The calendar reads April of 2012, but inside this Montgomery home, time has stopped.
Dustin Arnold and Nicole Anderson are sitting together on the couch in their main room. They’re tired, and they’re each relying on the other to be strong. Around them, on walls and bookshelves, the smiling face of their daughter, Kylie, peers out from photo frames. They’re memories of happier days, frozen in time.
The story they’re telling is not an easy one, and it’s marked by tears. While Nicole is talking, Dustin will reach out and grab her hand, or offer her a supportive squeeze on the arm. It’s only been a couple of weeks, after all, and they’re not used to talking about it.
On March 2, Dustin and Nicole did something no parents should ever have to – they buried their daughter. Kylie Arnold was only 4 years old when she succumbed to brain cancer and pneumonia, dying in the arms of her family at home. It was a long and difficult battle – she was 28 months old when she was diagnosed – and it’s been an impossibly hard task to let her go.
And now, Dustin, Nicole and their son Devin are learning how to be a family of three, instead of four. Dustin and Nicole have an easy rhythm when talking about it. They refer to each other as Mom and Dad, something only parents with young children would do. And though they squabble sometimes, the love between them is evident.
Nicole is an encyclopedia of medical terms – she was the one who spent the most time with Kylie in the hospitals as she was undergoing treatment, so she remembers dates and technical names well. Dustin wears his heart on his sleeve, and fills in the timeline with emotions and feelings. When one part of the story becomes too much for one of them to tell, the other picks it up.
In the end, try as they might to convey it, no one will understand how these two feel. No one will understand just how hard it is to lose a child, and to pick up the pieces afterward and carry on. But a few things become clear. Kylie Arnold was a special child, who touched an astounding number of lives in her short time here.
And though they will go on, and become stronger, her family will never forget her, and never stop loving her.
* * * * *
Kylie Elizabeth Arnold was born on May 3, 2007, and right from the start, Nicole said, she was their “complicated baby.” She was five weeks and five days premature, and when Nicole went to the hospital on May 3, she got stuck on an elevator on the third floor.
“I started to freak out,” she said. “I was eight months pregnant, six weeks early, I can’t have my baby, and I was like, get me out of here,” she said. She was freed from the elevator and immediately admitted for a c-section, she said.
Kylie weighed 5 pounds and 2 ounces – below the 5 pounds 8 ounces considered low birth weight, with increased risk for health problems. She was fine for two weeks, but then started aspirating, and making gurgling sounds. Exactly two weeks after she was born, she was diagnosed with laryngo-tracheomalacia – essentially, a collapsing airway.
She quickly had a form of surgery called supraglottoplasty, in which doctors basically reconstructed pieces of her airway. It was scary, Dustin and Nicole said, but Kylie came through it perfectly, and they were told that by the summer of 2009, when Kylie was two years old, she’d be completely out of the woods.
But an altogether different problem surfaced then.
Nicole remembers exactly where and when it happened. It was July 22, 2009, she said, and the family was at the Sugar Grove Corn Boil. And Kylie lost much of the movement in the left side of her face. They went to the emergency room immediately.
The diagnosis was Bell’s Palsy, normally caused by a malfunction in a cranial nerve. Dr. Natalie Lambajian-Drummond, the family’s pediatrician at Dreyer Medical Clinic in Aurora, said Bell’s Palsy is not common, but not rare either. When Nicole called her from the emergency room, Dr. Natalie (as her patients call her) said to make sure Kylie’s eye stayed hydrated, and that the paralysis should go away on its own.
“It’s a condition my cousins had, but it was a temporary thing,” Dustin said. “Kylie’s never went away. It got worse and worse.”
When Kylie started losing motor control, walking into things, Nicole took action. She refused to accept the Bell’s Palsy diagnosis, and brought Kylie in for as many tests as she could. Kylie got a CAT scan at Central DuPage Hospital in Winfield, and it, like all the other tests, turned up nothing.
“When the CAT scan came back fine, there was a collective sigh of relief,” Dr. Natalie said.
But Nicole still didn’t accept that her daughter would get better on her own. Certain that something more significant was wrong, she scheduled an MRI at Children’s Memorial Hospital in Chicago. The doctors there transmitted the results to Dr. Natalie at Dreyer, who called Nicole while she was driving Kylie home.
“She said come home, get Dad, and be here immediately,” Nicole said. “And when we went in, they told us she has two tumors in her brain.”
Part two of The Life of Kylie will be pubished at 6 a.m. Tuesday.