VIDEO: K.C. Dupps Tucker: Mom's nightmare has best possible outcome

Resilience.

It's a word that comes up frequently in conversation with K.C. Dupps Tucker as she talks about the dark days of 2014, when she and her husband, Joe, found out that their then 3-year-old son, Jimi, had acute myeloid leukemia. Tucker, who is a co-founder and partner at the Law Group of Northwest Arkansas, uses the word again and again to marvel at Jimi's perseverance, his fight, his will to live and the fact that, through it all -- the necessary toxins of chemotherapy, the dulling nature of morphine, the high fevers and nearly constant pain -- the bright light of his joyous personality was never dimmed.

As Tucker painstakingly walks through her family's harrowing journey from diagnosis to remission, she is, characteristically, upbeat and cheerful, despite dredging up painful memories. (That perpetually buoyant personality led her law firm co-founder and friend, Gary Weeks, to ask, "Why are you so happy?" when he first met her.) Sometimes, she speaks through tears, but she doesn't shy away from even the most difficult parts of the story. In the five years since Jimi's initial treatment, she's used her voice and experience to educate other parents about the warning signs of childhood cancer.

"Through this process, she has shared her vulnerability and marshalled her resources," notes Fred Scarborough, Arkansas Children's Hospital chief development officer and chief communication officer. "K.C. is an advocate for Jimi and all of the other children who are facing childhood illness. She embodies the champion required in order to deliver on the promise of a healthier tomorrow for her own boys and countless other children."

"We've tried to make good come from it, but it was bad, bad, bad," says Tucker. At the most difficult point in Jimi's story, when a reporter apologizes for making her relive it, she holds out a hand, and, through tears, says, "No, it's good. It's good. Because he did beat it. It has a happy ending. It does. And not everybody does."

Resilience, it seems, runs in the family.

Twist of fate

For Tucker, it wasn't a given that she would end up an attorney. Born in Kentucky, she and her family moved to Bentonville when she was in the fourth grade. She studied theater at tiny Colorado College and was headed for the life of an actress in Los Angeles when fate threw her a curve ball in the form of her soon-to-be husband, Joe Tucker. He was the roommate of a theater friend, and Tucker can't stop smiling when she tells the story of when the two met, their last year in college.

"Joe came down these stairs, and it was like out of a movie," she says. "And I know that sounds cheesy and ridiculous, but he's just -- he still is -- so beautiful. And I was like 'Who is that guy?' and we started talking, and I said, 'Let's play cards.'" When he couldn't find any in the apartment, Joe went knocking on doors to find a deck. Tucker later found out that Joe loathed playing cards. "I thought, 'Oh, see, he was smitten, too,'" she says with a laugh.

After that night, the two were inseparable. They each had post-college plans: Joe, a Spanish literature major, was headed off to Ecuador, and Tucker had signed a lease in Los Angeles to start after graduation in May. Joe helped her pack up a moving truck, and the two of them dropped off her belongings at a Los Angeles storage space and headed for a road trip up the coast to Joe's hometown, Seattle, biding time for two weeks, when Tucker could move into her new apartment.

"We were going to take a week to drive up, and then I was going to hang out there for a week and then come back -- and I never went back," she says. "I didn't even go get my stuff. We had a mover move it all. While we were [in Seattle,] we just realized we didn't want to be apart."

The couple settled into a tiny apartment and set about finding employment. Tucker soon found work in the vibrant Seattle theater scene, including a stint with a theater group that performed shows designed to raise AIDS prevention and treatment awareness.

The couple's shared traits of empathy and a heart to serve were further demonstrated with their next employment choices: Joe took a job as a counselor and Spanish language translator at a men's homeless shelter, while Tucker worked at a facility for chronically mentally ill veterans.

"We took turns with who came home at night crying," she remembers. "I had a guy throw a chair at me one time because I wouldn't give him money for cigarettes. And I didn't have any training for that -- I wasn't prepared for that. And Joe was pulling needles out of people's arms and had people coming in who had been horribly beaten. They were hard jobs for both of us."

They both also taught for a period before deciding to return to Arkansas so that Tucker could attend law school in 2014. A stint working in the law office of M. Flynn Feeney in Colorado had put the possibility of a law career in her head, and Tucker relished the opportunity to be closer to family again.

And so life continued to percolate: Tucker graduated with her law degree in 2007 and went on to earn her Master of Laws degree in agricultural law from the University of Arkansas School of Law graduate program. Friends and colleagues describe her as an incredibly smart, hard-working attorney who works fiercely on behalf of her clients.

"K.C. is a treasure," says Weeks. "She has such an authentic personality. Every day she gives of herself so generously, one might say philanthropically, financially, with her time and with herself. I think if you're boiling it down to what is it about her personality that causes her to be successful, it would be that she cares -- and the things she cares about, she does her best to do something about."

