‘Cancer is messy’

The immense toll an intense childhood disease took on two Rappahannock families

It’s like being struck by lightning.

That’s how Lynnie Genho describes how she and her husband John felt last June when they were told their then six-year-old daughter, Anne, had cancer, specifically T-cell acute leukemia. It was both inconceivable and devastating at once, a numbing flash that would change their lives in ways they couldn’t yet imagine.  

How could this be, they thought when trying to be rational. How could their little girl have cancer?  

Six months later, another little girl, a grade ahead of Anne Genho at Rappahannock County Elementary School, was diagnosed with brain cancer. She’s Farrah, daughter of the school’s principal, Lisa Gates and her husband, Jeremy, who is learning facilitator for the school district’s Commit to Be Fit program. Like the Genhos, they juggled disbelief and dread. 

“The only time I could get relief was when I fell asleep,” Jeremy remembered. “If I woke up in the middle of the night, the first thing I would think about is that we might not have a daughter next year. That’s all I thought about.” 

Life gets messy

“Cancer is messy.”  

It’s a phrase often associated with childhood cancer since the disease can so profoundly roil day-to-day life. Overnight, a family’s routine can be taken over by medications and reactions to them, doctor appointments and lab visits, and hours on the phone determining who’s covering what expenses… or not. 

Appropriately, “Cancer is Messy” is the name of a free event scheduled from 1 to 5 p.m. on Saturday, May 14 at Eldon Farms. Genho said it’s meant to celebrate all cancer survivors and their families, but it will feature activities geared to childhood, rather than cancer — a slip and slide, petting zoo, bounce house and a mud pit. Anne Genho will be there. So will Farrah Gates.

It will be a chance to reclaim a sense of normalcy, particularly for the Genhos, whose immersion in the knotty tangle of cancer began about a year ago with what was thought to be a reaction to a tick bite. 

Anne said her neck hurt, and during a family vacation in the Great Smoky Mountains, she woke up crying most nights. She said it was hard to breathe when she was lying down. Something clearly wasn’t right. A trip to the pediatrician brought a scary diagnosis of Rocky Mountain spotted fever. Anne hadn’t spiked a fever or developed a rash, but she started on an antibiotics regimen. 

Then, all five Genho children tested positive for COVID-19. But the family made it through quarantine, and started back on their busy schedules. That included a ballet recital for Anne, and it was then, when she was wearing her ballerina outfit, that they noticed the lump near her neck. Another visit to the pediatrician prompted a recommendation that they take their daughter to the University of Virginia Medical Center in Charlottesville. 

During their long wait in the emergency department there, Anne practiced ballet.

“A shell of a kid”

They would soon learn that she had a four-inch-by-four-inch mass in her chest. That’s why she was having trouble breathing. It was pushing her heart and esophagus to the side, and had collapsed her left lung. A biopsy confirmed that she had a rare form of childhood leukemia. 

“This is a kid who’s terrified of tweezers, and there now were all these tubes poking out of her and all this stuff going at her,” said Lynnie. “It was a shock.” 

She remembers her daughter’s first month home as an “ugly blur.” Anne was put on a heavy dosage of steroids. That shrunk the tumor, but also made her gain weight, and even worse, induced diabetes. So Anne had to start taking insulin and getting pricked regularly to have her blood sugar checked. She withdrew, barely spoke. Lynnie and John thought that once she was home, Anne would find her old self, the girl who liked to catch salamanders and swim in the pond. 

“But it was almost like she was a shell of a kid,” said Lynnie. “You see all these pictures of cute, bald kids smiling and laughing, but she hadn’t smiled for a month. I told John that if the cancer didn’t kill her, this is gonna kill her.” 

Once she got off the steroids, though, Anne slowly started to bounce back. And when she turned seven last July she had a party of sorts. Five of her closest friends were driven by the house and waved happy birthday from their cars.

A scary seizure

For Lisa and Jeremy Gates, the lightning strike came as they were about to celebrate Lisa’s birthday last December. They had flown to Nashville for the occasion and left their daughter, Farrah, with Lisa’s mother and stepfather near Richmond. But on that first night out of town, during a FaceTime call, Lisa’s stepfather told them Farrah was acting strange. 

She had a stomach bug and seemed lethargic. But more disturbing was that she didn’t appear able to focus. They said both of her eyes were turned to the side and that she struggled to speak beyond one-word answers. When Farrah came on the screen, Lisa and Jeremy could see something was wrong. They told her grandparents to take Farrah to the hospital. 

