For Love of a Boy Named Folden Lee

Since losing her son, Folden Lee IV, to acute myeloid leukemia, Lori King Lee has dedicated her life to helping families of children with illness.

For Love of a Boy Named Folden Lee click to enlarge The Lees together at their Johnston County home.
For Love of a Boy Named Folden Lee click to enlarge Folden and Lori Lee

In June 2003, months after losing her father to cancer, Lori King Lee was looking forward to spending the summer at the beach with her three young children.

“I’d already packed the car,” recalls Lori. “In two days, my older daughter was graduating from kindergarten, then I was planning to drive to our house on Emerald Isle, unwind with the kids, and take time to process the loss of my dad.”

But for several months Lori and her husband, Folden, had been concerned about their youngest child, 17-month-old Folden IV. It seemed that every time Folden IV recovered from an illness, another would follow: an ear infection, pneumonia, nausea and vomiting, lack of appetite, lethargy, and more.

“They were illnesses you could link to being a baby,” explains Lori. “Maybe he was having a reaction to shots or maybe his sisters brought home germs from preschool and kindergarten. But by the time he was 15 months old, there’d been too much of it. We were worried.”

The day before the kindergarten graduation, the Lees’ pediatrician in Johnston County suspected something serious was going on with Folden IV and directed them to Chapel Hill, to UNC Children’s, for tests. Pediatric oncologist Dr. Julie Blatt ordered a biopsy. The results came back quickly: acute myeloid leukemia, or AML, a blood cancer in which the bone marrow makes a large number of abnormal blood cells.

The disease was advanced in stage, and Dr. Blatt advised Lori to go home, get what they needed for admission for treatment and extended stay in the hospital, and return to Chapel Hill immediately.

“I said, ‘Tomorrow’s my daughter’s celebration for completing kindergarten – can I not go to that?’” remembers Lori. “That’s when I realized how urgent this was. Dr. Blatt said I could stay a few minutes at the party, but I’d need to get Folden back for treatment.”

Home is where love is

Instead of living at the beach with her children that summer, the pediatric cancer unit at UNC Chidren’s became home.

“For months, everything I’d packed for the beach remained in the car,” Lori says. “I don’t think any parent comprehends what’s going on in those early days of diagnosis and treatment. As overwhelmed as I felt, though, the team at UNC told us what to expect and was so gracious and so caring. It amazed me.”

For Lori, the challenges of Folden IV’s illness weren’t confined to the hospital. As a stay-at-home parent, she was accustomed to being present for her children at all times. Suddenly, her daughters, Wilson and Anna Gaites, who were age six and five, respectively, had to stay at an aunt’s house for a weekend or were picked up at school by grandma.

“They were loved and had attention, but it also made it more difficult for me,” says Lori. “The situation already felt as bad as it could feel, then it was seasoned with the feeling that you’re not there for your other children.”

During that time, the Lees grew even closer as a family as grandparents, aunts and uncles, cousins, and more pitched in to support them. Meanwhile, their family grew to include the parents and family members of other children on the unit.

“You hear about children getting sick, but you never think it’s going to be you, then out of nowhere you’re in an environment with so many other families going through the same things,” she says. “We were in and out of the hospital so much that we got to see the battles other families were experiencing. In that situation, the unit becomes a community, and you share all the ups and downs, root for each other, and hold each other up on those bad days.”

In total, the Lees endured eight months of inpatient and outpatient care at UNC and six months of inpatient care at Duke, where Folden IV required consecutive cord blood transplants and extensive radiation after he relapsed.

Throughout Folden IV’s treatments and admissions, Lori and Folden watched as he continued to develop and grow as a boy. Lori brought every toy he had to his hospital rooms because she wanted them to be a place of joy for him. She sought to distract him as much as possible. Every day she pulled toy tools out of his toolbox one at a time and went over the names of the tools with him.

“I could tell he was developing as a child, apart from everything that was going on with him medically,” Lori says. “One week he couldn’t say ‘d’ or ‘r’ and the next week he could. During that time, I realized that wherever we were was home to him. For children his age, home is where your parents are and where the love is. It didn’t matter the structure we were in – old house, new house, beach house, hospital. He was surrounded by his family.”

As time went on, Folden IV relapsed and the Lees were met with the cruel reality of watching his continued development as a child and the unrelenting progression of his disease. But no matter how stubborn and persistent AML was, Folden IV continued using the letters and words he was learning daily. Eventually, whenever Lori or the care teams asked how he felt, he told them, “Me fine.”

“That was Folden,” Lori says. “Cancer couldn’t kill his spirit.” 

