GREENFIELD — When her eye seemed a little puffy that Tuesday afternoon in December, they wondered if she had a clogged tear duct. That happened before when she was a bit younger, and they knew it would clear up on its own.
But later in the week, her eye seemed redder. It could be pink eye, they thought. A kid at daycare had had it recently, after all. So, they kept a watchful eye for any itching or other symptoms. But they never showed.
That Saturday, Lauren and Chris Schaler awoke to find their 2-year-old daughter’s eye was bulging, so swollen she couldn’t see. As they headed out to an urgent care facility in Greenfield, they assumed they’d have a quick visit; that they’d walk away with a prescription and some advice on treatment.
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Click here to purchase photos from this galleryInstead, the Schalers and their young daughter, Caroline, wound up at Riley Hospital for Children in Indianapolis. And after hours of tests, X-rays and conversations with doctors, they learned little Caroline had cancer.
Now, they’re warning other parents to be mindful of this rare form of the disease. The tumor that formed behind their daughter’s eye grew so quickly, they want to make sure others know what to look for. Caroline’s prognosis is positive because it was caught in its earliest stages, and treatment was started quickly.
The type of cancer Caroline has is called embryonal orbital rhabdomyosarcoma.
Rhabdomyosarcoma tumors appear in 4.3 childhood cancer cases per every 1 million children, according to the National Institute of Health. They typically pop up in areas of soft tissue in the head and neck.
There is a 10 percent chance the tumor will form in the eye the way Caroline’s did, research shows: each year, there are about 350 new cases of rhabdomyosarcoma diagnosed in the U.S., and 35 of those cases are orbital rhabdomyosarcoma.
Most of the cases appear in children under the age of 10, according to the National Institute of Health. Luckily, the survivability is upward of 90 percent, experts say.
Their lives have become a whirlwind in the days and weeks since Caroline’s diagnosis, the Schalers say.
Doctors told the Schalers they likely caught Caroline’s tumor within a week of it starting to grow, which meant they were able to start treatment as quickly as possible.
They spent nearly a week at Riley immediately after learning of Caroline’s illness, where the 2-year-old underwent CT scans, MRIs and several biopsies. She had surgery to have a port placed in her chest, which doctors have used to inject chemotherapy drugs for the past three months.
They recently started a six-week stay in Chicago, where Caroline has started an intense proton radiation therapy at a children’s hospital there. This treatment should greatly decrease the chances of the cancer spreading, Chris Schaler said.
It’s been difficult teaching a toddler about cancer and its treatments, Lauren Schaler admits.
Caroline calls the port in her chest a spider. A good spider, whose many legs carry important medicine through her body.
Caroline’s uncle, Thomas Spille, a Greenfield firefighter, bought her a toy doctors kit, which they used to practice for her first treatment day, giving pretend shots and sipping pretend medicines — knocking their cups together with a “cheers!” every time.
They’ve mainly been trying to keep Caroline’s spirits up — which isn’t too tough, even under the circumstances.
Caroline has always been a bubbly little chatterbox. A smiley, silly, social butterfly, her parents say. And even in the worst moments, when her recent treatments have been their toughest on her, she makes them smile, too.
Lauren Schaler remembers breaking down, crying, at the doctors’ announcement her young daughter had cancer. Caroline just looked up her and said, almost exasperated, “Mommy, calm down.”
It brought a touch of laughter to what might have been the most difficult moment of her life so far, Lauren Schaler said.
Chris Schaler recalled with a laugh that during one of Caroline’s earliest chemo treatments, she asked her father to lie with her in her hospital bed. And as she cuddled up next to him, she whispered, “You’re so good to me.”
Through the #CarolineConquers, they’ve kept their friends and family apprised of their journey. The community helped raise more than $7,000 to help cover the cost of Caroline’s care, and well-wishers brought a truck-load of donations — paper towels, diapers, laundry detergent and other household goods — to the Chicago Ronald McDonald House where they’ll be staying for the next month.
“You think you’re world is coming to an end, but it’s amazing how your community can lift you up,” Lauren Schaler said.