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For seven years, through radiation and chemotherapy, a bone marrow transplant, two remissions and two raging re-emergences of cancer, BayLee Parks and her mother, Shellie Bassett, were guided by a motto: Never give up. Bassett even had that principle tattooed on her back.
Now Parks, 17, has stopped taking her chemo pills. But she doesn't see it as giving up.
"I want to live every day I have left," Parks says from her lavender-colored bedroom, nine days before Thanksgiving.
Every word is a struggle. Her hearing is going, her vision is poor, her throat muscles are failing so that it's hard to swallow and her voice is airy and soft. Her sentences are clipped.
"If I started again on the chemo, bad side effects that I've had before, that makes every day not good," says Parks. "I'd rather just live with the good days I have left."
Parks has been contending with medulloblastoma, a cancer of her central nervous system, since she was 10 years old, barely into fifth grade.
That she survived this long is unusual, says her pediatric oncologist, Carol Bruggers of Primary Children's Hospital and a University of Utah professor.
When children are diagnosed with this cancer, oncologists treat it aggressively, and expect that 50 percent to 60 percent will survive. But each time it comes back after remission, the chances of survival go down, Bruggers says.
By September 2014, Parks' prospect of defeating the cancer was gone. She was able to keep it at bay with chemo, but tumors showed up in her spinal fluid and around her brain in October.
Her body could not handle more radiation, and there was little in the way of chemo left to try, says Bruggers.
That's when Parks told her mother and father, Jimmy Parks, she was finished with the treatments.
Bassett says she had to fight her impulse to not let her daughter stop treating her cancer. "Like I tell her… 'I would keep you here forever. You could be in pain and sick and maybe comatose, but you'd be here.' That would be my choice," says Bassett. "That's so selfish of me, because I don't have to live with this. It's not my body."
Continuing the fight this past year gave Parks time to accomplish many of the items on her bucket list, most of it thanks to the Utah-based nonprofit Children and the Earth, which contacted Bassett after learning of Parks' fight.
She went to the Harry Potter theme park in Florida with her family, and also spent time at the beach. She was serenaded in her home last Christmas by David Archuleta, whom she first met at Primary Children's. Children and the Earth staged a full-blown Harry Potter birthday party in July, and commissioned a Hogwarts mural for her bedroom. She spent time this fall at a Bear Lake cabin with other children with cancer. Now she's awaiting a remodel of the Midvale home where she lives with her mother, brother, her mom's partner and his son.
Perhaps the most important fulfilled wish of all, however, has been this: to take a painting class.
Steve Stauffer, a professional painter, has been working with Parks since spring, helping her paint five oil landscapes. He arranged a one-night show of her art earlier this month at the Illume Gallery of Fine Art in downtown Salt Lake City.
Stauffer helped start another nonprofit, Angel's Hands Foundation, that helps families of kids with rare diseases so he has experience.
The first time they met, Parks was all smiles and giggles, so Stauffer nicknamed her Giggle Gus. They met once a week, in his studio or home or hers.
"She gets to forget about being sick and then she can create," says Bassett.
Now that Parks is weaker and spends much of her time at home, Stauffer drops by to see if she wants help finishing the last of the five paintings, a sunflower in the foreground of a barn. She intends to give it to her good friend and neighbor, who, with a clutch of other friends, has stuck with Parks through her trials.
"Even today, cancer hasn't beaten BayLee," says Stauffer. "She never gave up the will to fight. She is triumphant in her death."
Bruggers says that children and young adults will often continue cancer treatments past the point of a cure, past the point of enough-is-enough. It's to protect their parents from the grief.
"Sometimes parents have to say, 'You don't need to protect me,' " she says.
A hospice doctor and nurses now visit Parks in her home, giving her pain and nausea medication. She eats little.
Letting go of her as a patient is "so hard," says Bruggers. "She's a delightful young lady. She has incredible personal inner strength and resilience to go through what she does and to still be positive."
Days before Thanksgiving, Parks was anticipating the "stuffing and turkey" feast at her grandfather's, where the family gathers each year. She was reminding her mother they need to put up Christmas decorations.
And she and her mother were talking about what Parks wants when she dies: a party, not a funeral. Cremation, not burial.
She wants her ashes to be spread at the Wizarding World of Harry Potter, on a beach in Hawaii and put into lockets that her parents, friends and family members can carry with them.
She talks of reuniting, in heaven, with a childhood friend who died in a car accident last spring, with a pet cat, with her great-grandparents. "And," she says after a pause: "Heavenly Father."
Jimmy Parks, who lives across the street from his ex-wife and daughter, says he has learned so much watching the two of them fight cancer together.
"They … are a great example for so many people to not get caught up in their first-world problems. They've been positive and facing each day together with so much courage."
His daughter, he says, has shown the way through what might have been an awkward situation: their divorce, his living nearby.
"She has been our teacher. ... There is no room for anything else, no room for anything but love."