Mitchell’s House

Mother gives home base to families affected by terminal pediatric illnesses

By Brian Hudgins

The moment Meg McElwain (BA 01) heard the word, everything changed. “When I was pregnant, I worried about things like: Would my kids have peanut allergies and what was I going to pack them for lunch? Then I had a child with cancer,” she says. “I never in a million years …” Mitchell Bays Turner was 3 months old when his mom heard the diagnosis: ALL — acute lymphoblastic leukemia. It is a very rare diagnosis for infants. About 90 cases occur annually in infants under the age of 1, according to the National Institutes of Health.

McElwain took her son to the family’s pediatrician in Charlotte, North Carolina, because Mitchell had bruising on his legs. A blood panel test on a Monday morning in 2012 determined two possibilities.

“Our pediatrician said, ‘We are sending you to the hospital,’” McElwain says. “Mitchell is anemic, and his white blood count is extremely high. The best-case scenario is he has a blood infection. The worst case is he has cancer.”

Cancer was confirmed in a matter of hours.

Illustration by Mitchell Bays Turner

Counselor and child doing sand therapy | Photo courtesy of Meg McElwain he last decade has been a journey that included two grueling years of treatment for Mitchell. He died in 2014. During the prolonged hospital stay, McElwain started the Mitchell Bays Turner Pediatric Fund — as a donor-advised fund to serve the St. Jude Affiliate Clinic at Novant Health. Hospital staff members helped identify family needs, such as mortgage payments or financial coverage of funeral expenses.

“We also were able to provide transportation for an 18-year-old in Philadelphia who was terminally ill,” McElwain says. “He wanted to come home to die. We paid for ambulance transport to get him back to Charlotte.”

Mitchell’s Fund recently opened Mitchell’s House, a nonprofit counseling center that includes counselors who provide art, play and talk therapy to more than 200 children each year. Mitchell’s House opened its doors in mid-March, more than two decades after McElwain initially moved to Charlotte.

Counselor and child doing sand therapy | Photo courtesy of Meg McElwain

McElwain, a Grenada native who earned a bachelor’s degree in journalism and public relations from Ole Miss (minor in English), moved to Charlotte in 1998 and started a sales job within a couple of weeks. Five years later, she opened her advertising firm Magnolia Marketing. Cancer created a new mission.

“That firm existed for almost 15 years,” McElwain says. “The year Mitchell was born (2012) was my 10th year in business. I was on top of my game. I never thought I would not have Magnolia Marketing.”

Following Mitchell’s cancer diagnosis, McElwain maintained Magnolia Marketing. His death, a mother’s grief and her resolve moved her in a new direction.

“I didn’t want to do [marketing] anymore,” she says. “I didn’t want to do anything when he died. Moving forward, I decided I was going to be my true, authentic self in everything I did. That makes business politics hard.”

McElwain was president of the Charlotte Ole Miss Alumni Club for five years, so as Mitchell’s story became better known in Charlotte, fellow Ole Miss graduates chipped in their resources.

Ashley Anderson Mattei (BA 97), a Plano, Texas, native, graduated from Ole Miss with a bachelor’s degree in broadcast journalism and English. She had taken classes with McElwain, and the two reconnected through the Charlotte alumni group. Mattei and her family were living abroad in France when Mitchell died. A Charlotte-based outlet kept Mattei emotionally locked in to the McElwain family’s experiences.

Counselor and siblings in the teen room | Photo courtesy of Meg McElwain

“Meg wrote about being a ‘momcologist’ for the Charlotte Observer,” Mattei recalls. “It was so authentic and personal. It was really helpful for those who felt helpless. It was a good window into this nightmare they were living.”

Mattei, who served as a producer, reporter and anchor for WCCB, a CW-affiliated TV station in Charlotte, realized the importance of Mitchell’s Fund for families who faced a grim prospect.

“So many families lose a job (with a child hospitalized),” she says. “It is not a great choice as medical bills pile up. From the beginning, Meg was so generous thinking how she could support other families.”

McElwain and Ashley Anderson Mattei | Photo by Daniel Coston

The support was not limited to financial assistance. When McElwain shared her story at a church luncheon in 2014, Mattei saw the emotional effect on people who heard the details.

“That baby was only 2, and he went through all that,” Mattei says. “It says a lot about Meg that she is able to say that story. It is very powerful.”

As McElwain explored various ways Mitchell’s Fund could assist Charlotte residents, Mattei also saw the power of Ole Miss, as alumni answered the call to help.

“Ole Miss people in North Carolina are instant family,” Mattei says. “Ole Miss still feels like a small school. I am grateful there is something we can do (to help).”

The community effort helped McElwain transform Mitchell’s Fund from an emergency funding provider for families with a child facing a life-threatening pediatric illness to a support program for children and families who have experienced trauma.

“I knew from the beginning we would do something in mental health,” McElwain says. “I didn’t know what it would be. We were serving obvious needs in the beginning.”

