September is Childhood Cancer Awareness month, although for Sarah and Kyle Walton, each of the last 20 months has been.
Now, after watching weeks of the ALS ice-bucket challenge postings on social media, these parents of a child with a rare, relentless form of cancer have come up with an idea of their own.
“We thought instead of doing that, we’d take a whipped-cream pie to the face,” Sarah Walton said. “Kind of a ‘whip childhood cancer’ thing.”
The Waltons will have a party for friends and family at their Spanaway home on Saturday. They will make a video recording of anyone willing to take a pie for the cause, then post the clip on Facebook.
Helping out will be daughters Ava, 5, who starts kindergarten next week, and Ellie, who won’t be 2 until December.
A year ago, I wrote a column about how Ellie and her family were dealing with life in her first seven months — a life that included two major brain surgeries to remove cancerous tumors.
Ellie is 20 months old now. The brain surgery count is up to five.
“She just had her fifth brain surgery about a month ago, and since then she’s been a little unsteady on her feet,” Sarah said. “She’s having fevers — 101-102 degrees every day — and they don’t know why.
“They’ve done spinal taps, an MRI, blood tests and found nothing. All they can tell us is the fevers aren’t good for her.”
The good news, perhaps the most surprising development, is that Ellie Walton is alive. The first surgery she had addressed a cancerous tumor — a teratoid rhabdoid tumor — that took up half her skull.
The last surgery attacked a tumor the size of a grape.
Still, Ellie is battling a form of cancer so rare doctors have found fewer than 100 other cases.
The last surgery seems to have taken a harsh toll on the little girl.
“Ellie is extremely cranky, in a lot of pain, and at night she just cries,” said Sarah Walton. “She sleeps maybe four hours a night. She’s not eating and has lost six pounds since surgery.
“Her speech took a hit, too. Before the operation, she could identify and say ‘dog,’ ‘cat,’ ‘bird,’ but now it takes Ellie a minute to process, and words aren’t as clear.”
Life wasn’t supposed to be like this.
Kyle, 26, works at a Tacoma paper mill. The last two years, his vacation has been spent at hospitals where Ellie has undergone one surgery or another. Sarah, 25, had a photography business she put on hold.
“Our last conference, our doctor was really frank with us, and said that even if Ellie’s surgery was successful, she could be stable for five years, then have the tumor grow again,” Sarah said.
“It could be five years, it could be next month.”
“I can’t start a job, I can’t go back to school, and they’re telling us it could be like this for the rest of her life.”
Older daughter Ava has helped keep Sarah sane. So has the support of a few dozen other mothers whose children have cancer.
“I’ve gotten to know tons of moms in this situation, friends I talk to every day,” she said. “I trust them, count on them. I call them with questions and find comfort just talking to them.
“Once you connect over something so emotional, it changes you. I cry more for them and their kids than I do my own.”
And then there’s Ava.
“At least once a month, we have an ‘Ava Day,’ and the last time it was seeing the ‘Ninja Turtles’ movie and going out to dinner,” Sarah said. “We know what she’s going through. Right now, she’s the only person that can make Ellie smile.
“Ava’s so helpful, and she’s the only person that can give Ellie her medicine, too. She adores her little sister, and Ellie adores her.”
Financially, the family is still struggling with medical costs.
“We ended up getting Medicaid, and it picks up pretty much everything, although it won’t pay for her MRIs, and Ellie gets one every three months,” Sarah said. “And we still owe about $60,000 on previous medical bills.
“We’re considering letting it go to collections and try to work out a payment schedule, maybe have some bills reduced.”
The toughest aspect, always, is seeing Ellie have to fight the impact of cancer and surgery, day after day.
“Before the last surgery, you couldn’t tell anything was wrong with her,” Sarah said. “Now, she doesn’t really do much. Ellie sits and cries a lot. She’s moody. Some days it’s better, but we can’t break this fever.
“For now, it’s our new normal.”