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“The hardest part with Kylie was that there were so many moments when we’d let our guard down, and breathe a sigh of relief,” Dr. Natalie said. “And then we’d be sucker-punched from the other direction.”
For the next few months, that’s how things went. Kylie and her family enjoyed the circus on Halloween, and then seven days later she was in surgery for the second time. And two or three weeks later, she was laughing and playing with her brother and friends again.
“Brain surgery is freaky and scary when you’re approaching it, but she bounced back,” Dustin said. “She proved how amazing and awesome she is by bouncing back so quickly.”
Still, the long treatment process had taken its toll. Kylie was no longer a candidate for most chemo drugs, and so the doctors at the University of Illinois Hospital in Chicago gave Dustin and Nicole an oral form of chemo – a capsule they were expected to break open, mash up, and feed to their daughter.
Kylie would take the drugs for five days in a row, and then have a respite for three weeks before repeating the treatment. And both parents agreed that it was incredibly difficult.
“We knew we were giving her poison,” Dustin said. “I had a hard time, because I knew what it was.”
Through all of this, the family drew closer with Dr. Natalie, an 11-year veteran at Dreyer Medical Clinic. As a pediatrician, she said, she’s often close with her patients and their families, and this case was no exception. She was often their first call, and her entire staff became friends with Kylie and her family.
And when Nicole lost her job and her health insurance, Dr. Natalie made a plea to her bosses to keep her on as a patient.
Natalie said she and Nicole had many conversations about when to stop the treatments, when to realize that Kylie wasn’t getting better, and just make her comfortable. They had more talks after a fresh MRI on Jan. 19 of this year showed the tumor growing back, not responding to the chemo.
“No one wants to give up hope on a child,” Dr. Natalie said. “But Kylie’s treatment, she suffered a lot. At what point do we just say stop?”
After that last MRI, Dr. Natalie said the family was debating another round of chemotherapy. But she was against it. And, she said, Kylie was too.
“Kylie had an innocence about her, but insights beyond her years,” she said. “She had a clarity, and she knew what she wanted.”
Natalie said she can only explain it through her faith in God, as if angels descend from Heaven and give children understandings they normally wouldn’t have. She said she has seen children comforting their parents during situations like this, something which she believes is God taking care of them.
“It’s heartwrenching, but it gives a sense of peace,” she said.
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After the news in January, Dustin and Nicole decided to stop the chemo, and start looking into alternative medicines.
“The treatments were making her sick, and were not helping her,” Dustin said. “She had more of a hard time concentrating, she lost her balance, she was lethargic. She would just sit and watch TV. She wasn’t active.”
Both parents said they were undecided as to whether her change in behavior was due to the tumor or the chemo treatments. But looking back, they agree it was the tumor.
“All through the treatment, she was never that symptomatic,” Dustin said. “She was capable of dealing with it. She was the bright spot of any room she was in. After Christmas, it all went downhill.”
The last month of Kylie’s life was hard on her. She was receiving in-home care from a hospice nurse. Her tumor was pressing on the part of her brain that controlled her speech, and she lost her cherished ability to communicate. She became difficult to understand, and this frustrated her.
The more paralyzed her throat became, the less she would eat – she dropped from 38 pounds to 26 in three weeks.
Kylie’s parents frantically searched for another way to bring her back. They called every doctor, every hospital, every children’s hospital, looking for one that may take a chance on another surgery. They came up empty – medically, Nicole said, there was nothing anyone could do to cure her.
And Kylie, always bright and perceptive, knew exactly what was happening.
“She was getting to the point where she was ready to go,” Dustin said. “Everything she had been through, the therapies, the hospital visits, 100 times under anesthesia, never affected her in any way, shape or form. Until that last month, she didn’t suffer any pain.”
Dustin said he never allowed himself to think Kylie wasn’t going to get better, until one day about a week before her death.
Kylie was in her room, watching Shrek 4 (“She must have watched that 100 times in the last weeks of her life,” he said), and not moving. It hurt to see her in so much pain, he said. So he leaned over and said, “Daddy promises it will get better.”
And she replied, “No, Daddy.”
“I said, ‘Don’t you want to get better, and play with your friends and cousins?’” Dustin said through tears. “And she said, ‘No, Daddy.’”
“I had never cried in front of her until that point,” he said. “It was one of the last intelligible moments we had together. It was the first time I had faced the fact that she was tired, she didn’t want to fight, she was ready to go.
“I always thought she was going to get better, until that moment. Until she told me.”
Part four of The Life of Kylie will be posted tomorrow at 6 a.m.