'Mighty Makenzie' Refuses to let LCH, a Rare Cancer, Steal Her Joy or Slow Her Down

By Gina Best

Asked what makes her mighty, Makenzie Chapa flexes her biceps and flashes a smile.

“I have muscles,” she says with an upward tilt of her chin.

Those who meet the precocious 7-year-old would no doubt agree she’s strong. But so much more radiates behind the eyes of “Mighty Makenzie,” a nickname given by family and friends who have rallied around her since last year’s diagnosis of Langerhans Cell Histiocytosis (LCH), a rare cancer in which immune cells attack parts of the body.

Makenzie’s true superpower may lie in the unharnessed joy she emits as she bounces from a chair to grab something off her grandma’s desk, to peek at her baby sister inside a stroller, to dash down the hall and back, all the while peppering nearby adults with one-liners.

Besides showing what it means to be truly brave and persevere, “she has taught me about finding joy in the little moments, even when things are really hard,” says her mom, Amanda Parsons.

 “I’m thankful she has not let it affect her as hard as I probably would if I were her. I’d be a mess,” Parsons says. “But she’s selfless, always thinking about others, even when she’s going through so much.”

In February 2021, Makenzie complained of back pain, and Parsons, who was pregnant at the time, wondered if her daughter was mimicking her own complaints. But the pain became so severe, Makenzie would wake in the middle of the night crying. And at one point, the severity of it caused her to fall during a gymnastics class. Parsons took her daughter to an urgent care clinic, but X-rays of her spine didn’t show a problem.

Parsons, a physical therapist assistant, then took her daughter to Julee Morrow, M.D., her longtime Cook Children’s pediatrician, who referred her to an orthopedic specialist for tests. The specialist wanted to wait six weeks before running imaging tests on Makenzie, suggesting it was probably muscular, the most common cause of children’s back pain. 

But Parsons’ gut told her otherwise. Her daughter’s pain seemed too extreme. Again, she contacted Dr. Morrow, who ordered an MRI, which Makenzie received a few weeks later.

On April 2, 2021, less than an hour after the MRI, Parsons answered a call from the pediatrician’s office. She was told to keep Makenzie’s head as still as possible and get her to Cook Children’s Medical Center right away. The MRI results revealed a mass on her C-7 vertebra, near the base of the neck, which had caused the vertebra to collapse. It was critical to keep Makenzie’s neck and back stable.

“It was like a movie moment. I just dropped everything in my hands and ran out of the store,” says Parsons, who had been shopping while her mother watched Makenzie. “I called my mom, bawling, and asked, ‘Where’s Kenzie right now?’ She told me, ‘She’s riding her bike.’ She literally had just taken her training wheels off a week before this happened. So, I start yelling, ‘Get her off! Get her off!’”

Makenzie’s grandma, Bridget Page, R.N., is director of Occupational Health Services at Cook Children’s. She wasn’t sure what was happening when she answered her daughter’s frantic call.

“I was just sitting on the driveway watching Makenzie ride her bike,” Page says. “I could tell Amanda was scared.”

And with good reason. Makenzie was admitted into the medical center within an hour of having the MRI.

“I was expecting to come in, get something like a neck brace to keep her safe, then go home and figure out the next steps,” Parsons says. “When the doctor came in, she said they were suspicious about what was going on and thought it might be something called—she said it so fluently, I’ll never forget—Langerhans Cell Histiocytosis (pronounced lang-gr-haanz sel hi-stee-ow-sai-tow-suhs). And I was like, was that English? What did she say?

“Then she said, ‘So, that means you’re going to be here for a little while,’” Parsons says.

LCH affects one in 200,000 people, mostly children, but has a high survival rate. Located in the skin, Langerhans cells fight infection in the body. But with LCH, the patients produce too many of the cells, which in turn, attack parts of their own bodies.

Makenzie, who was put in a cervical neck collar, spent that Easter in the hospital, where she underwent several tests, including a PET scan to determine if she had other tumors. Fortunately, it appeared she only had the one on her C-7 vertebra. After two attempts to biopsy it, a LCH diagnosis was confirmed, and Makenzie was moved to oncology for treatment.

She immediately started chemotherapy but didn’t respond well to the first dose, her mom says. About a month later she received a second dose, which her body seemed to handle slightly better. Two weeks later, in June, Makenzie received a third round of chemo just before getting another PET scan.

“This scan would tell us if the chemo was getting anything. It had only been two cycles, so we weren’t expecting a whole lot of difference,” Parsons says, “but it was a world of difference. The chemo had worked at shrinking her tumor. But, unfortunately, the tumor was literally holding her spine together.”

The LCH had all but disintegrated her C-7, and the shrinking tumor caused severe misalignment of her spine, putting Makenzie at risk for spinal cord trauma. Surgery to fuse her vertebrae was needed, but because of chemotherapy, her blood count levels were too low.

