Farmington toddler facing 2 serious diseases gets special visit

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FARMINGTON -- It's a most difficult family ordeal whenever a child faces cancer -- and cancer is only half the battle a little girl in Farmington is fighting.

Ellie Cason is only 21 months old. Her family calls her their "princess with wings;" but for the near future, this little Tinkerbell will have to stay on the ground.

"When she was two and a half months old, she was diagnosed with a neuroblastoma -- which is a cancerous tumor in her neck," explained Becca Cason, Ellie's mother.

What is... neuroblastoma cancer?

Neuroblastoma is a disease in which cancer cells form in nerve tissue of the adrenal gland, neck, chest, or spinal cord. It is the most common cancer in infancy, with an annual incidence of about 650 new cases per year in the U.S. Almost 50 percent of cases occur in children younger than two years old. The five-year survival rate for children diagnosed during infancy is over 80 percent. However, that percentage falls to 45 percent if the diagnosis is made at one year or older. -National Cancer Institute

At 5 months of age, Ellie and her parents went to Primary Children's Medical Center to determine the best way to fight the cancer. While there, something went terribly wrong.

"She was really weak, really breathing heavy, had a lot of heart failure; she was in total heart failure," Becca said.

An X-ray revealed little Ellie also had severe cardiomyopathy -- a disease of the heart muscle. Her heart was working at just 10 percent capacity. Twice, Ellie's heart stopped beating.

"It was hard to watch a nurse run down the hallway and yell, ‘We need paddles! We need paddles!" Becca said. "But she survived that too. … She's our little miracle child."

Becca believes Ellie has a guardian angel on her side. Before Ellie's birth, another daughter was stillborn: a baby named Eve.

"I kind of think of it as she's (Eve's) watching over her. She (Ellie) loves wings, so I always thought that her older sister Eve was watching over her," Becca said.

And Ellie's two oldest sisters are taking care of her. Macy and Adrie have taken Ellie under their wings.

Did you know...?

Approximately 12,400 children and adolescents younger than 20 years of age are diagnosed with cancer each year in the U.S. Approximately 2,300 children and adolescents die of cancer each year, making cancer the most common cause of disease-related mortality for children 1-19 years of age.

"It's hard, hard to see any of your kids struggle," said Nate Cason, Ellie's father. "But I think as a whole it's brought the family together. Her sisters, it's just brought them close together."

That bond will be needed in the next several months. Doctors must soon decide whether to remove the tumor or first try shrinking it with chemotherapy.

Though her heart has increased to 20 capacity, Ellie must be cancer free, or at least in remission for one year before, she can be put on the heart transplant list.

"That kind of complicates it with the heart issue. The chemo weakens the heart significantly," Nate said. "So we're just trying to keep things in balance."

They also try to keep Ellie smiling. Thanks to the Utah Hero Foundation, Ellie got a visit Thursday from Tinkerbell.

"Our neighborhood friends, family; it's been great. They've really come together in more ways than we can even count," Nate said.

The Casons should learn the next step for Ellie's treatment in about three weeks.

Meanwhile, the Utah Hero Foundation has organized a 5K race in Ellie's honor. It's scheduled for Saturday morning, Sept. 18, in Farmington. CLICK HERE for more details.

E-mail: kaiken@ksl.com