MacKenzie Maddry has changed a lot in two and a half years. While it's normal for any teenager to hit certain milestones, Maddry has grown in ways most could not imagine since her cancer diagnosis in 2020.
“Appreciate things more, family time,” the 16-year-old said softly about how her diagnosis has changed her, sitting in the waiting room for her cardiology appointment at Arkansas Children’s Hospital (ACH) in Little Rock May 31.
Before cancer, the then 14-year-old was active in soccer, track and cross country and excelled in playing viola, always exuding strength and perseverance. It's an attitude that has served her well as she's battled cancer and now end-stage heart failure.
Just as the diagnosis changed her life, it will also change the lives of other pediatric patients in the state. MacKenzie is the first pediatric patient in Arkansas to go home on a ventricular assist device attached to her heart instead of staying in the hospital.
"Being the first pediatric patient to go home on an LVAD in Arkansas is pretty amazing. At first, we didn't know if we were going to be able to leave the hospital or Little Rock in general. But we were able to train people where I'm from in Bella Vista so that I could go home," MacKenzie said. "That means a lot to me because I get to spend time with my family, and I won't be missing out on family traditions anymore."
A VAD helps a person's heart circulate oxygenated blood throughout the body while they await a heart transplant or for long-term support. MacKenzie's LVAD device assists the left ventricle in pumping blood. Arkansas Children's Heart Institute placed more than 65 pediatric VADs, including SynCardia, Berlin Heart® and the HeartMate 3™, the one MacKenzie's has.
Allowing MacKenzie to leave the hospital requires special training for local emergency rooms wherever she is — at home or while traveling.
“It’s great for her because she does better at home. She does better mentally at home. She’s allowed to do her physical therapy, see her pets and her family,” said Ken Knecht, M.D., a pediatric cardiologist and medical director of the heart transplant and advanced heart failure program at Arkansas Children’s Hospital in Little Rock and a professor of pediatrics at the University of Arkansas for Medical Sciences (UAMS). “It shows that here within Arkansas, we can work with community providers to take care of these complex and complicated patients even at a distance without having to be specifically here at Arkansas Children’s Hospital in Central Arkansas.”
Arkansas Children’s multidisciplinary care for MacKenzie stretches far beyond ACH, to Arkansas Children’s Northwest (ACNW) in Springdale and in partnership with other medical teams to provide her with unmatched care.
MacKenzie, daughter of Mark and Dori Maddry, is a rising junior at Bentonville High School.
"What I love most about McKenzie is that she's a loyal friend; previously, when she was in sports, to all of her teammates. She seems to always have that go-to personality. And then she's just super awesome all the way around," Maddry said.
But in October 2020, a painful bump formed on MacKenzie’s leg. Initially thinking it was a sports injury, they consulted their primary care physician and, after a few visits, were referred to ACH in December. Following blood work, CT and bone scans and a biopsy, the family learned on Dec. 17, 2020, that MacKenzie had osteosarcoma, bone cancer.
"It was hard when I found out I had cancer, but I had family that had gone through cancer, so I kind of looked up to them, and they kind of mentored me through. There were times I was scared when I didn't know the future, the unknown, how procedures might happen," MacKenzie said. "People like child life would come and talk to you and explain things. The doctors would reach out to coordinators that have the (VAD) device in hand so you can see it for yourself and explain it to you even better. Which was a big help for me."
Her mother added, "It was a shock for all of us. No one thought our family would be affected by childhood cancer."
She started cancer treatment Dec. 23, making it back home on Christmas evening. Over the next nine months, she had 21 cycles of chemotherapy treatments, using three IV-administered medications, under the care of David Douglass, M.D., a pediatric oncologist at ACH and assistant professor at the University of Medical Sciences. Treatments averaged three to five days in the hospital.
"It was found to be osteosarcoma, which is one of the most common of the two bone tumors that we typically see in pediatrics. I say typically, they're still both very rare cancers. There are only about 450 children diagnosed per year in the United States with osteosarcoma. So, even though we see it a fair amount here, it's a relatively rare tumor," Douglass said, adding osteosarcoma will typically appear around the knee or tibia, the bone just below the knee.
The cancer was isolated to her left femur. Though chemo killed most of the cancer, in April 2021, she had part of her femur removed and replaced with a cadaver bone by Corey Montgomery, M.D., an orthopedic oncologist at ACH and associate professor of orthopedics at UAMS. He is the only orthopedic oncologist in Arkansas, which means a surgeon who manages patients with bone tumors. Montgomery is the only surgeon in the state who can perform this type of surgery.
MacKenzie’s family opted for the cadaver bone to preserve her joint rather than replacing the portion of the removed bone tumor with a metal or plastic prosthesis, something that would have permanently impacted her flexibility.
"We remove the cancerous bone, and we find a match, meaning that there's a special company that will identify a donor bone, and then we're able to match the size and length as close as possible to MacKenzie's bone," Montgomery said. "Then I take that bone and fashion it and attempt to size it to fit as best possible in MacKenzie's bone, and then we use a plate and screws to reconstruct that area."
MacKenzie has had several surgeries on her leg.
Montgomery said it might take another year for her to regain full motion because of a few setbacks in recovery. He said the bone will take several years to incorporate into her body fully. Starting this past spring, MacKenzie and her family take nightly walks to build her strength.
While her treatments began at ACH, MacKenzie began receiving chemo at ACNW in May 2021, closer to her Bella Vista home. She finished her treatment four months later that September.
As a result of rare chemo side effects, MacKenzie became a heart patient at ACH.
