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On Friday, February 24, Dustin Arnold and Nicole Anderson made the most difficult decision of their lives.
Kylie’s last weeks were painful, yet peaceful. Dustin decided not to return to work, and the family took a trip to Key Lime Cove in Gurnee. Kylie’s facial paralysis had progressed to the point where Dustin and Nicole had to help her drink through a straw. And her ability to speak kept deteriorating.
“She was such an independent child, and this was so frustrating for her,” Nicole said. “We would do our best to hear what she had to say, but even us, we couldn’t decipher it always. She talked in hand signs. But when she couldn’t talk properly, she gave up.”
Dustin remembers their second day at Key Lime Cove, in what would be the last week of Kylie’s life. Despite feeling weak, she wanted to play in the pool. And when the wave pool proved too cold for her, the staff let Dustin bring her into the adults-only hot tub.
They could only stay in for a few minutes at a time, until the temperature got too overwhelming. But the last time they were in, Kylie asked to swim. The previous year, she had been an avid swimmer at the Civic Center pool in Boulder Hill, but now she couldn’t do it without help.
“I got to hold her and be with her, and be her dad,” Dustin said. “It was one of the last times we got to do something fun.”
On the ride home, Kylie seemed more alert and talkative. On Thursday the 23rd, the family tried feeding her through a tube. This also, they realized, would allow them to give her the chemo drugs without her tasting them. Kylie took the food and the drugs for 12 hours.
But on Friday morning, she woke up sick. She was weak, she was blue around her lips and fingertips. Dustin and Nicole called 911, and an ambulance took Kylie to Rush-Copley in Aurora. And they texted Dr. Natalie, who came running.
And that afternoon, it was Natalie who delivered the news to them: Kylie had pneumonia, and she was not expected to survive it.
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“We sat and talked,” Dr. Natalie said.
“Nicole was more involved with the intricacies of Kylie’s care, so she knew the time had come. She was more prepared. As for Dustin, it’s not in anyone’s nature, especially a dad, to give up. Parents should never have to bury their child. So we prayed about it.”
The choice was a deceptively simple one. They could admit Kylie to the hospital, intubate her and give her antibiotics, knowing that she might never come home. Or, they could bring her home right then, and make her final days comfortable ones.
“We spent a lot of time talking and praying about it,” Natalie said. “They decided it was important to take her home.”
In her 11 years with Dreyer Medical Clinic, Natalie said, she has seen many parents make similar decisions. None of them are easy, she said. This one brought tears and pain, but everyone involved knew what Kylie would have chosen for herself, had she been able.
“We agreed not to spend her last days in a hospital,” Dustin said. “It’s not what she would have wanted. So we took her home.”
They arrived back at the house, the family and Dr. Natalie and Sheila, Kylie’s in-home nurse. And Dustin and Nicole started calling people, to let them know that if they wanted to see Kylie one last time, they should come sooner rather than later.
One by one, they arrived, Dustin’s mother even making a 10-hour car trip to get there. By Friday night, Kylie was surrounded by family and friends.
She spent most of Saturday just quietly trying to live. She sat on the couch in the main room, while family members doted on her, but she wasn’t fully conscious, and she didn’t communicate. At one point, a woman Dustin and Nicole had met while seeking out alternative treatments came to the house to pray over Kylie.
“When she was done with the session, we talked, and she was very positive and uplifting,” Dustin said. “I credit her for the things she said. I was in a bad state of mind that morning, but that was exactly what we needed to hear. It helped us get through that day.”
“That was a day that could have made or broken our family,” he said. “But we thought, ‘We have a plan again. We will hope and pray and maybe she will come through.’”
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Dustin and Nicole did get to see their daughter, as she once was, one last time.
Nicole’s brother Ryan, whom she described as a very spiritual person, sat by Kylie on Saturday night. He rubbed her head, and without warning, she woke up. For about 15 minutes, Nicole said, she was alert, and communicating again.
“We asked if she wanted us to rub her head, and she said yes,” Nicole said. “I asked if she wanted to paint her nails. That was something special between us. She loved to paint.”
And paint they did. Everyone else in the house was tired, and had gone elsewhere. So for about 15 minutes, Kylie and her parents got to spend one last moment of clarity together.
“She looked like Kylie,” Dustin said. “His touch brought her around. We saw Kylie.”
But the moment ended, and Kylie slipped into a semi-coma. She had a coughing fit that night, vomiting a little, and Dustin and Nicole thought she might go right then and there.
“It became so super real to me,” Nicole said. “I was the strong person when it comes to her care, but it felt like it hit me. You will never be prepared or understand what that feeling will be until it happens.”
Instead, the formerly feisty girl chose to go much more quietly. As she lay on the couch, her family around her, her breathing simply slowed. Mom held one hand, and dad held the other. Kylie took a breath once every three seconds. Then every five seconds. Then ten.
“We called Devin in and all held her together,” Dustin said. “Until her last breath. We could still hear her heartbeat for a while, and then it stopped. We held her as a family until Jesus came and took her hand and walked her to Heaven.
“And we held her for an hour and a half after that.”
Part five of The Life of Kylie will post tomorrow at 6 a.m.