Me Fine

During Folden IV’s hospital admissions at UNC and Duke, Lori interacted with families several times a day – and often late at night while their children slept. Parents whose children’s outlooks weren’t good researched together and talked about options in other countries. Lori saw confetti thrown for children who were able to go home and saw demoralization on the faces of families who returned after hoping they were through with treatments.

“It was an amazing dynamic to be so close with parents in your same situation,” she says. “One of the first days I was at Duke I was talking with the other moms and more than one said, ‘Oh, we lost our house months ago.’ They said it as casually as if they were telling me they went to Target in the morning. It was internalized as something that’s part of the process of getting your child well. I was shocked. That shouldn’t have to be part of the process.”

Lori met moms and dads who couldn’t be with their children as often as she could be with Folden IV because they had to be at work, and missing work meant losing a job. These were the same families who supported her throughout Folden IV’s illness – people like the teenage patient who gave Folden IV a voice for Lori by telling Lori what he was feeling when he was too young to communicate it himself.

“I latched on to her,” Lori recalls.

In the months after Folden IV died, Lori felt compelled to do something for those families whose circumstances, by no fault of their own, made the experiences of their children’s illnesses even harder to cope with.

“I said to my husband, ‘We have to do something,’” she says. “I couldn’t imagine experiencing Folden’s illness, being able to support him to the best of my ability, while losing everything we had.”

Throughout Folden IV’s illness, Lori felt certain that he would survive and be the face for the Lees to help and support others.

“I thought our outcome would allow us to say, ‘We made it through and you will too, and we’re here to help you until you make it,’” she says. “After he died, I couldn’t let go of the need to help others in our situation. You can’t walk away from that experience, from meeting so many of these families, and not do something. I couldn’t handle that. And that’s how the Me Fine Foundation was born.”

Founded by Lori on September 1, 2004, the day Folden IV died, the Me Fine Foundation, in coordination with social workers at UNC Children’s and Duke Children’s, helps address the needs of families with children with serious illnesses.

“It doesn’t focus on any one disease and it doesn’t focus on the patient,” says Lori. “It focuses on the entire family. Are you losing our house? Do you need help with your mortgage? Do you need a gas card to help you get back and forth for your child’s clinic visits? Do you need food in your refrigerator? We’ve done amazing things and it’s evolved over the years because the needs are so great. We focus on what we can do so that mom and dad can be by that bed like I was because I think that matters more than anything else.”

To date, Me Fine has helped more than 2,000 families at UNC and Duke, from more than 50 countries. Through the foundation and via social media, Lori keeps in touch with many of the families she met during Folden IV’s treatment and hospital stays.

“I don’t think you can ever walk away from that,” she says. “You’re always part of that community. Even if I hear from them every week or once a year, it’s a constant connection – we shared some of the deepest sorrows of a lifetime.”

A Teacher and a Leader

For the past several years, Lori’s work in health care has expanded into new areas. In 2008, four years after Folden IV died, Lori was diagnosed with a triple-negative breast cancer. The cancer had been found early, and after surgery in Raleigh, she received treatment from Dr. Lisa Carey of UNC Lineberger Comprehensive Center.

Her experiences inform the physician engagement quality and safety training presentation she gives for UNC’s Institute for Healthcare Quality Improvement (IHQI). The training, which is targeted for residents but will soon include more UNC School of Medicine faculty, emphasizes patient- and family-centered care. Tina Schade Willis, MD, Associate Chief Medical Officer for Quality at UNC Hospitals and a physician in the Pediatric Intensive Care Unit at the North Carolina Children’s Hospital, directs IHQI.

“Throughout the day of training our residents receive, they hear from physicians and other health-care professionals about a variety of quality and safety issues,” says Dr. Schade Willis. “They also hear from families, and Lori’s talk, which focuses on patient- and family-centered care, is routinely the highest rated of the training.”

Lori tells the residents stories about her own experiences with breast cancer and the fears she dealt with throughout her treatment. As she weighed her options with Dr. Carey, she told her that she wanted to be as aggressive as she could possibly be – “hit me with everything you got,” Lori said. Dr. Carey helped her find a solution that made Lori confident that they were being as aggressive as possible while still accounting for the long-term effects of the treatment.

“That’s where the partnership between the medical professional and the patient comes in,” Lori tells the residents. “I would not have done well if I felt that I wasn’t doing everything possible. Dr. Carey was considerate, she listened to me, and she made sure I felt good about the decisions we were making. I was included in every aspect of my treatment plan.”

