2010–2014
Nic wastes no time diving back into his childhood. He lives now as if trying to compensate for all he missed in his years at the hospital. He thunders around the Monona house. He savors the pleasures of McDonald’s Happy Meals. He enjoys real play dates—not the kind that take place in a hospital room. The winter of 2011 brings plenty of snow to Wisconsin, and he revels in the chance to do more than just stare at it from a window.
Prior to his release, Nic’s doctors engaged in long debates over how much time it would take before they’d be able to say that Nic’s mysterious intestinal disease had been cured. Though they developed an uneasy consensus around a hundred days, some doctors—Mayer in particular—remain hesitant to sound a medical “all clear.” Nic’s disease has fooled them before, and they don’t want to be caught off guard.
Mayer’s own benchmark is more conservative; the disease had first struck two years into Nic’s life, and Mayer thought of the cord blood transplant as a second birth. They would need to wait two years—more than six times the general consensus—before Mayer could be sure the disease wasn’t simply lying dormant.
But the boy races through every checkpoint. He reaches two hundred days, one year, even Mayer’s two-year mark—and still no symptoms of his initial disease reemerge. His gastrointestinal health is good, Mayer reports. No more painful holes in the intestine. He’s able to eat whatever he wants.
In July 2015, Nic marks the fifth anniversary of his transplant. The disease has not returned.
Those five years bring much progress. In April 2011, nine months after his transplant, Nic is able to return to kindergarten. In many ways, it’s the first real schooling of his life. Though he was enrolled in an early-childhood program in the early stages of his disease, when he was three, he was seldom well enough to attend. He had the same problem in four-year-old kindergarten, which he attended rarely. He wore a special backpack to hold the liquid nutrition that seeped through his intravenous feeding line. He never got to know the other children. All those years he was really enrolled in the hospital.
Now he resumes school. He gets invitations to other children’s birthday parties for the first time. It has been years since he’s been well enough to have a birthday party of his own. His life is just beginning to widen beyond the hospital into something like a recognizable childhood. He plays T-ball in the spring and summer and tries tennis, swimming, and skateboarding. Sean and Amylynne get choked up watching him. In previous years, even simple things such as going to the grocery store were a hazard; shopping trips often took place later at night, when there would be few people around and less risk of encountering viruses that might overwhelm Nic’s immune system. Now trips to the store, to church, to class are the everyday events they should be.
Nic’s progress has not been without difficulties, however. In the years following his transplant, his health remains a worry. He fights off another bout of sepsis, requiring almost a month in the hospital, and endures several shorter hospital stays. Beyond the medical complications, doctors suspected there would be other lingering repercussions from Nic’s lengthy illness. Any long hospital stay tends to leave collateral damage. Nic remains smaller and grows more slowly than many of his classmates, a result of the long stretches of intravenous feeding. After missing so much school, he lags behind his peers in classwork and behavior and has few close friends.
“He never got the chance to be that little kid,” Amylynne says.
Due to the colectomy, Nic will always require a bag to collect his waste. Though he’s used to the bag, he’s still bothered by it. No one else in his class has one. He sometimes wishes that the bag would disappear and the opening in his abdomen, the stoma, would close up, leaving his tummy as smooth as it was before the illness.
There is a less obvious difference between Nic and his classmates. As a result of the transplant, he has the DNA of two distinct people. Were Nic ever to commit a crime, he could leave two sets of DNA at the scene: his own, in a strand of hair; and that of the donor, in his blood.
The most alarming legacy of Nic’s transplant arises a little over a year after he leaves the hospital. He starts experiencing seizures, often several times a day, and is diagnosed with Doose syndrome. An epilepsy disorder of early childhood, Doose is a rare side effect of the cord blood transplant. It is harrowing to endure, both for Nic and for Amylynne, especially after all they’ve fought through. He starts taking a medication called felbamate, which helps somewhat.
Seeking a better solution, Amylynne locks on to the idea that cannabidiol, or CBD oil, might help Nic more. She works with mothers of other epileptic children to get a law passed in Wisconsin that allows them to access the marijuana derivative, which doesn’t provide a “high,” but is believed to reduce seizures.
It remains unclear whether Nic will grow out of the seizures or whether they will be something he lives with into his adult years.