While Lisa and Jeremy, 600 miles away and feeling helpless, waited for news, they worried that maybe it was a reaction to the COVID-19 vaccine Farrah had received a few weeks earlier. But they told themselves that once their daughter was checked out at the hospital, she would be fine. 

Their calm crumbled with the next call from Lisa’s mother. Farrah had had a seizure, she told them, and doctors wanted to transfer her by ambulance to Children’s Hospital of Richmond at Virginia Commonwealth University. 

“Then we really started getting really worried because we were so far away and we couldn’t get home,” said Jeremy. 

“It was awful,” Lisa remembered. 

They managed to find a flight out the next morning, and early on Lisa’s birthday, they flew to Charlotte, then Richmond, then grabbed an Uber to the hospital to see their daughter who had suffered what the doctors had called a focal seizure. It was a term they had never heard before. 

A brain surgery

Once they finally got to see Farrah, they were relieved. She seemed herself, aside from lying in a hospital bed with an IV in her arm. They felt even better when a doctor told them he was pretty sure that nothing was wrong. But he did want to do a few more tests. 

The first, an electroencephalogram, or EEG, showed “slow activity,” on the right side of her brain, according to Lisa. The doctor then ordered an MRI. Afterward, he asked if he could speak with the couple in a private room. “My stomach just dropped to the floor,” Jeremy said. 

His angst was justified. Farrah would need brain surgery to remove a tumor, the doctor told them. He reassured them that once it was removed, he thought she would be fine. But it was brain surgery.

“She’s had strep throat a couple of times, but really she’s never been sick,” said Lisa. “It was like ‘What? What did you say?’”  

Given a choice of having the surgery done before or after Christmas, the Gates chose the former, first to have the tumor taken out before she suffered another seizure, and also to allow Farrah to recover among family during the holidays. 

They both remember that the operation seemed to last forever. But the results were good; the surgeon felt she had been able to remove all of the tumor. Still, there would be more waiting. This type of brain cancer is extremely rare in children. So a sample was sent to a pediatric brain surgeon at St. Jude Children’s’ Research Hospital in Memphis. 

The Gates had been told at VCU that the tumor might have been at a Grade 3 level, meaning it was malignant and fast-growing. But ultimately, the expert at St. Jude determined that Farrah’s case was less serious. She wouldn’t need chemotherapy, only a seizure medication. The family also has emergency medication they can inject if she has a seizure. 

Otherwise, Farrah is back to her pre-surgery self. She didn’t miss any school after Christmas break. She’s playing softball and doing gymnastics, riding her bike just like before. 

“She came back so quickly,” said Lisa. “She never lost her balance. We had to tell her, ‘You can’t do handstands yet.’”  

A recent MRI showed a small spot on Farrah’s brain, but it’s thought to be scar tissue. Doctors will take another look next month.

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An old soul

For Anne Genho, it’s been a more daunting slog. She gets chemo infusions at a clinic in Charlottesville once a week, sometimes more often. She’s been in the hospital seven times since last summer, including a 25-day stay in March when she spiked a chemo-related fever that made her body unable to fight infections. Lynnie said she or John have slept in the hospital more than 50 nights since last summer. 

Anne hasn’t been able to attend school, but she did, at the beginning of the year, leave a stuffed shark on her desk to remind the other second graders that she was still their classmate. Instead, she’s been receiving lessons at home from elementary school special education teacher Kristin DiLello, about whom Lynnie said, “I could sing her praises for days.”

Most of the time, Anne has managed to stay positive through this ordeal, said Lynnie. Sometimes, though, the fight can feel too much. Not long ago, when her immune system had pretty much shut down, Anne buckled. “I’m done. I don’t want to do this anymore,” she told her mom. “I could just die.” 

“To hear a seven-year-old tell you that,” said Lynnie. “And I’m like, ‘You can’t because then you let cancer win.’ But that’s a real hard conversation to have because she knows there are kids who don’t make it.” 

The American Cancer Society estimates that nationwide close to 10,500 children under the age of 15 will be diagnosed with cancer this year. It predicts roughly 1,050 will die, but survival rates vary depending on the type of cancer and other factors.

The survival rate for children with Anne’s type of leukemia is above 85 percent. But her treatment involves a complex, multi-stage regimen of chemotherapy, including a maintenance phase that could last another two years. And, it’s not unusual for long-term chemo to cause other health issues, such as hearing loss, nerve damage and cognitive disorders. Anne also will likely be more susceptible to infections due to a shortage of normal white blood cells. 

From the beginning, Lynnie and John have talked openly with Anne about her cancer. She understands her situation, said Lynnie, and, in fact, has become a real advocate for herself in her care. 

