Mandy Moody Reflects on Decision to Have Six-Week-Old’s Eye Removed at St. Jude
The first weeks after childbirth are precious. Ideally, it's a time to bond with baby, but it's also a chance for mom to recover physically and emotionally. Mandy Moody's postpartum experience with her third child Lela was rudely interrupted when doctors discovered the strange glow in the little girl's left eye was actually retinoblastoma, a rare and malignant form of cancer.
Within a week of diagnosis, doctors at St. Jude Children's Research Hospital had removed the eye. Two months later, Mandy and her husband Jeff learned the cancer was genetic, so older son Ollie and daughter Savell needed to be tested. The family -- normally a structured bunch of five -- was thrown into a whirlwind of new information, questions and worries.
St. Jude provided stability.
When Mandy and Jeff met with Dr. Wilson at the Memphis hospital, he explained why removing the eye was recommended. Although a decision needed to be made quickly, he walked them through the steps of the surgery and what Lela's life would be like after. Then, he said they were free to get a second opinion.
"For me, I thought that it would be easier to do chemo," Mandy tells Taste of Country from the family's home in Knoxville. "And then my husband, he said, 'If we remove her eye, we remove the cancer.' Like she'll be cancer free. And it hadn't clicked with me that it is worth it to remove her eye if she can no longer have cancer. That gave me a real peace about moving forward."
After the surgery, the doctors confirmed they'd made the right call.
"After they got the eye out," Jeff Moody told the Starve the Doubts podcast, "he was able to see the tumor had already begun to bleed and break off, which means that any chemotherapy would have been a bloody mess.”
Kids can age out of retinoblastoma. Between ages five and seven, the retina fully forms, and the risk is all but eliminated. Mandy says she knew that since Lela's cancer was caused by a genetic mutation, they were at high risk of it crossing over to the right eye, something called bilateral retinoblastoma. But after 17 months of clean scans, they began to relax.
Last September, Dr. Wilson gave them bad news.
"I always text Jeff, 'All clear -- I’ll call you after I get Lela,'" Mandy said about a typical trip back to St. Jude for a scan. On this occasion, she called him as soon as she saw the doctor sitting when she entered his office. "I said, 'Hey, we have a tumor, listen to Dr. Wilson.' I wanted him to be able to hear everything Dr. Wilson was saying."
The family dodged a bullet in that the new tumor wasn't a seed tumor, meaning it wouldn't send out more tumors. They'd be able to treat it with cryotherapy, essentially freezing it away like you would a wart. All of those motherly worries can rushing back.
"Originally, you have to worry about life. Will I continue to have this child in my life? Are they going to live? Then, just daily you have to worry, is it there? Is it still -- like right now, does she have a tumor and I don’t know?"
Lela -- named after her great-great-grandmother -- just turned two last month, and aside from the prosthetic eye sewn into her muscles, she's just like any 2-year-old. She's never known anything different, so there weren't any developmental setbacks.
Her siblings were just four years and 17 months old when she went through her surgery, but throughout treatment, the staff has reached out to them to make sure they understand what's happening.
"St. Jude does a really good job," Mandy says, talking about how they reached Ollie, now six. "They had a coloring book that walked you through Lela getting her eye removed, what that would look like and what was going to happen, explaining it."
"When we came home, we set him down and went over it," she explains. "He absorbed what he could. He asked, 'Did this happen to me? Is this going to happen to me?' Of course we explained no, and what that would look like. Now he can really understand what that means for Lela, as far as not being able to see out of that eye."
The older brother is compassionate, almost protective of his sister. Savell doesn't quite understand, so to her, Lela is just a normal little sister.
"It doesn’t affect their daily life, what we do or how Lela plays, and their relationship with her," adds the loving mother.
Next to the first-class treatment, Mandy's favorite thing about St. Jude is the community that forms at places like the Grizzlies House, where everyone stays before the Wednesday checkups. There's dinner, a play area and space for parents to talk. Of course, like everything at St. Jude, it's all free.
"Lela will grow up with people that are like her, that have the same issues and she can talk to them, just share," Mandy says. "I guess her issues she’s going to grow up with that I wouldn’t necessarily understand."
These days, the survival rate for retinoblastoma is 96 percent, up from 40 percent in the 1960s. Like Jessica Turri and so many other patients and families of patients of St. Jude, Mandy feels ... fortunate.
Originally, you have to worry about life. Will I continue to have this child in my life? Are they going to live? Then, just daily you have to worry, is it there? Is it still -- like right now, does she have a tumor and I don’t know?
"I feel like we have grown as a family dealing with this. We’ve also seen so many people in our life be dramatically affected by Lela’s cancer as far as just loving each other and appreciating what they have," Mandy furthers. "Not being controlled by the daily monotony. Living life to the fullest and appreciating who is around you and what you have to offer. I don’t think that we would necessarily be there if that hadn’t happened."
On March 6 and 7, Taste of Country is pressing pause on coverage of all but the most pressing news stories in an effort to raise money for St. Jude. For 25 years, country radio, artists and record labels have helped raise more than $500 million, ensuring that no one ever pays a dime for treatment at St. Jude.
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