"K.C. exemplifies all of the characteristics that we try to impress on our students," notes Susan Schneider, director of the UA LL.M. Program in Agricultural and Food Law. "She cares deeply about her professional responsibility to her clients, and she is willing to work hard on their behalf. She's everything a client could want in an attorney -- smart, honest and creative in finding solutions. Her success has never dimmed her ability to listen, understand and respond to those in need. She's just a really good person and that translates into everything else she does."

She soon found herself ready to strike out on her own and start her own firm. In the spring of 2014, the future looked bright. She and colleagues Weeks and Kristy Boehler were in the planning stages of opening up their own law office in Fayetteville later in the summer.

Fighting for life

When 3-year-old Jimi started complaining of leg pain, his parents weren't overly concerned. Jimi -- who has the face of an angel and the spirit and courage of a lion -- had recently started taking karate lessons. So they weren't surprised when, at their first doctor's appointment, they were told it was probably a sprain. When his arm also started bothering him, the Tuckers returned, again and again, to the doctor. They had started to notice some lethargy, as well. When the couple left Jimi to spend the night with his grandparents while they took a weekend fishing trip, says Tucker, she was galvanized into action by her mother's observations.

"My mom said, "You're right. Something is off with him,'" says Tucker. "Not in a way that was 'You need to do something,' but she said it in a way like, 'I believe you -- you've been telling me something is off and there is.' My mom's so good. She's amazing. And hearing that made me think, 'OK, I'm going to push harder. We had already been to the doctor six times and had already made an appointment with a specialist."

The family of three packed an overnight bag and headed three hours away to Little Rock. Jimi spent hours undergoing tests and scans and, when the results caused immediate concern, a biopsy scheduled for early the next morning revealed the family's worst fears: Jimi was diagnosed with acute myeloid leukemia, a disease that strikes roughly 500 children a year. AML is rabidly aggressive; his treatments had to start immediately, and they were brutal. He would ultimately be bombarded with 100 doses of chemotherapy drugs.

The following months were a nightmare jumble for the two parents, frantic with worry, as they watched their son grow more thin and pale and experience more and more pain. Tucker and Joe stayed in Jimi's room for the entire 100 days that he was in the hospital. Jimi had recently won the hard-fought battle of toilet training, and, when nurses suggested he go back to diapers because his constant intake of fluids through IVs would mean repeated nighttime visits to the bathroom, he balked. He had worked too hard to go backwards.

"We said, 'You know what, he doesn't get a say in anything [else] right now,'" says Tucker. "'We can do that.' So we had to wake up every two hours and wake him up to help him go potty so we wouldn't be changing the sheets eight hours a night. And so what we did was take turns -- Joe would be on one night, and we would set the alarm. Every two hours, we woke up and helped him. And one of us would sleep on the couch one night, the other one on the floor."

Even taking turns, it was difficult to sleep at night. Tucker says that the wee hours of the morning -- without the noise and activity of the day to keep the darkest of thoughts from entering her mind -- was often the most difficult. A Facebook group created by friends and family to support Jimi and his parents helped keep them connected to their emotional support system.

"I'll never understand how she handled it so well -- she came out even stronger and ready to take on the mission well after Jimi had left the hospital," says Tucker's childhood friend, Leigh Greenwood. "That takes courage, to reside in the space that was once filled with so much fear and pain. She is brave beyond compare. She and Joe hunkered down, together, and beat the illness with Jimi one day at a time. They were relentless and loving all at once."

The Tuckers also felt support from and connection with the families they were surrounded by on the pediatric oncology wing -- all going through the same thing they were.

"We lived up there [on the fourth floor] for five months, and we got really close with other families whose kids were really sick," says Tucker, with difficulty. "The first day Jimi had chemotherapy, there was a lot going in the Hem-Onc wing. Of course, none of the doctors or nurses talked to us about other patients -- they are amazing at respecting the privacy of patients and their families. They could be comforting a family through the worst time in their lives one minute, then playing Ninja Turtles with Jimi while coaching Joe and me though the process for administering chemo the very next minute.

"But [4-K] is like a dorm; you share a little kitchen and a family room. You all have a washing machine and a dryer that you share. And you get to know everybody -- and you get to know and love these kids, who all happen to be sick. I realized in that moment, the first day he had chemo and so much was going on, that we were all dealing with something incomprehensible. However, there was such grace displayed by the families and caregivers. On 4-K, I saw the hardest things I hope I'll ever see, but I also saw superhuman love and strength. I saw kids and families thrive from the amazing treatment and care we received, and with lots of those kiddos, like Jimi, you'd have no idea what they've been through when you see them today."

While Jimi was in the oncology ward, several other children who also had AML lost their fight with leukemia before Jimi left the hospital, and the Tucker family wrestled with the wrenching emotions of grief for a child and a family they had grown to love and the ever-present terror that that fate would be one that their son might share.

Tucker is naturally upbeat, but this was unlike anything she had ever faced previously. She says that the only reason the family was able to maintain any semblance of positivity was due to their son who, despite his pint-sized, sometimes frail body, had a personality and will to live that knew no bounds.