After Mitchell died, the chief pediatric oncologist in the St. Jude affiliate clinic where Mitchell was treated had a question for McElwain. Would Mitchell’s Fund pay the salary of a counselor/play therapist to work in the clinic? McElwain immediately said yes — and that resource was added to assist families. Mitchell’s Fund paid that position for three years. During the past two years, McElwain started getting referrals for families whose child had been diagnosed with a rare disease and the child was terminally ill.

“When there are other children in the home and one is actively dying, the whole family needs support,” McElwain says. “It became clear we should start our own nonprofit counseling center.”

MOTHER TO MOTHER

McElwain knew the battles those families were facing. She had experienced them firsthand: being in a stressful hospital environment, keeping medical appointments, making sure prescriptions are picked up and maintaining communication with in-home health care providers.

“That is on top of your life as a parent who is managing children’s schoolwork and their activities and trying to keep their lives as stable as possible,” McElwain says.

The next steps involved finding a brick-and-mortar facility that could serve as a home to handle those complex needs. It needed to be affordable for a nonprofit and be close to both children’s hospitals in Charlotte. Adequate parking was another necessity.

Not long after Mitchell’s Fund started searching for a place for Mitchell’s House, one of McElwain’s business colleagues invited her to tour a new office. She had found the location for Mitchell’s House.

“It all happened so quickly, and I was excited to have a place where families with sick children — and the siblings especially — can come find relief and learn coping skills,” McElwain says. “The reality is if you have a child with a terminal illness in your family, there are going to be survivors. It’s important those survivors have coping skills that lead toward resilience.”

When Mitchell was diagnosed with ALL, his older brother, Frank, was 3 years old. A world that had contained routines for the first three years changed instantly. Frank’s brother was sick. Mom was frequently at the hospital. Young children do not have words to express feelings, and it shows in negative behavior. Mitchell died when Frank was 5 years old.

“Frank was physically ready for school, but not emotionally,” McElwain says. “It was a lot for him to deal with … having to visit his brother in the hospital, emergencies that happened at home, doctors, nurses. That’s a lot for a child. It’s a lot for an adult. Counseling helped.”

For many parents who are in their 20s or 30s, caring for a terminally ill child marks their first time experiencing extended hospital stays. Mitchell’s House has on-site counselors to discuss those feelings with family members of severely ill pediatric patients.

McElwain’s contributions to parents do not come from a medical perspective. She is a mom who watched her child on life support for a week. She had to make a decision.

“It was 3 a.m., and Mitchell was in distress,” McElwain says. “I was there alone and had to sign paperwork to put him on life support. When it was clear that he was no longer there, I had to sign to turn it off. I walked out of the hospital an hour later without my child.”

Now, from time to time, I will be referred to a young mother who is with her child on life support. Most recently, I had a 28-year-old mom whose 2-year-old child had been fighting cancer for over a year.”

That mother had a question for McElwain. How did you know? How did you know it was time to turn life support off? McElwain wondered to herself: What do you say to a mother?

“No one can tell you when it is time,” McElwain says.

McElwain and son Frank Turner | Photo by Rick Hovis

“You are the only one who can make this decision, and you will know when it is time. It was clear to me. It was horrible. My child was unrecognizable. He had liver and kidney failure.”

There are many other milestones in McElwain’s memory. The family had been in the hospital for two weeks, and the medical team offered morphine as an option to ease Mitchell’s cries and pain. McElwain described having to ask someone to administer morphine to her 3-month-old baby as “life changing.”

McElwain and Kaye and Bill McMullen | Photo by Daniel Coston

COPING SKILLS

Considering those questions connected to medical care, paperwork, job responsibilities and family needs continually need to be answered by parents, McElwain’s motivation to get Mitchell’s House opened in March largely centered on giving family members a new set of coping skills.

“We want to give parents those skills because their child is looking at them as their beacon,” she says. “Their parents’ behavior and emotional state is a compass for the child, the siblings and the whole family.”

The Ole Miss family provided McElwain guidance at various points in both Oxford and Charlotte. McElwain credits Ralph Braseth (MA 92, EdD 96), former director of student media and assistant professor of journalism at Ole Miss, as making a huge difference for her.

“He had more influence on me than he ever knows,” she says.

As McElwain ramped up her plans for a stand-alone Mitchell’s House, Bill McMullen (JD 69), who earned his undergraduate degree at Duke University before earning his J.D. from Ole Miss, provided a voice of experience in Charlotte.

When McElwain was crafting her Mitchell’s House business plan, McMullen said he was glad to review the material and give his input on best practices. McMullen is a Virginia native who later moved to Charlotte. He was “an outsider” who came to Ole Miss, which helped shape his view of McElwain’s journey.

“She started Mitchell’s Fund — an incredible organization,” McMullen says. “She got people to work together as an outsider.”

Families were able to go inside Mitchell’s House following its grand opening on Feb. 27. The opened doors marked the first steps on their new journeys.

“When families come into Mitchell’s House, they don’t have to begin by explaining all of the medical environment,” McElwain says. “Our counselors understand that. It takes a layer off the parent because people can relate and have experienced it as counselors.”

Meg McElwain is the daughter of the late Maryhardy Bays McElwain (BAE 63, MLS 81) and the late Joe Mitch McElwain (BA 63). Visit mitchellsfund.org for more information.

mitchellsfund.org