It was too risky. Spinal surgery would have to wait.

Halos in Motion

Makenzie—who at the time was violently ill from the third round of chemo— needed a halo ring implant immediately to keep compression off her spinal cord, Parsons says, adding, “If she’d moved a certain way, it could have been catastrophic.”

Makenzie was admitted into Cook Children’s infusion clinic where she received fluids to control the chemo side effects. The next day, on June 10, 2021, Makenzie underwent surgery for halo placement. The procedure uses two rods and four pins implanted on either side to keep the head and neck stationary and stabilize the spinal cord.

It was a difficult transition for the energetic girl who just a few months earlier had enjoyed jumping on the family’s backyard trampoline, playing soccer and learning gymnastics. But doctors, nurses, chaplains and child life specialists at Cook Children’s helped her granddaughter through some dark days, Page says.

For instance, when she heard Makenzie was anxious about the halo surgery, child life specialist Erin Loftus worked with a surgical nurse to fashion a doll wearing a halo brace to show Makenzie what would happen in surgery and how the halo would work, Page says.

“Erin sat there for about an hour showing her the doll, talking about what Makenzie was afraid of and what the surgeons were going to do,” she says. “When we walked back into her room, Makenzie was all smiles. She had perked up.”

Meanwhile, genetic testing showed Makenzie had a rare mutation of the BRAF-R506 gene, which may play a part in LCH. The family was told about a new treatment that targets that particular mutation.

“They asked if we wanted to try it. It’s an inhibitor medicine, basically like a daily chemo pill that doesn’t have the side effects that infused chemo does,” Parsons says. “We said absolutely. Anything to keep her from going through what she went through. So, she has been taking that pill every morning since last July and seems to be responding to it.”

Before she could have spinal surgery, though, the chemo effects needed to be monitored in her body, as well as the new medication’s potential effects. Surgery was set for September 2021, but with another surge of COVID hitting the area, it was postponed. At the end of October 2021, surgeons were able to fuse Makenzie’s C-5 through T-2 vertebrae to stabilize her spine.

As she healed, Makenzie continued to wear the halo until the end of December. Despite some difficult days, she made it through almost seven months of wearing the device, something typically worn no more than 12 weeks, her mom says.

That doesn’t surprise Makenzie’s grandma, though. Makenzie will not be defined by her medical condition, she says.

“She has taught me that even on your darkest day, you can find some glimmer of happiness. Even if you’re facing trials in life, you can find happiness and not dwell on what’s going on with you,” Page says. “You accept it and keep moving. And that’s what she does. She might have a little pity party for a day or two, and then she’s like, ‘Oh, well,’ and she just keeps going.”

Two Feet on the Ground

With targeted therapy, Makenzie’s long-term prognosis is excellent, says Anish Ray, M.D., her pediatric oncologist at Cook Children’s.

“She has been able to be playful and active, free of chemotherapy-related severe toxicities,” Dr. Ray says.

Makenzie will continue to be monitored for LCH, says Parsons, who joined an LCH community on Facebook to keep up with treatments and research. In April, she also rallied friends and family to raise $10,615 for The Blast, a Cook Children's event that supports research, clinical trials and treatments for patients and families at Cook Children’s Hematology and Oncology Center. Mighty Makenzie’s team also was recognized as the highest new fundraising team by The Blast.

 “We’ll always be on the lookout for it,” Parsons says, adding Makenzie has an upcoming PET scan in August. “I don’t think they’ve had anyone on this medicine long-term, yet, so we’ll find out if it’s something she can be on for a long time or if we have to figure something else out.”

Free of halo traction and of chemo side effects, Makenzie is back on the move, restricted only by “two-feet-on-the-ground” protocol. She hopes to go back to in-person school as a second-grader in the fall, her mom says.

Makenzie enjoys playing with her best friend, Bradley. She draws and paints. And she loves math, especially learning about money, she says with a quick grin.

She also is learning to play the acoustic guitar, electric guitar and keyboard. Her favorite band to listen to? “Queen,” Makenzie says without hesitation, “because they’re funny.”

Ashraf Mohamed, M.D., the first pediatric oncologist at Cook Children’s who saw Makenzie, continues to check on her as she navigates LCH and the complications around it.

Her toughness and willingness to fight the disease is inspiring, Dr. Mohamed says. In almost 30 years of practice, he has seen only a handful of LCH cases in which the spine was affected.

“The decision to put her in a halo, which is a really major thing for a child like her, I couldn’t imagine how she would tolerate that,” he says. “Being in this big halo, which is really heavy, and still being able to play and do stuff, that was really amazing.”

“The key thing that sticks in my mind when I think about Makenzie is her being so smart. She knows what’s going on. She knows how to ask questions and advocate for herself. That’s really amazing for 7 years old,” Dr. Mohamed says. “Each time I see her and see the big smile on her face, I tell her, ‘You make my day.’ She basically makes the people around her happy.”