“Anne is a quiet, introspective kid who can be pretty insightful,” said Lynnie. “She’s very mature. An old soul.”

A stronger bond

That said, she’s also only seven. So she’s looking forward to the “Cancer is Messy” party, more at the prospect of a mud pit than being a center of attention.  

The event has its roots in a community service project of the high school’s Leo Club, whose parent organization is Lions Clubs International. “At first, it was just a small idea, maybe just some fundraising at school,” said Meredith Siqueiros, the club’s president. “Then the idea started rolling into an event. First, just a T-shirt sale, but it kept growing.” 

After Farrah Gates was diagnosed, the planners broadened the focus to cancer in the community. But it soon became clear that the Leo Club would need help in pulling it off. The Lion’s Club jumped in, and it will be providing hot dogs, bottled water, and its signature yellow and blue tent. It also will create the much-awaited mud pit. That’s in addition to another team of volunteers who will lend a hand.

It’s the latest example of the goodwill and generosity both the Genhos and Gates say has helped them weather the trials of the past months. They say they’ve been touched, and even a bit surprised by the level of support they’ve received. It’s made them feel a stronger bond with the community. 

“Before, it was like this isn’t where we’re from,” said Jeremy Gates. He and Lisa only moved to the area from southwest Virginia in 2019 after she was hired as assistant principal at the elementary school. “But this has really sealed me in this area. I love it here. I really feel like we’re a part of this community now.” 

The Genhos have lived in Rappahannock since John was hired to manage Eldon Farms 17 years ago. But they, too, now sense a deeper connection. 

“We feel it, and I think our kids feel more connected, too,” Lynnie said. Even people with whom she hadn’t been particularly close, have been warmly sympathetic and openly compassionate. 

“They’ll come up and give me a big hug. That has been great.”

By Randy Rieland – For Foothills Forum

The Event

“Cancer is Messy”

A celebration of all cancer survivors and their families, featuring a slip and slide, petting zoo, bounce house and a mud pit.

• When: Saturday, May 14, 1 to 5 p.m.

• Where: Eldon Farms, Woodville

First person: How our family lives with cancer

For almost a year, my little sister Anne has been battling leukemia.

At times, our family’s life revolves around it. On days when Anne has an appointment for chemo, one of my parents has to drive her to the clinic at the University of Virginia.

There have been weeks when Anne is really sick. For a while, her arms, legs, and body were alarmingly thin. We’ve also had emergency visits to the hospital because she had a fever. A few months ago, Anne stayed in the hospital for 25 days, with my parents switching off who was home and who was with her. It was tough to be home and going about my normal life when Anne was suffering there.

Sometimes I hate the questions the most. Well-meaning people ask, “How is she doing?” and don’t realize how difficult it is to answer, over and over again: “She’s still in the hospital.” I don’t know anything more than they do. (Note: a hug and “I’m thinking of you” is a great alternative for anyone dealing with a family illness.)

Other times, there’s guilt. It’s not me going through cancer, or sitting with Anne in the hospital room, so I feel like maybe I don’t have as much of a right to be sad. Some days, this cancer thing seems like a breeze. When Anne is home and happy, playing and watching movies and hanging out with us, it’s easy.

This is my senior year of high school, and it looks a lot different than I ever imagined. Like other kids my age, it’s a busy time as I squeeze all the memories I can into my last year of childhood. I’ve also been helping my family as my parents devote so much time to taking care of Anne. I drive my siblings to school and often pick them up from sports and such after my after-school activities. I’ve become a spokesperson for our family when people ask how we’re doing, or what they can do to help.

This year has been memorable, but not just for the classic end of high school experience. My mom has told me several times that this isn’t how she planned for my senior year to go. If anyone could have laid out our lives, they wouldn’t have chosen for Anne to go through this.

But it has been an experience that my whole family has gone through together. We’ve had really challenging times, but also happy days. I think we’ve all learned to enjoy the small triumphs. In the end, we are still a team, even if we’re pulled in a million different ways each day. Anne’s journey through cancer has fused us even closer.

One of my favorite moments from the past few months happened several weeks ago. I was sitting on the piano bench before bed, scrolling through my phone. Anne suddenly popped up and wrapped her arms around me. She held onto me tightly.

I turned my phone off, tossed it on the table nearby, and hugged her back.

By Ava Genho — For Foothills Forum

Ava Genho is a senior at Rappahannock County High School

Foothills Forum is an independent, community-supported nonprofit tackling the need for in-depth research and reporting on Rappahannock County issues.

The group has an agreement with Rappahannock Media, owner of the Rappahannock News, to present this series and other award-winning reporting projects. More at foothillsforum.org.