Toddler with Langerhans cell histiocytosis (LCH) finds expert care close to home at Manning Family Children's

For Molly and Jordan, every decision they made for their daughter Blakely came down to one simple goal: finding the best possible chance for a healthy future.

Today, 20-month-old Blakely is in remission from a rare cancer called Langerhans cell histiocytosis (LCH). As she finishes her final months of treatment at Manning Family Children's in New Orleans, she is doing what toddlers do best. Blakely walks, laughs, chases after her big brother Beau, and fills every room with smiles.

Looking at her now, Molly said, no one would ever know she had been fighting cancer for most of her short life.

A mother's instinct said something wasn't right

Molly's pregnancy was uncomplicated, and Blakely met all her early developmental milestones. But when she was about 5 months old, Molly noticed blood in her daughter's diapers. Doctors initially believed she had a milk allergy, and the family tried three different formulas over the next several months.

Still, Molly couldn't shake the feeling that something more serious was happening.

"I knew something was wrong," she said. “I’m not a doctor, but I knew we had to stay focused on finding out what was really going on.”

Additional testing eventually led to a colonoscopy to examine the inside of the large intestine. The procedure, which uses a small camera, revealed an unexpected diagnosis.

Blakely had cancer.

More specifically, she was diagnosed with Langerhans cell histiocytosis (LCH), a rare disorder in which abnormal immune cells grow uncontrollably and damage healthy tissue. Although LCH is not always classified as a traditional cancer, it is treated by pediatric hematology and oncology specialists because the abnormal cells behave similarly to cancer cells.

Blakely's disease affected both her colon and skin. Testing also found that her LCH cells carried a genetic change known as the BRAF V600E mutation. This mutation can cause abnormal cells to grow and survive longer than they should.

The diagnosis was overwhelming,” Molly admitted.

When you hear the word ‘cancer,’ people actually hear ‘death,’" Molly said. "We were worried she was going to die."

As Molly and Jordan learned more about LCH, they discovered that although the disease is extremely rare, outcomes for many children are very encouraging with the right treatment.

Finding specialized LCH care close to home

The family began researching LCH specialists across the United States.

“As it turns out,” Molly said, “the very best care we could possibly want for Blakely was right here in our own backyard at Manning Family Children’s.”

Justin Farge, MD, a pediatric hematologist-oncologist at Manning Family Children's who cares for children with rare blood disorders, cancers, and conditions such as LCH, works closely with nationally recognized treatment approaches for children with the disease. After meeting him, the family transferred Blakely's care to Manning Family Children’s right away.

Children with rare diseases such as Langerhans cell histiocytosis often benefit from care at specialized pediatric centers where physicians have experience treating uncommon conditions, follow the latest evidence-based treatment approaches and collaborate with a multidisciplinary team dedicated to caring for children with cancer and rare blood disorders.

Molly says she immediately knew they had found the right physician. "We love Dr. Farge," she said. "He makes a big deal seem manageable in a comforting way."

More than anything, she appreciated how carefully he explained every decision regarding Blakely’s care.​

"He was explaining everything to us in such detail. But honestly, I didn't know what any of it meant. I asked him to explain it like I was 5 years old. He did, and I understood everything. He took his time with us. We never felt rushed. He was so calm and collected that it made us feel calmer,” Molly said.

Specialized treatment for Blakely’s LCH

Blakely's treatment includes 12 monthly cycles of chemotherapy. During each cycle, she receives intravenous chemotherapy over five consecutive days. Although each infusion lasts about two hours, the family typically spends most of the day at the hospital during each treatment.

Having that care available close to home has made an enormous difference.

"Manning Family Children's is the best hospital ever," Molly said. "I am so thankful to have the best care right here in our backyard."

Throughout treatment, Blakely has been cared for by a multidisciplinary pediatric oncology team, including physicians, nurses and other specialists experienced in treating children with cancer and rare blood disorders.

She says every member of the care team has helped make an incredibly difficult experience easier. "The nurses are Blakely’s best friends. She truly enjoys getting to see them and is all smiles when we get there.”

Watching the nurses care for every child has also left a lasting impression, Molly added. "They make Blakely feel special and like one of their own. And I see them like that with every child."

A happy toddler with a bright future

As Blakely moves toward the end of her chemotherapy treatment plan, her most recent scans show she is in remission. The remaining treatments are designed to complete her full course of therapy and reduce the risk of the disease returning.

Perhaps most remarkable, she has experienced none of the serious side effects that her parents feared.

“She has not lost her hair. She continues to laugh constantly, loves being outdoors and follows her older brother everywhere he goes,” Molly said. "She is not even 2 yet and has no idea what she's going through," Molly said. "She's just a happy little girl."

For Molly, one lesson stands above all the others: Trust your instincts.

Her determination to keep searching, combined with expert care from Dr. Farge and the multidisciplinary pediatric oncology team at Manning Family Children's, helped transform one of the family's darkest moments into a story filled with hope.

Today, the Nami family is focused on something wonderfully ordinary: watching Blakely grow up healthy, happy and ready to enjoy the childhood every family dreams about.

About the Center for Cancer and Blood Disorders at Manning Family Children's

This National Childhood Cancer Awareness Month, we're proud to share stories that show what's possible when children have access to world-class care close to home. At Manning Family Children's, we don't make claims—we show proof. We treat more Louisiana kids with cancer than all other facilities combined, and our Center for Cancer and Blood Disorders is ranked No. 48 nationally in U.S. News & World Report's 2026–2027 Best Children's Hospitals rankings. We are home to Louisiana's first and only certified pediatric CAR-T cell therapy program and the state's only FACT-accredited pediatric bone marrow transplant program. As a member of the Children's Oncology Group, we're also actively conducting research at the forefront of childhood cancer care.

For 70 years, we've run to what others hesitate to face, so children across the Gulf South can receive nationally ranked care without leaving home, regardless of ability to pay.

Learn more about our nationally ranked program here.