MacKenzie was admitted to CVICU at ACH for a couple of weeks starting in October 2022, where her family learned she had dilated cardiomyopathy. Knecht explained that her heart was incapable of producing enough blood flow on its own, leading to end-stage heart failure. MacKenzie would need a heart transplant.
Knecht said the team weighed several factors when choosing her to go home on an LVAD, assisting her left ventricle, including her age and size, given that younger pediatric patients are sometimes too small to tolerate an adult-sized VAD and her overall mental well-being.
MacKenzie’s LVAD was surgically implanted in November 2022 by Brian Reemtsen, M.D., director of the Arkansas Children’s Heart Institute, chief of cardiovascular surgery at ACH and professor of surgery at UAMS, and Lawrence Greiten, M.D., an ACH pediatric cardiothoracic surgeon and assistant professor of surgery at UAMS. She went home in February 2023. Patients must be in cancer remission for two years before being placed on the heart transplant list. She will have LVAD until she receives a new heart.
"For patients such as MacKenzie, whose ventricles are incapable of producing enough force to push blood forward, this device takes over and does that for them," Knecht said. "This particular device is the most common one used, realizing that they're used much more commonly in adult populations than pediatric populations. But it takes over for the work that her heart is incapable of doing on its own."
MacKenzie's LVAD has a battery pack outside her body, housed in a backpack. A small tube is connected to the pump assisting her left ventricle and attaches to her battery pack through a small opening in her side. MacKenzie admits it "feels kind of crazy" to have an LVAD, but it has become part of her, literally and style-wise. She decorated the outside of her battery backpack with googly eyes and a blue mustache because "I didn't want it to be so clinical, and I wanted it to have some personality, have some fun to it."
For MacKenzie to live safely at her Bella Vista home, about a six-hour round-trip drive to ACH, the VAD team trained her family and area medical staff should an emergency arise. It included in-person education to understand the meaning of the various alarms on her LVAD, how to stabilize her and how to immediately get in touch with her ACH VAD team, which consists of five to 12 people.
"Medical providers are taught to take a pulse and check the blood pressure, and because she has a continuous flow device, the typical methods we use to do that aren't available," Knecht said. Instead, her pulse is checked using a blood pressure cuff on her arm, slowly deflating it while a doppler is placed at the brachial artery.
The team even connected with medical personnel in Kansas City so MacKenzie could safely travel to watch her brother play soccer.
Nationally, it is no longer rare for a pediatric patient to go home on a VAD, but it is infrequent, Knecht said.
"It is a population which is occurring more often, but most certainly not universally available," Knecht said. "It depends on having a good medical team that can provide care for her as well as the outreach of the community. It relies upon the patient and family because they are heavily involved in education, as well as having to deal with the complexity of this. I will say that a lot of the programs that do so require you to stay within the local area. I think it's huge for us to be able to actually get her home."
Amid the struggles and heartbreak of MacKenzie's journey, there have been moments of triumph thanks to the staff at Arkansas Children's. Thanks to the ACH music program, she learned how to play the ukulele during chemo treatments, a meaningful endeavor since she stopped playing the viola after her diagnosis.
After MacKenzie spent about two months in the ACH CVICU, her care team coordinated a field trip for her to the State Capitol in December, soaking up precious time outside the hospital walls. During a particularly rough day of chemo at ACNW, the nurses decorated her entire room. They held a dance party to cheer her up. When she got hooked watching the hit Broadway play-turned movie "Hamilton," "the nurses, they just sang along with me, and they made me feel at home," she said.
To say thank you, the family made #TeamKenzie T-shirts and bracelets for some of her care team. While wearing his bracelet, Douglass touted MacKenzie's "quiet strength."
"I don't think I've ever heard her complain once, despite all that she's been through. Her mom's been at her side through the whole process, and her family's just been an amazing support," Douglass said.
Knecht said MacKenzie is a “joy to talk to” and is steadfast in her positivity.
"She is a great example of the promise of the different technologies we use taking care of these sick patients, and she's taken advantage of that. But I think she's also a great example of how well you can do in spite of challenges," Knecht said.
Staying strong in spite of challenges is exactly why Montgomery gave her the nickname “Rocky,” after the famed Sylvester Stallone movie character.
"She's had a rough two, three years, and regardless of what she's encountered, she always keeps fighting. And I think I was visiting her and her mom in the ICU after the heart issue, and just something came to my mind as 'Rocky,'" Montgomery said, adding he encouraged her to watch 1976's "Rocky." "Maybe several weeks later, her and her mom watched 'Rocky' together. I said, 'You know the significance of that?' And she's like, 'No.' I said, 'You're a fighter. Regardless of what life throws at you, you continue to fight, and I'm so happy to be participating in your care.'"
Beyond the expert medical care, the unprecedented compassion of the staff set Arkansas Children’s apart for the Maddry family.
"I would recommend Arkansas Children's to any of the families, and I do often, just because of the love and care of the doctors and nurses. They all go above and beyond. What is devastating news for a parent to hear, "Your child has cancer' or 'Your child has end-stage heart failure," they are right there for you," Dori said.
For MacKenzie, she hopes to get a heart transplant, live a healthy life and give back by becoming a nurse in cardiology or hematology.
“I wanted to pay it forward because all these nurses have taken care of me, and I want to take care of others,” MacKenzie said.
But for today, she is simply thankful.
"I would just like to say thank you to all the nurses and doctors and everyone in between that have been there to help me through this journey. They've really helped me out a lot," she said.