Amylynne sees that in many ways her son’s life will continue to be shaped by the four years of his illness. In the fall of 2014, he is diagnosed with post-traumatic stress disorder. Some might view the diagnosis as a setback; but Amylynne greets it with relief. A diagnosis presents an explanation, which can, in turn, present an opportunity for healing.
After Nic completes eight weeks of talk therapy, Amylynne rejoices in a number of firsts. Her third grader sits through an entire movie without acting up for the first time since his transplant; he starts and finishes a school project with excellent comprehension; and he makes up with the child in day care he had viewed as his “number one enemy.” Within a few months, he is able to walk with his therapist through the surgery clinic at Children’s Hospital without tantrums or seizures.
Nic continues to improve. He enjoys class more, and he revels in the chance to play kickball with the other children. “Every day and every minute is a gift,” Amylynne says. His appetite improves and his diet expands. His favorite food changes constantly—there’s a potato chip phase, a beef jerky phase. He discovers guacamole, or as he calls it, “the green stuff that goes with chips.”
The young boy lives for weekends, which bring rides on the family’s fourteen-foot jet boat. Nic zips across Lake Monona, smile wide, lit up by the thrill of speed.
After the four grueling years of Nic’s medical odyssey, the family too is healing. Marked by financial stress and long separations, the years spent living in the hospital have strained relationships close to the breaking point—something that’s all too common among families facing an extended illness. By 2013, the cost of Nic’s medical care reaches $6 million, the point at which Amylynne simply stops counting. She and Sean just keep making payments on the old bills.
The couple grew apart during Nic’s illness, with Amylynne spending most of her time at the hospital and Sean spending his at home. “I had basically lived a year without him, and he’d lived without me,” Amylynne says. “When I came home, I was ready to get a divorce. I think we were both ready to divorce. Then Sean got laid off. We basically had to spend time together.”
Sean and Amylynne made a concerted effort to bridge the distance between them after Nic returned home. They had to relearn the dynamics of living together, getting Nic to school, shopping for food, cooking, and cleaning the house.
“We learned that, yeah, we really do like each other,” Amylynne says.
The time that Amylynne spent away from Sean during Nic’s illness, she also spent away from her three girls. She was missing in action for much of the girls’ critical teen years.
The girls were shielded from many of the worst moments in the hospital when their brother hovered close to death. As Amylynne explains, “I didn’t want them to become the siblings who lost their sibling. That was the pain I was going to spare them.” But Amylynne’s efforts, she believes, “probably backfired.” Instead of feeling protected, the girls felt ignored. The reason for their mother’s absence could never mean as much to them as the absence itself.
In the years immediately following Nic’s crisis, the girls all struggle academically and socially. Leilani quits the pom-pom team. During her sophomore year of high school, she gains thirty pounds and endures bullying. She begins drinking and staying out partying.
In 2011, Mariah moves out. A year later, Leilani and Kristen do the same. As Leilani says, “By the time we realized how much of a strain it was on the family, it was way too late.”
Still, they all work to ease that strain. Amylynne sends Leilani two dozen roses at school on her birthday, to her daughter’s delight. And in 2014, the family rallies to celebrate Leilani’s high school graduation. Now eighteen, she talks of becoming a pediatric surgeon, an idea she arrived at when her brother got sick.
Amylynne, a prolific Facebook writer, posts photos from the graduation, just as she did a few years ago with photos from the hospital. The intensity with which she joins Leilani’s drive to graduate, an achievement not assured until the final week of school, is reminiscent of the determination Amylynne showed throughout the course of Nic’s illness.
The Volkers have accepted, more than embraced, their roles as pioneers in clinical sequencing. Sean and Amylynne both have had all of their genes sequenced, largely to help doctors understand Nic’s condition and where it came from. But no other family members have had their genetic scripts read. They have no desire to know what lies inside their genes. The Volkers remain convinced that the initial sequencing of Nic was the right decision. He was dying, and doctors could do nothing until they solved the mystery inside his body. Their only hope was that Nic’s genes might harbor the answer.
Peering into the genetic script has proved to be a more troubling exercise for his parents. Amylynne already knows more about her own inheritance than she ever desired to know. Not only does she carry the mutation that made Nic so sick, she has risk factors for other conditions.
