Part one of this story is .
“I knew right off the bat that it was bad,” Dr. Natalie said.
The technical term for the mass inside Kylie’s brain is a Primitive Neuroectodermal Tumor, but doctors sometimes refer to them as “peanut” tumors. They’re very aggressive, Dr. Natalie said, and very difficult to remove. Kylie was scheduled for brain surgery at Children’s Memorial the very next day.
When they arrived at the hospital, doctors performed an MRI, and discovered that the cancer had already spread to Kylie’s spine. Dustin remembers the moment clearly. He asked the doctor what kind of cancer his daughter had, and the doctor replied, “The worst kind.”
“I was crushed,” Dustin said. “I squeezed Mom’s hand real tight, crying, not knowing what to do or feel or anything. I hate thinking about it. My grandfather was diagnosed 15 days prior with stage four lung cancer. I knew then how severe what was going on with her was.”
“That changed my entire perspective on everything,” he said.
As for Kylie herself, she began to show the indomitable spirit that would define her. Kylie was a bright and intuitive girl. She was talking by two years old, spelling her name at three. And she was never scared to ask for what she wanted, or communicate what was on her mind.
Dr. Natalie remembers seeing Kylie and Devin in her office for checkups. Despite being the younger sibling, Kylie was always in charge, she said with a laugh. Kylie would choose stickers for herself and her brother, and keep the ones she wanted, even if she’d initially picked them for Devin.
“The word I use to describe Kylie is feisty,” Dr. Natalie said. “Her spirit never got down. For what that girl was facing, she really took it in stride.”
Dustin and Nicole both said they never lied to Kylie. They talked straight with her about what was happening, and what it could mean. And Dustin said she took it all in, and dealt with it with remarkable strength.
“She was a trouper,” he said. “She was so amazing. The most amazing little girl I’ve ever met.”
* * * * *
After the surgery, the long months of treatment began. Kylie had test after test to make sure the cancer had not moved anywhere else in her body. She had a bone marrow tap, a spinal tap, a CAT scan of her abdomen, a urinary biopsy. And along the way, her mother got an education, partially from watching the doctors, but also from doing her own research.
“I’ve always had an interest in medical stuff,” she said. “I wanted to go into the field. So I knew more than the average Joe.”
Kylie started chemotherapy on Sept. 22, 2009. For most of her treatment, Nicole would stay with her in Chicago, while Dustin remained home in Yorkville with Devin, working and keeping the house together. (“She was supermom, awesome and amazing,” Dustin said.)
The schedule was grueling. Kylie would submit to chemo for nine or 10 days in a row, and then have a few days off at home before the next round began. But if she came down with a fever, or if her immune system checks dropped below a certain number, she’d have to go back to Chicago right away.
The family had Thanksgiving and Christmas at home, but the chemo treatments lasted through March 27, 2010. And three days later, she started stem cell therapy – a process by which new cells are introduced to diseased or damaged areas, hoping they’ll take root and bring renewal.
The process, in Kylie’s case, took 20 days, during which she had to be kept away from viruses or contagions. She was kept in an area that could only be accessed through a clean room. Nicole had to use gloves to change Kylie’s diapers, since her urine could burn.
Following the stem cell treatment, the family had a small birthday celebration for Kylie in May, and then it was time for radiation treatments at Northwestern Memorial Hospital in Chicago, which lasted seven and a half weeks. Every day, Nicole would wake up and drive Kylie to Chicago by 7 a.m.
“People thought I was insane to drive it,” she said. “But we needed to be home. It was hell, but worth it. I didn’t drive for a month when it was done.”
The process required Kylie to be placed into a mask and sedated. Nicole estimated that Kylie was put under general anesthetic at least 100 times
But finally, on July 12, it was over. The battery of treatments had been completed, and for the first time in 10 months, Dustin, Nicole, Kylie and Devin were all home, all together.
* * * * *
There was a period of adjustment, Dustin said. The foursome had been apart for so long, and that had put a strain on them. But they took a trip to Disney World courtesy of the Make a Wish Foundation, and in Dustin’s words, “made awesome memories.”
“Kylie had an amazing time,” he said. “She got tired easily, but held her own. You could hardly tell.”
Doctors scanned Kylie once every three months, looking for any sign that the tumors were growing again. She wasn’t completely in remission, Nicole said, but she was doing well, and Dustin and Nicole allowed themselves to exhale. They had fun together as a family. They moved to a house in Montgomery, and Devin started at Long Beach Elementary School, while Kylie began attending Brokaw Early Learning Center.
And then, on Oct. 11 of last year, Nicole took Kylie in for her regularly scheduled scan. Dustin stayed home, and when Nicole called him, he could hear in her voice that the news wasn’t good.
The tumor was growing again.
“I went into her room, sat on her bed and cried for an hour and a half,” Dustin said. “My father came in, and he could tell. I told him, and we both cried together. That was a really bad day.”
Dustin said he never allowed the doctors to tell him percentages, or odds of survival. But he knew, as did Nicole, that a relapse meant Kylie’s chances had just diminished. While they both knew a relapse was possible, they had hoped it would be years and years away, that they would get to see their daughter grow up.
“I felt like we had just gotten her back,” Dustin said, wiping away tears.
Part three of The Life of Kylie will be posted tomorrow at 6 a.m.