Despite 2 brain surgeries, Ellie quick to smile, laugh

Parents of 7-month-old Spanaway girl face challenging debt from medical care

Staff writerAugust 26, 2013 

If you have an extra good thought on your hands, or an unused prayer, Ellie Walton could use it.

She’s 7 months old, so she can’t ask.

The second daughter of Sarah and Kyle Walton, Ellie has bright eyes, a big smile and one of those laughs that make adults go soft.

And for the second time in her young life, she’s had a brain tumor removed.

It was risky the first time, when Tacoma surgeons discovered in May that the tumor was taking up one-third of her cranium. They removed the tumor

successfully, but warned the Waltons their little girl might be slow to develop.

“It’s unbelievable how resilient she is — she’s my hero,” Sarah Walton said. “It’s hard to hear when the doctors tell us what she can’t do. But then she does it.”

Ellie can sit up on her own and crawls like a champ.

That wasn’t supposed to happen for her. But then, neither was the brain tumor.

Initial tests indicated it was a rare cancerous atypical teratoid rhabdoid tumor, the kind that strikes three children out of a million. The Cancer Care Alliance, however, found it was even rarer — desmoplastic infantile ganglioglioma.

“They sent samples to a lab in Texas, and doctors told us they only had 60 known cases like it,” said Sarah, who’s 24.

Ellie bounced back from that May surgery and dealt with an infection that followed. Doctors were concerned she might not be able to breathe on her own.

She did. And returned to the family’s Spanaway home.

For the last 21/2 months, Ellie has lived as normally as any child with a shunt in the back of her head could.

“When she’s happy, it’s perfect,” father Kyle said. “She loves her sister, Ava, who’s 4. Ava can just look at her and Ellie smiles and laughs nonstop. The other day, they did that for half an hour.”

Ellie was due for more tests this month, which found the tumor had regrown.

“We changed surgeons, changed hospitals,” said Kyle, 25. “Our first surgeon was good, but he hadn’t handled many cases like this. The surgery in May was his first of the year of this kind.

“In Seattle Children’s Hospital, they do more than 60 a year. For me, it was like going with a veteran football player over a rookie. It put me more at ease.”

The surgery Friday was delicate, with the tumor pressed up against the brain stem on one side and two key blood vessels on another. No one soft-pedaled the implications.

“We know it’s risky,” Sarah said.

For more than five hours, the Waltons and a large contingent of family and friends waited at Seattle Children’s Hospital while little Ellie did the heavy lifting. She came through well, though in midoperation she required a blood transfusion.

“It’s hard not to think of the worst,” Sarah said. “I was constantly throwing up because of it. You go through the what-ifs. Ava asks questions, and she’s been scared at night. I asked her what she’s afraid of.

“She said, ‘Of Ellie dying.’”

On Saturday, Ellie spent the day hooked up to monitors and feeding tubes. On Sunday, the Waltons were allowed to pick their littlest one up and take her for a walk.

“Another day in bed, she wasn’t having it,” Sarah said. “She wanted up and out. She’s recovering so much faster this time than last time. She was eating yogurt and ready to play.”

The Waltons won’t know until midweek whether the second tumor is malignant, or how much of it surgeons could not remove. One hope is that Ellie can grow older and stronger before needing chemotherapy.

“We’re hoping to take her home Tuesday,” Sarah said.

The problems won’t end there, of course. Ellie is a resilient, tough child fighting long odds. And the Waltons — Kyle works for a paper mill, Sarah is a photographer — are facing challenging debts.

“Without fundraisers, I don’t know where we’d be,” Sarah said. “People held a spaghetti feed for us, a car wash — and a man we didn’t even know, who’d heard our story, held a mixed martial arts event for Ellie.”

If you have a few dollars to spare today, Ellie and her parents could use them. There’s a website — www.youcaring.com/elliewalton — or you can contribute in the Walton family name at the KBR Credit Union in Tacoma.

Larry LaRue: 253-597-8638
larry.larue@thenewstribune.com
blog.thenewstribune.com/larue

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