'Warriors have scars": Local toddler fights rare form of leukemia

Photo by Corinne Nicholson

Photo by Corinne Nicholson

SUGAR HILL -- Like many children, Darby Farnsworth began walking shortly after turning 1 year old. Teetering and tottering through those first real steps, she began exploring the world on her own like any other kid.

Darby, though, began walking at the Aflac Cancer Center at Children's Healthcare of Atlanta.

Darby was diagnosed with a rare form of leukemia at just 13 months. She began walking while undergoing chemotherapy.

"Things that would fell you or me, she just comes right back from it," her mother, Lindsey Farnsworth, says at the family's Sugar Hill home.

Darby is now 19 months old. She's back at home, resting between her fourth and fifth rounds of chemotherapy. The darling little girl bounces around her house, mimicking her older brother's "Hi-Yas!" and karate moves, with a healthy appetite for Cheez-Its plucked from her favorite cup.

Like always, blonde peach fuzz has sprouted up between treatments.

You would never know that she's bouncing back from a recent bacterial infection, or in the midst of a largely trial-and-error treatment as the youngest documented case of her particular brand of leukemia.

You'd never know that the tiny toddler with an already well-developed affinity for handbags, flowers and smiles was in a battle for her life.

Says Tyler Farnsworth, her father: "She's such a trooper."

'It was everything'

On the Farnsworth TV stand sits a photo of Darby and her 7-year-old brother, Preston. Smiling with the Easter bunny at a nearby park, Darby's curls shine as Preston -- "her favorite person" -- makes a goofy face behind her.

It was the last photo taken before Darby and the Farnsworths began the journey toward their "new normal."

The Monday following this Easter, the Farnsworths took their baby, barely 1 year old, to the doctor for a routine checkup. Both parents had noticed odd bruising on Darby's body, on her hands, on her chest. Lindsey had had a high school friend die of leukemia years ago, and asked for a blood test, just to make sure.

Four hours later, they were called and asked to report to the hospital. Darby, their perpetually happy toddler, had acute promyelocytic leukemia. APL, a cancer of the blood and bone marrow rare in and of itself, but even moreso in someone so young.

"For that first week, we kind of just held her and cried," Tyler Farnsworth said. "It was so overwhelming. It was everything."

Doctors believe Darby, at just 13 months, is the youngest patient on record to be diagnosed with APL. St. Jude's Children's Research Hospital estimates that just 50 American children are diagnosed with the disease each year, accounting for about 1 percent of childhood leukemia.

Darby would be too young for the standard protocol.

"She's such a little sweetheart," says Melony Dame, a church friend of the Farnsworths who has helped organize several upcoming fundraisers for Darby.

"She was always just such a little happy baby and waving to everybody. She was just the sweetest little thing so it broke my heart to hear what she was going through."

Across a few feet of carpet, on the living room coffee table, a new photo of Darby sits inside a leather album. The same heart-wrenching smile, the same overflowing joy is there, but the curls are gone.

This photo was taken more recently. In a hospital, after a round of chemotherapy.

"You just have to decide that no matter what happens, it's not going to beat you," Lindsey Farnsworth says. "We feel like we know now that she's going to make it through this."

'High hopes'

Because of Darby's age, her treatment has been a unique one.

Frequently conferring with a worldwide network of childhood oncologists, Darby's doctors have devised a treatment plan that involves chemotherapy, ATRA (one of the drugs typically used to battle APL leukemia) and several other cocktails of different cancer drugs. Because there have been no studies on the effect of arsenic trioxide (a relatively new and successful treatment for APL) on a patient as young as Darby, her physicians have steered clear of it.

Dr. Katherine Hill is one of a team of Aflac Cancer Center physicians that helps take care of the toddler on a daily basis.

"Given her diagnosis and the fact that we have targeted therapies, we expect her to do quite well," Hill says. "She still has some more testing to do to help us determine whether she has maintained remission, but we have very high hopes for Darby."

During brief stays back at home between treatments, the Farnsworths have to keep the house especially clean. Doors stay locked, hands are constantly washed and Preston is "pretty much fumigated" when he comes home from school.

Darby plays with her favorite purse and beams with happiness, even when she's dragging along a bag hooked up to her chest for treatment of a recent bacterial infection that nearly took her life.

"It's hard for us because she's so tiny, she can't tell us that she's hurting or she's not feeling good," Tyler Farnsworth says, "but I think most of the time, she doesn't even notice that she's supposed to be sick."

"Nobody told her, so she doesn't know," his wife adds. "Even on her worst day, she'll tell you 'Hi' and she'll smile at you."

As Darby recovers from the fifth round of chemotherapy she began last week, more tests will ensue. If those show remission, she'll move right into maintenance therapy, a 27-month course of low-dose chemo hopefully getting her permanently out of the woods.

If the test results aren't so good, a far scarier proposition will lie ahead -- a final, "lethal" dose of chemo to kill her bone marrow, then a marrow transplant. There's no familial match.

Through everything, Darby has, and will, fight hard.

"She's just such a happy child," Hill says. "Even though her chemotherapy has been a challenge for her, she's tolerated it really well for a child her age. She's so playful. She's a joy."

'Going to break us?'

The Farnsworths are now on the verge of losing their home.

Lindsey was fired from her job as an office manager shortly after her employers found out about Darby's diagnosis. Tyler has been able to keep his position at QuikTrip, but tests, treatments and repeated monthlong hospital stays have them up to their eyeballs in financial problems.

They've accepted the fact that their home in a quiet neighborhood near Gary Pirkle Park won't be theirs much longer.

"At first, it was like, is this something that's going to break us?" Lindsey Farnsworth says. "Everything sort of fell apart all at once. Financially, her health, even our ability to be together. And would we lose her? Would we make it through that even if we made through everything else?

"At first, the answer was just, I don't know."

Ultimately, though, the answer was absolutely not. They've actually grown to credit Darby's sickness -- as heartbreaking as it's been -- with bringing the family together.

Young Preston, aside from being "mad at leukemia," has been the unsung hero of everything, his mother says. His selflessness through it all, an understanding beyond his years that Darby's sickness is bigger than the summer vacation he lost, has inspired his parents. The 7-year-old second-grader at White Oak Elementary wants to be a doctor.

Over their head in medical bills, foreclosure looming, the Farnsworths have gotten back to the basics -- faith and family.

"We're in the process of probably losing our house and everything that we have," Tyler Farnsworth says, "but as long as we have our kids and our health, that's really all that matters."

'Warriors have scars'

As a surgeon recently readied to place Darby's port (a sort of semi-permanent catheter connected to a vein in the chest for treatments), she made the comment that she wanted to avoid the area where the toddler's breasts would eventually develop.

It was the first time Lindsey Farnsworth really thought about Darby as a teenager. It was the first time she pondered how she would possibly explain the last six months -- and likely the next couple years -- to her trooper of a child, the little girl who experienced everything firsthand but probably won't remember a bit of it.

Looking forward in time to that moment is one of the few instances Lindsey Farnsworth tears up while speaking of everything her family has been through, too many financial, emotional, medical hardships to mention.

"I hope she will think, and what I want to tell her is, that she's a warrior," Farnsworth said. "Warriors have scars ... I just hope that when she sees them she can just know how strong she is, how much of an inspiration she's been to all of us.

"I hope that we can tell her that she changed our lives for the better. And I hope she'll believe it."