Sean is aware that his script contains warnings of its own, though he neither knows, nor wants to know, the specifics. He asked Amylynne to check his results. She waited at least a month before she told him what the doctors had found and even then explained only the general situation. He asked her not to provide details and she has honored his request, sharing the information with no one else.
“It’s hard for me,” she says, “because it’s something that really should be shared with the entire family. But I promised Sean.”
Though she hesitates to say it, the message she reads in both of their scripts is that they were never meant to have children. She has mentioned this conclusion to Sean, but they very seldom discuss it. If they talk about the more troubling aspects of their genomes at all, it is only in a light, half-joking way. So far, they have chosen not to talk about the subject in any depth.
“If I were to do it all over again,” Amylynne says, “I wouldn’t get my own information. It’s disturbing.”
Leilani agrees. She has told her mother she does not want to learn what’s in her genome. When she begins dating a man seriously, she is terrified by the thought of having children and possibly giving birth to a boy. The odds are 50 percent that she carries the same mutation her mother passed to Nic.
“I don’t think I’d want to put my family through what we’ve been through with Nic,” Leilani says.
For Nic, it may be many years before he develops strong feelings toward his DNA. He had no choice in the opening of that dark box. Doctors continue to debate whether parents should tell young children what is in their genes. It is one thing for a parent to know and make medical choices to save a child’s life. But suppose the script shows that a child is destined to have an incurable disease by middle age—should it be the child’s decision whether or not to live under such a shadow? Should they be told by the time they are old enough to have children of their own? The genetic script continues to raise questions that defy easy answers.
Nic is unaware of the debate his treatment brought to the forefront of medicine. He just knows that what happened to him in the hospital made him famous and different from other children. “I’m a celebrity now. People know me,” he says. It is half statement, half question.
“Kinda,” Amylynne answers. “In the medical world.”
Nic remembers a surprising amount about the hospital—the time he was dying from sepsis, the toys everyone brought, the names of the friends who visited and the doctors who treated him. He names his Japanese Chin dog Howard and sometimes calls him by his full name: Howard Jacob.
There are limits to what the genetic script can tell us, and there are questions that won’t be answered for Nic until years from now. Children who go through bone marrow or cord blood transplants and the heavy doses of chemotherapy that accompany the process often have hormonal problems and sterility. They are at greater risk of cancer later in life. Nic faces all of those possibilities.
Later in life.
Amylynne still remembers the terrible nights when Nic lay near death in the hospital. “Later in life” was the answer to her prayers back then. Only now is it something she can take for granted, as other parents do when they think of their children growing up.
On October 26, 2014, Nic turns ten. For the first time in his young life, his parents organize a birthday party and invite his friends. Too often he has spent his birthdays in the hospital or sick or forced to avoid other children to protect his battered immune system. An annual ritual for other parents and other children, the birthday party is momentous for Nic. For weeks leading up to the day, he keeps saying “I just can’t wait. I can’t wait. I can’t wait.”
The party takes place at Amylynne’s health club. Nic and nine other kids play kickball and dodgeball. They eat marble cake with vanilla frosting and even go swimming. During his illness, Nic could not go swimming, but he is well enough now. Some of the children come home with Nic and continue playing after the party. It is as near to a perfect day as the Volkers have ever had.
“It was huge,” says Amylynne. “It brought tears to my eyes.”
Nic loves to sing these days. The song “Let It Go” from the movie Frozen is one of his favorites. There is also a country music tune he has been partial to for a few years now, the Zac Brown song “Toes.” Some days he walks through the house singing with a smile, one that widens knowingly when he reaches the inappropriate bits.
I got my toes in the water, ass in the sand,
Not a worry in the world, a cold beer in my hand.
Amylynne smiles, too. She likes hearing him sing the next line: “Life is good today.”
Her family nearly fell apart, but it’s now rebuilding. Leilani has moved back in, and the other girls are in touch. At Thanksgiving dinner, Leilani takes a video of her kid brother as they sit down to eat. For family celebrations, the Volkers always open a bottle of champagne. This time Nic pops the cork.
“It’s Nic’s story,” Amylynne says. “But it’s really our story.”