Iowa City, Iowa

Lucy Roth was a seemingly healthy 2-year-old, until her parents suspected that she had vision problems.

“We would see her playing with toys, and she would drop things,” recalls Lucy’s dad, Damien. “She would pat around with her hands until she could find the object. Sometimes we would call to her and she would look past us.”

When screenings elsewhere seemed to indicate normal vision, Lucy's parents brought her to University of Iowa Stead Family Children’s Hospital. Pediatric ophthalmologists ordered an MRI, after which the couple was asked to meet with a neurosurgeon.

“Why would we be meeting with a neurosurgeon? That doesn't make any sense. We were just here for her vision,” Lucy's mom, Heather, remembers thinking. “A neurosurgery resident pulled up the MRI images. Nothing could've prepared us for what we saw.”

“The MRI revealed that Lucy had a massive brain tumor that was pressing on her optic nerve,” Heather continues. “As the images came up, we saw a massive, almost softball size, tumor.” The family met with a pediatric oncologist and Lucy was immediately admitted to the pediatric intensive care unit to await surgery that would take place three days later.

During the 12-hour surgery, pediatric neurosurgeons removed a large amount of the tumor, but Lucy lost a significant amount of blood, leading to a stroke that paralyzed the right side of her body. 

“It was an extremely difficult, dangerous surgery because the tumor was so big, it had wrapped itself around different blood vessels and was in a very difficult spot of the brain to access,” Damien says. “They had replaced every ounce of her blood in her body two times because she had lost so much blood during the surgery.”

“I just kept thinking, ‘Is this the last time I'm going to see my daughter alive?’” Heather recalls. “It was just excruciating to wait, not knowing whether our little girl would be coming back to us.”

Pathology tests revealed the brain tumor, an atypical meningioma, was cancerous. “This type of tumor usually isn't seen in children. Lucy's was extremely aggressive. It had been growing, basically, since she was born,” Damien explains.  

Heather recalls, “[Her neurosurgeon] said he had never seen this type of tumor in someone so young in his 40 years of surgery. There was only a handful of children in the world with a similar type of tumor and none of them as big as hers.”

Lucy underwent more than two years of chemotherapy and twice-daily hormone injections to inhibit the tumor’s growth.

“We were able to manage her brain tumor until she was 6 years old,” explains Heather. “Then she had her second brain surgery, and we were so scared because of all the risks involved,” Heather says. “But her neurosurgeons did an amazing job of removing more of the tumor.”

The remaining tumor was treated with 33 consecutive days of radiation and is currently stable, though it will always need to be monitored with routine MRIs.

Through physical and occupational therapies, Lucy relearned how to crawl, stand, and walk, and continues to build her strength. Heather adds, “She still struggles daily with the many side effects of her treatments and surgeries, such as chronic headaches, short-term memory loss, hormonal and growth issues, dental issues, and orthopedic issues.”

Though Lucy also copes with losing the use of her right hand, she would like to be an artist or art teacher, and she sees the positives in her children’s hospital visits.

“This hospital is creative, peaceful, colorful, mindful,” she says.

“While Lucy was going through her chemo treatments we would watch as the new children's hospital was being built. They put so much thought into what the experience would be like for the children. All of the little details, all of the new technologies, it just makes it so much easier to come here,” Heather explains.

“We've been so thankful to live so close to a world-class children's hospital where Lucy has access to all the specialists she needs. Over the years, she's been seen by over a dozen departments and is still followed by most of them,” Heather adds. “We can never thank Lucy's doctors enough for saving her life and for being so invested in her care as if she were their own child. The nurses, the child life specialists, the University of Iowa Dance Marathon students—all of them have been such an important part of Lucy's journey. We've learned that getting older is a privilege and every birthday is a milestone. Every year that goes by, we can't believe she's here with us, and to be such a happy, positive child.”

View the full roster of 2019 Kid Captains here.

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