Lori’s experience extended beyond Dr. Carey to the rest of the care team. In one episode, her nurse practitioner, Anna Kate Owens, recognized Lori’s stress and used her medical knowledge and communication skills to put into perspective, in layman’s terms, what Lori was dealing with.

“It improved my state of mind,” Lori shares during her presentations. “It was a moment of patient- and family-centered care that improved my overall health, and it occurred because she was alert and connected with me and my thought process.”

Dr. Schade Willis remembers when Lori was nervous about committing to presenting at the trainings.

“It has to be nerve-racking to be a nonmedical person standing in front of all these physicians, teaching them,” Dr. Schade Willis says. “Initially, I think Lori was afraid that she didn’t have much to teach them – the truth is that she had no idea that she would teach them so much by sharing her experiences.”

Lori’s work in health care has also included her recent tenure as chair of the Family Advisory Board at UNC Children’s. In this role, she and the board have sought ways to make sure every parent that walks through the doors of UNC Children’s feels included, supported, and heard, no matter their background, their child’s health concerns, their financial needs, or the language they speak.

Two years ago, as UNC Hospitals launched its sepsis-reduction initiative, Code Sepsis, Dr. Schade Willis reached out to Lori about experiences Lori had with sepsis, including the loss of her aunt and the near loss of Folden IV. Dr. Schade Willis invited Lori to participate in the Family Sepsis Education Initiative, a novel program at UNC Children’s that seeks new ways to provide sepsis education to families of children at high risk of developing sepsis.

“As a parent of a boy with cancer, I remember the care team telling me about sepsis,” Lori remembers. “But I had so many other concerns on my mind. Then one day when we were at home Folden had a fever and the doctors told me to come in right away. I wasn’t sure it was necessary, but they were right – he became septic. The turn he took was so fast and so scary and so serious. Parents need to know about sepsis, but they need to learn about it when they’re ready.”

Lori has been educating UNC sepsis leaders – as well as sepsis leaders on the Children’s Hospital Association’s national sepsis initiative – on how to provide information to parents about sepsis, including the best times and ways to communicate with them after a child has been diagnosed with a serious condition.

“She told us, ‘The first two weeks of admission is not a good time to hand out material on sepsis,’” Dr. Schade Willis says. “And in listening to the reasons she gave, it made perfect sense – parents have so many adjustments they’re making to their new reality in the hospital. So, we’ve found, based on Lori’s experience, better ways to educate parents about sepsis.”

Another Chapter

Last month, Lori was diagnosed with breast cancer.

“I’d made it nine years without any evidence of disease,” she says. “That’s unheard of. Certainly, it’s not the news I wanted, but we’re suiting up for another battle and I’m confident that we’ll get the outcome we want.”

To prepare for the experience, she stepped away from her role as chair of the Family Advisory Board at UNC Children’s a year earlier than expected, but she’ll continue to think about ways to help families at UNC Hospitals.

“I don’t think people realize what a special place UNC is – how committed everyone who works here is to improving health care,” she says.

And she has experienced the commitment firsthand. When she received treatments nine years ago, she wasn’t alone.

“I can remember coming in for infusions and Dr. Blatt, Folden’s doctor, would sit with me, years after we’d lost him,” Lori says. “She showed up every time with a cup of coffee and sat down with me. The medicine would knock me out, I’d wake up 45 minutes later, and she’d still be there. She’d ask if I was okay and I’d say, ‘Yes, ma’am, I’ll see you next time.’”

Lori wants people to know that the caregivers at UNC never stop trying to improve care for their patients. If it were possible, she’d rewind 14 years and share what she knows today with the scared mom she was.

“I would love to be able to walk up to her and say, ‘The doctors here care,’” she says. “‘They’re not just writing prescriptions and following protocol. There’s one who cooks meals for families, one who showed up at every appointment when I had breast cancer even though I wasn’t her patient, ones who are so dedicated to training better doctors for you. There’s so much you don’t see – so many people here supporting you.’”

And she’d talk to the two sisters whose little brother is sick and whose mom and dad might not be able to be present for them the way they were before his illness.

“I’d tell them that there’s a Family Advisory Board here – that there are siblings like them on that board who are thinking about them and coming up with ways to help them, too,” she continues. “‘They’re cheering you on and doing everything they can to make it better for the next person.’”

Lori pauses.

“And that’s why I do this – to do what I can to make it better for others, in honor of Folden. Everything I’ve done has been for the love of that little boy. Every step I’ve taken, every speech I’ve given – everything I’ve offered someone has been for the love of Folden.”