticed their daughter’s gait was a bit strange — she was swinging one of her legs instead of picking it up and planting it on the ground. The couple didn’t think much about it until her symptoms started to progress. The then-toddler soon started to lose coordination and motor function, her father said.
“She was still walking but only if she could hold your hand,” he said. “Otherwise, she would crawl.”
In November of that year, Addy was diagnosed with DIPG — a rare and incurable tumor that starts in the brain stem, which controls “breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat,” according to St. Jude Children’s Research Hospital. The hospital states that about 10 to 20 percent of pediatric brain tumors are DIPG.
For the next 19 months, Addy underwent 33 radiation treatments in Arkansas, then 10 experiential chemotherapy and immunotherapy treatments in Mexico to try to buy her more time, Sooter said.
But they also tried to enjoy the moments they had left with Addy — a Make-A-Wish vacation to Walt Disney World to meet her favorite “Frozen” queen and her first trip to the beach. Then, her father said, there were the little things that were on the 4-year-old’s “bucket list”: playing hide-and-seek and watching YouTube videos of people opening plastic Easter eggs and showing what was inside.
Eventually, the cancer spread to her spine. Her last week, the tumor in her back started pressing on the nerves in her spine, causing her pain, so her parents placed her in hospice care, Sooter said.
Following Addy’s death, her father said he and Chandra donated their daughter’s tumors to scientific research “in hopes of saving future children from a similar fate,” he wrote on Facebook. At Addy’s service Saturday in Rogers, her parents asked family members and friends to wear bright colors “or one of Addy’s favorite colors, pink, purple, or blue,” to celebrate her life.