"Jimi was awesome -- he was a little hero," she says. "We followed his lead, we tried to be positive, and we were, for the most part. He was so tough and resilient and still just 3 years old, through it all. And he still wanted to play, even at times when he literally had 15 tubes connecting to different things, a tree of IVs full of morphine and [total parenteral nutrition] because he couldn't eat and chemo drugs -- all kinds of things coming into him -- and he still wanted to play."

Jimi went home in November, only to be rushed back when he developed an infection that turned septic. He was so ill he couldn't eat, couldn't move, couldn't talk. Tucker confesses that, for the first time, she feared they might lose the battle. But Jimi had other plans: The week before his birthday in December, he was released and sent home. Since that hospitalization, visits have only been ongoing checkups and monitoring -- not only to make sure that the cancer hasn't reappeared, but also to monitor all of Jimi's physical systems, like his heart, that could have been detrimentally affected by the necessary toxins that were pumped into his body.

Health at home

The Tuckers will have to stay eternally vigilant to keep him healthy, and that means doctor's appointments -- lots and lots of doctor's appointments. When he was first released, the family drove back and forth from Little Rock once a week, then once a month; today, he needs just two checkups a year -- one in Little Rock, and one here at the new Arkansas Children's Northwest Hospital.

And this is why Tucker -- despite the obvious pain it causes her -- continues to tell the difficult story of Jimi's illness and recovery: She believes that quality health care should be accessible to everyone. No one should have to travel a far distance to acquire the best medical help for their child. No one should have to decide between financial stability and their child's life.

"People lose their jobs," she says emphatically. "People lose their homes. Fifty percent of families who have a kid with cancer file bankruptcy."

Tucker herself had just opened a new law firm when Jimi was diagnosed. She was lucky, she says, because she had co-workers who generously picked up the slack. But she knows that her situation was uniquely fortunate, and that not all parents are lucky enough to have a flexible enough workplace to make being away for five months feasible. This kind of financial insecurity that afflicts parents of sick kids is one of the things that galvanized her parents, Kirk and Cynthia Dupps, to raise money to make children's health care more accessible to the Northwest Arkansas region.

"My parents were really good about taking this really bad thing and trying to bring positive things out of it," she says. "My dad ended up chairing the campaign to build the hospital up here. He asked everybody he's ever met for money to build this hospital. He saw what it did to us -- we were only two hours and 45 minutes away, but he saw how far away we felt. And there were so many kids from here down there. So a group of people built this amazing hospital here so that most of the kids, not all, but most of the kids that need chemo or blood transfusions or things like that can just go here. And that means their parents can work. And that means that their siblings don't have to go find somewhere to spend the night. And that means that those sick kids get to sleep in their own beds. And my mom and dad built an infusion center, so that kids that have blood illnesses can get chemotherapy, kids with sickle cell can get their infusions.

"They gave us the best gift: They took the worst, worst time and made good things come out of it."

Tucker aims to do the same by recently taking a seat on the Arkansas Children's Northwest Hospital Board.

"And so now it's my turn to try to do something," she says with a smile. "I'm honored that they asked me. It's an amazing group of people on the board. I don't know exactly what I'll get to do yet, but I'm excited to try."

Tucker's legal experience will no doubt be an asset to the board, but perhaps even more valuable is her extensive experience in navigating the ACH system as a parent of a sick child.

"Personally, I want to make sure people know that that hospital is for every child," she says. "That is not a hospital just for kids with cancer or chronic illness. If your kid needs stitches, that's where your kid needs to go. We have great hospitals up here. I'm not knocking any hospital. But emergency rooms are geared toward adults. They might not have the right sized needles. They might not have the right sized beds. They may only have one or two cribs. Treating kids is very different."

And so Tucker -- and her extended family -- have figured out a way to turn the worst thing that ever happened to them into a blessing for other children and their parents. Though it helps soothe some of the anxiety that will always remain as an after-effect of Jimi's illness (as does therapy: all four Tuckers, she says, benefit from routine therapy sessions; "Mental health is health," she emphasizes), it cannot eliminate it entirely. But it's clear that the family has worked hard to turn a dark, harrowing negative into the brightest positive possible -- something Jimi helped show them how to do.

"I've asked him questions about it," Tucker says. "A lot of it is blurry to him, thankfully. But here are the things that he remembers: He could eat JELL-O any time he wanted. He remembers that we all got to stay in the same room -- he liked that we were sleeping on the floor, and that all of his grandparents got to come and visit a lot. He said, 'I liked everything about being in the hospital except for getting dressing changes.' He did not like that. He remembers Kelsey and Crystal, two of his nurses, and [that his doctors] were super nice.

"So, that's what he remembers. And there were so many times when it was so bad. But he doesn't remember any of that."

Resilience.

NAN Profiles on 09/22/2019