That there is comfort to be found in the death of a 13-year-old girl tells you just how difficult her short time on this earth was.
The strokes that were symptoms of her rare genetic disease and temporarily robbed her of her eyesight became so frequent that, from summer on, they increased to the point that she was suffering one every three to four days.
The pain was immense, yet she didn’t complain.
“No matter how much pain she was in,” her mother Angie said. “She was always just a sweetie.”
This is probably one reason why nurses at Community Medical Center stuck around after they got off shift, and came in on their days off, to hang out with Cheyanne.
Why her physician, Dr. Laurie Carter, and four of her nurses made the 150-mile round trip to Polson for her funeral.
“I think all the doctors who treated her in the last two years sent cards, notes or called,” Angie said last week. “Even today, the metabolic specialist in Colorado who saw Cheyanne wrote us. It’s amazing. Every day the mailbox is full of cards from all over the place.”
She had that way with people, Cheyanne did, with people who could neither understand how a child could suffer so many strokes, nor face the myriad of woes that accompanied them, with a smile.
Angie and her husband, Doug, long ago made the decision to sign a do-not-resuscitate order so as to not prolong Cheyanne’s suffering when the time came.
She turned teenager in the hospital, celebrating her 13th birthday on Aug. 28. Nurses put up signs and balloons, and doctors brought her bags full of presents.
But already, her mother was sure the little girl would not live to see Christmas.
“Every time she had a stroke, she’d get sick and vomit continuously,” Angie said. “She had acid reflux real bad and it was burning a hole in the bottom of her esophagus.”
Surgeons operated on Cheyanne, who was nourished through a feeding tube most of the last two years, performing a procedure that essentially separated her stomach from her esophagus so that nothing could come back up.
“But she’d still get the dry heaves,” her mother said. “Right after the surgery, she had a collapsed lung. I didn’t think she’d make it, but she did. For 2 1/2 weeks she was pretty weak, pretty sick.”
Finally, on Oct. 5, she got to come home to Polson.
The next week, she suffered another stroke.
It was Halloween of 2005 when Cheyanne came home early from trick-or-treating, complaining of a horrible headache.
“She was acting like she couldn’t see us,” Angie said.
Her parents took her to the family doctor in Polson, who ordered an MRI. Incredibly, the test showed that the 11-year-old had suffered a stroke.
The girl was immediately flown to Community Medical Center in Missoula, where registered nurse Maria Gurreri was one of the first to come in contact with Cheyanne.
The diagnosis came fairly quickly. The disease that would kill Cheyanne is called MELAS, a very rare and fatal form of dementia. The initials stand for mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke.
“It’s very progressive,” Angie said. “There is no cure for it, there is no stopping it, there is no treatment for it.”
The Coxens and their other daughter, Candace, first had to come to grips with the news.
But then they set about making Cheyanne’s dream come true.
Cheyanne loved all things Disney n the films, the songs, cartoons, Mickey and Minnie Mouse, Donald Duck, Goofy, Pluto.
And so Angie put in a request for a trip to Disneyland to the Make-A-Wish Foundation’s national headquarters.
It apparently got lost in the shuffle.
A social worker at Community suggested to Angie that she instead go through the Alaska, Montana, northern Idaho and Washington chapter of Make-A-Wish, and when Missoula volunteer Adrienne Dussault got involved, a trip to either Disneyland in California, or Disney World in Florida, was quickly approved.
The foundation even granted the Coxens’ a second wish n that Gurreri, Cheyanne’s favorite nurse, be allowed to accompany the family. All that had to happen was for state nursing boards in Florida or California to recognize Gurreri’s Montana nursing license, necessary for liability purposes before the Make-A-Wish Foundation could sponsor the trip.
“Cheyanne just loves Maria, and she’s been an angel to us from the beginning,” Angie said. “We really didn’t feel comfortable having a nurse from someplace else we’d never met assigned to us who probably would have had no experience with MELAS.”
She and Doug also decided that, because of the distance involved, Florida was out.
“The flight is so much longer, and it would have been so much harder on Cheyanne,” her mother said. “Plus, if anything happened, we’d be so much farther from home.”
So what happened? Florida recognized Gurreri’s license.
California didn’t.
And Cheyanne’s strokes kept getting more frequent, and the windows where she felt well enough to travel kept getting shorter.
There eventually came the day where the Coxens had to decide: Either take the long cross-continent flights that would land them at Disney World in Orlando with Gurreri with them, make the much shorter jump to southern California and Disneyland without their daughter’s trusted nurse … or skip it altogether.
What happened next literally took, Angie said, 15 minutes.
And it made a little girl’s life.
With the deadline there and Angie and Doug trying to figure out what was best for their child, CEO Bill Woody of Nightingale Nursing and Caregiving in Missoula, who had been trying to get Gurreri’s license recognized by the California Board of Registered Nursing, called the office of California Gov. Arnold Schwarzenegger.
He suggested to Schwarzenegger’s health policy advisor that if there was a time for red tape to be cut, this was it.
The Governator, or at least someone high up on his staff, apparently agreed. They dialed up the nursing board and told them to “make it happen,” according to Woody.
“I could not believe how quickly it happened,” he said. “We provided the liability insurance, but I was so impressed with how Schwarzenegger’s office dealt with it.”
On Nov. 17, 2006, Cheyanne Coxen, her parents, sister Candace, and nurse Maria Gurreri boarded a flight in Kalispell for Los Angeles.
Cheyanne had the time of her life.
“It may sound corny to people,” Gurreri told the Missoulian last year, “but it was so emotional for me and her parents, to see her so happy. I mean, she’s had such a rough time. I was prepared for it not to go well. Cheyanne is so fragile.”
But there was no way the 12-year-old was going to let anything, fatal diseases included, stop her from having a ball.
With VIP passes that let them cut to the front of the line on all the rides, the family hit Disneyland early and went until Cheyanne got too tired, then would retreat across the street to the hotel for a nap.
They would return at night when the Magic Kingdom was all lit up.
Pirates of the Caribbean and It’s a Small World were her favorite rides, but the best time, for her, was meeting the famous Disney characters.
Disneyland has a special lounge for terminally ill children who request trips to the park through Make-A-Wish, and Mickey, Minnie, Donald, Pluto, Goofy, Snow White, Captain Hook, Eeyore and more showed up to say hi to the 12-year-old from Polson.
“She was giggling like I’ve never heard her giggle,” Gurreri said. “I was cautious, because I was there to intervene if she suffered a seizure or a stroke, but it never happened. I think she was so looking forward to this that it rallied her physically.”
Gurreri made a DVD of the trip, and played it for Cheyanne on her 13th birthday.
“It was amazing how happy she was,” Angie said. “It was truly the best time of her life.”
After returning to Community in October after suffering yet another stroke, Cheyanne endured one of her worst seizures yet, on a Thursday. Her heart rate shot through the roof, she went into a coma and, Angie said, “Never really came out of it.”
That Saturday, Nov. 17, her kidneys began shutting down. Gurreri returned with the Disneyland DVD, and she and the family sat at Cheyanne’s bedside and re-lived the Disneyland adventure over and over, the little girl on the screen smiling every minute while the same little girl lay next to them in the bed, her eyes closed.
Three minutes before midnight n one year to the day since she arrived at Disneyland n Cheyanne Coxen died. It should come as no surprise that, in her obituary, her family asked that memorial contributions in Cheyanne’s name be made to the local chapter of the Make-A-Wish Foundation at www.northwestwishes.org.
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