When a cancerous tumor presses into the side of a little girl’s spine, her vertebrae can begin to grow crooked. The nerves running down her back can pinch and become injured. Absent those nerve signals, her leg can become nothing but a limp, fleshy club. The tumor can squeeze into and around her bladder and colon, stopping them from working properly.
Shawn and Natalia Hantke didn’t know any of this was happening when they watched their daughter Polina try — but fail — to stand up in her crib. It was May 2010, and the 9-month-old girl would grip the top of the crib in their Deadwood home. She’d rise up and then she’d quit and lower herself back down to her knees.
Other puzzlements followed. There was the dime-sized lump in her armpit. And Polina’s habit of using her arms to push around her left leg as she took a bath. Then that same leg fell limp “like Jello” when the couple tried to dress her, according to Shawn.
The Hantkes brought up their worries during several doctor visits that year. Nobody could say what was wrong. Their doctor referred the Hantkes to a pediatrician, who referred them to an orthopedic surgeon, who referred them to a pediatric orthopedic surgeon.
By the time the doctors slid Polina into a MRI machine in Denver in March 2011, it had been nine months since her parents first noticed the symptoms. She was diagnosed with neuroblastoma, a rare form of cancer that primarily affects infants and toddlers. Because it mimics the symptoms of more ordinary illnesses, neuroblastoma is usually found only after it has spread.
As Polina entered what would become months of chemotherapy and other treatments, and her parents split time traveling back and forth to Denver to be closer to the hospital, the Hantkes realized their lives would be forever changed. But even with that realization, numerous questions still linger — the same unknowns that plague any family undergoing the devastation, and rare moments of hope, of trying to save a child with an aggressive cancer.
Would Polina pull through? Would she ever walk again? Can they ever dream of living a normal life? And even with insurance from Natalia's job, could they ever recover financially?
In August 2011, as doctors prepared to operate, the Hantkes had to decide: should they allow the surgeon to cut Polina’s spinal cord? If he did, he’d be able to clean out the entire tumor. But Polina, 23 months old at this point, would be paralyzed from the waist down. Or they could take the risk and leave part of the tumor inside her and hope it stayed benign.
To save her chance to walk, the Hantkes chose the latter.
So in August 2011, Polina entered an operating room at Denver’s Rocky Mountain Hospital for Children, where a pair of surgical teams operated for 13 hours. As dawn broke outside, the first team laid Polina on her belly and opened up seven of her lower vertebrae. The second surgical team turned her over and cut her open from her belly button to her side, to reach the part of tumor near her kidney and her bladder.
She entered into surgery weighing 20 pounds. When she woke up in a hospital crib, she weighed two pounds less. Polina had lost a pound of fluid and a pound of tumor.
And yet, her treatment wasn’t even half over.
In October, doctors blasted Polina with a round of chemotherapy so powerful it destroyed her immune system. The treatment was timed so she could get a bone marrow transplant immediately after. After recovering from the transplant, Polina took radiation treatment and an experimental treatment called monoclonal antibodies, which are lab-engineered molecules injected back into a person’s body to attack cancer cells.
The poisons blasting their way through her young body brought their own risks.
"Every medicine they gave her, the side effect is cancer,” Shawn said one day while he sat at the kitchen table in his Deadwood home. “It's almost more likely for her to get leukemia than for her cancer to come back. Radiation gives you leukemia, chemotherapy gives you leukemia, bone marrow transplants can give you leukemia, monoclonal antibody can give you leukemia.”
Building a family
After getting divorced in the 1990s and moving back home to the Black Hills to raise his two daughters from that marriage, Shawn met Natalia online. The good-natured Russian woman with a master’s degree struck Shawn with her levelheadedness. After meeting and spending some time in the Ukraine, they married in 2008 and Natalia moved to America to settle in. Shawn, a former chef and auto mechanic, would finish his engineering degree. Natalia would work her way into an accounting job. Completing the family, Polina came along in September 2009.
But now, thinking back on the simplicity of life then, seems almost absurd. Shawn, 42, talks about how their lives jumped the rails into an alternate reality that he’s still trying to process.
He’ll speak in 15-minute strings of diatribes and medical minutia and darkly humorous stories about trying to keep Polina alive. He expounds on all the unknowns that dot every facet of Polina’s treatment and future. He speaks often of wishing he had a crystal ball.
Shawn withdrew from DeVry University, where he was studying engineering, and lived in Denver full-time for 18 months in charity houses to care for Polina. Natalia was lucky enough that her employer, National American University, allowed her to work eight days straight so she could have six straight off and go down to Denver to be with her family.
