By Tracy Record
West Seattle Blog editor
Before Mallory Carlson, a young mom of three, talked with us about the reason for our phone interview, she wanted to tell us about her love for West Seattle.
She moved here the first time at age 14, to live with an aunt and uncle. She attended Chief Sealth International High School.
The second time she moved here was the first time with her husband and their first child, a son who’s now 4 years old. They had to leave because her husband’s job search led them to California. “We’ll be back,” they promised each other. And this spring, they managed to return to what Mallory calls an “incredible community,” home to many members of her family.
It seemed like the first step into a warm, bright future. They had expanded their family with identical twin girls half a year ago.
And then, just weeks after their return to West Seattle … “this happened.”
That word, “this,” encompasses so much heartache … but also hope. Sisters Josie and Lucy were diagnosed with an aggressive type of leukemia that Mallory says affects only 100 babies a year – ALL. The girls are now two weeks into an experimental chemotherapy treatment that they will have to endure for nine months. And that’s if they’re lucky. That’s inpatient chemotherapy at the start of a two-year treatment plan, their mom explains.
“The girls are stable – but not doing well,” Mallory told us when we talked Tuesday afteroon. “At least, they’re not in danger of dying today. … For every day, we’re grateful, but this is truly terrifying.”
Mallory is a self-employed wedding photographer. She can’t work now for multiple reasons – not just the need to stay at Seattle Children’s Hospital with Josie and Lucy, but also because she has to limit her exposure to other people, for fear she’ll catch something and spread it to them. “If they catch a cold, it could kill them, so I’m trying to be incredibly careful.” Her husband has just started his new job and hasn’t accumulated paid time off, so he has to keep working so that they can cover mounting medical bills and keep the “fixer-upper” West Seattle house they’d bought before “this.”
So they are crowdfunding, painful in its own way for someone who says she’s never had to ask for help before, “but I have to put my pride away.” In addition to raising money, Mallory is also trying to raise awareness and end the stigma that invariably arises with the word “cancer.” If people don’t want to help her family, she says, maybe Lucy and Josie will inspire them to donate to a foundation researching childhood cancer.
Research has suddenly become a large part of the family’s life. The girls are part of a clinical trial right now – a trial that hadn’t begun when they were diagnosed, but, Mallory explains, was opened seven months early to admit them. It is a trial that expands the chemotherapy currently used to treat ALL.
How did they both get it? Because they shared a placenta, one spread it to the other, Mallory explains. Josie was the first diagnosed, and the double diagnosis drew researchers’ attention quickly, enabling them to get into the aforementioned trial. “It could save them, at least keep them in and no matter what happens to them, it could change medical history … (but) even if it doesn’t save them, I want to bring awareness to this awful, awful rare disease.”
Their care is estimated to cost $1 million per twin – per year. “We are doing everything we can, but this fight is bigger than us alone,” Mallory says. And bigger than two very little girls living in a hospital right now.
Here’s the crowdfunding/updates site set up by friends and family.
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