All the while, the bills mounted. At their kitchen table recently, Shawn pulled up estimated costs for some of Polina’s procedures: $805,000 for a bone-marrow transplant; $200,000 plus for chemotherapy treatments. In all, he estimates that Polina’s care has been billed at as much as $12 million.
Since Shawn was in college and Natalia didn’t make much money, state-funded Medicaid has covered many of their bills. But the constant travel to and from Denver left them about $20,000 in credit card debt, he says, and soon his $40,000 in student loans will kick in.
There’s a mixture of relief and guilt about Medicaid picking up much of the tab.
“We have to start writing thank-you letters for every person in South Dakota," Natalia said one night after getting home from work.
Beyond the grinding exhaustion of receiving daily medical bills, and aiding Polina through her treatments, they wrestle with those doubts that stare back down from the bedroom ceiling in a sleepless night.
Should they have let nature take its own course? Should they have allowed Polina to live five or six happy months — a short life but one without endless hospital visits and blasts of cancer-fighting poisons?
Will they regret not letting the doctors sever her spine to extract that last bit of tumor? Will Polina head to her high school graduation ceremony in a wheelchair? Or will she arrive in a pair of pumps, jumping up and down? Will she even live that long?
A life apart
As Shawn speaks one day in April, Polina slides around on her knees, which have been turned into a sled of sorts by a cast that keeps her legs open and bent forward. The cast came after a March operation to repair her hips. Polina had used her legs so little that her hips had fallen out of their sockets.
The cast is only the most visible example of the chasm that separates the bubbly and verbose blonde little girl from a normal childhood.
Since Polina's immune system is still recovering from the ravages of the cancer treatment, she doesn’t spend much time outside the home. Everything from a fever to a sick kid to a dirty carpet could potentially kill Polina.
The first thing anyone does when they enter the Hantkes’ home is take a dollop of hand sanitizer from a dispenser mounted next to the door, to erase any germs that could threaten Polina. A teacher comes by on Fridays to give her pre-kindergarten lessons. And when they held a third birthday party last September for Polina, guests stayed outside to keep germs from the house.
But that alone wasn’t enough. Even outside, “Kids bleached their hands,” Shawn said.
While Shawn stayed with Polina in Denver during treatments, Natalia worked 10-hour shifts and spent a second shift at their home, a one-story house in a quiet subdivision off Highway 385, to get their home ready.
She helped replace much of the home’s carpet with a laminate that wouldn’t carry fibers. The family had furniture shampooed and air vents professionally cleaned.
The living room, where Polina mostly resides, is stocked with seven plastic bags of toys from cancer charities brought home from Denver. There’s a 4-foot play kitchen set, a giant purple bouncy ball and stacks of games, race cars and stuffed animals. On an iPad, she plays Dr. Panda video games.
Polina’s been so socialized to life in hospitals that doctor games are her favorite, and she cherishes her toy stethoscope and doctor's white lab coat.
Most kids, when given a stethoscope to play doctor, will plunk it down vaguely somewhere on their chest. Not Polina. “She goes stomach, lungs, heart,” Shawn said, just like the real doctors who examine her.
Hope rises up
Incredibly, doctors have now declared Polina cancer-free, and she has been for 11 months now. The Hantkes will drive to Sioux Falls Tuesday for their next scheduled cancer screening, hoping the oracle of tests and exams will extend their fragile hopes.
Either way, neuroblastoma will shape Polina’s life forever. The tumor that caused her spine to grow crooked has left permanent damage. She has problems going to the bathroom. Her years ahead will likely include surgeries to repair some of those functions, as well as to straighten the vertebrae and improve her hips.
Maybe she’ll learn to walk — though like everything else so far in her diagnoses, the smartest people in the room all disagree.
“We got one expert that says she's paralyzed from the waist down, we got another that says she should be tap dancing,” Shawn said.
Since having her cast off in June, Polina, now almost four, has begun crawling and bouncing up and down on her toy dragon. She isn’t aware that her playtime is also a way to strengthen the long-dormant muscles in her legs and back. If she ever wants to walk, she needs those muscles working.
Even her acts of childish lawlessness bring relief. Polina recently pilfered a 30-yard roll of wallpaper and flung it all over the living room. In order to grab the contraband, she had to leave her floor-level comfort zone to crawl up part of the entertainment center.
As Shawn spoke on the phone last Thursday, Polina pestered him for the fold-out toy tunnel squirreled away in her crib, and some toys stowed in a plastic bag.
Life for the Hantkes is in a lull right now. No packing yet for next week’s trip. No hours of phone calls arguing over medical bills. No scheduling of procedures.
As Polina demanded her toys, life for Polina, Shawn and Natalia seemed quiet, regular. Maybe even — normal.
But will it last?
As Shawn has said so many times: a crystal ball would be nice.