The Journey of Fletcher Fazenbaker
When Billy and Stevee Fazenbaker welcomed their daughter Fletcher in July 2022, they quickly sensed something was amiss.
“The moment she was born, her head was extremely large,” recalls Stevee Fazenbaker, 29, from Garrett County, Maryland. “She was immediately in critical condition.”
After conducting an MRI, doctors discovered that Fletcher had a brain tumor, which was so sizable that it caused her head to swell.
“The doctors told us, ‘We’re so sorry, but there’s nothing we can do. You should go home on hospice and enjoy your time,'” Stevee shares. “That kind of news is just devastating.”
A Challenging Experience
Billy and Stevee had been eagerly awaiting the arrival of their first child. Stevee had an uncomplicated pregnancy, describing it as “good all the way through.”
“I felt well the entire time, considered low risk,” she adds. Her last scan at 20 weeks showed that everything appeared normal.
During her subsequent prenatal appointments, everything seemed to be progressing smoothly, with no apparent issues. However, when her water broke, labor didn’t progress as expected, leading doctors to recommend a cesarean section, which Stevee agreed to. Upon Fletcher’s arrival, the couple noticed she looked different from typical newborns.
“It was shocking to see something was wrong,” Stevee recalls. “Initially, we thought perhaps it was hydrocephalus.”
Hydrocephalus can occur when fluid accumulates in the brain, which can cause an enlargement of the head. The medical team quickly took Fletcher to the neonatal intensive care unit, where they stabilized her. The next day, the MRI confirmed the presence of a tumor.
“That period felt incredibly heavy,” Stevee reflects.
About a week later, the family was told they could take Fletcher home for hospice care.
“They prepared us for a life expectancy of two weeks,” says Billy, 30. “They believed she would decline rapidly.”
The tumor was located near her brain stem, and doctors were worried it could press on it and eventually interfere with her breathing.
“It felt like a miracle to even bring her home,” Stevee shares. “We just tried to live our lives with her.”
The couple prioritized giving Fletcher experiences, believing her time was limited. On rainy days, they brought her outside so she could feel the raindrops. Despite medical opinions that she wouldn’t be able to suck, they offered her a pacifier and then a bottle, which she surprisingly accepted. Fletcher did several things the doctors had said she wouldn’t do.
“By the end of the first week, she was already showing some normal baby behaviors, which was quite astonishing,” Stevee notes.
After about a month, the family returned to the hospital for a check-up, hoping to gather more clarity about Fletcher’s situation.
They were told: “Just soak up this time. Sometimes, in a loving home environment, they might do better for a time, but unfortunately, there’s not much we can do.” The doctors didn’t even consider placing a shunt in her.
The parents had hoped that a shunt could help relieve some of the pressure from the tumor, but doctors believed she couldn’t survive the surgery.
“She was alive, and we cherished that. Yet, it felt like we were already grieving her,” Billy expresses.
Once Fletcher turned 2 months, they sought a second opinion from another hospital. They were disheartened by what they heard.
“The doctor basically told us it wasn’t worth the trip, agreeing with the previous hospital’s assessment, suggesting we focus on enjoying the time we had left,” Stevee remembers. “He said, ‘You wouldn’t be helping her; you would just be subjecting her to more procedures.’
Processing that was hard. They felt they were “literally begging for a miracle,” hoping for any sign of hope.
Then, when Fletcher was about 3 months old, their hospice nurse mentioned St. Jude Children’s Research Hospital. They quickly filled out an application for a second opinion, and just 48 hours later, got a call.
“It was exhilarating,” says Stevee. “They said, ‘I think we can help you. How soon can you come?'”
The couple traveled to Memphis and were optimistic after their meeting with Dr. Aditi Bagchi in November 2022.
She told them, “This will be a challenging journey, but I believe we can cure her.” The shift from being told to go home on hospice to receiving potential treatment was astonishing.
Dr. Bagchi identified Fletcher’s tumor as an infant-type hemispheric glioma, which she believed she could address.
Understanding Hemispheric Gliomas
Previously, the medical community viewed gliomas in infants like Fletcher as similar to more aggressive tumors in older children. However, recent research indicated that these infant tumors act differently. In 2021, they were reclassified as infant-type hemispheric gliomas.
“Recent studies over the last decade suggest that these tumors in infants have distinct characteristics compared to gliomas found in older individuals,” says Dr. Bagchi, a neuro-oncologist at St. Jude. “It’s a relatively new understanding.”
It became apparent that infant-type hemispheric gliomas often respond better to treatment than glioblastomas in older children. Genetic testing has further confirmed these tumors have different drivers.
Despite their rarity, there’s a lack of awareness surrounding these tumors among medical professionals, potentially leading to delayed diagnoses, as experienced by the Fazenbakers. Many parents hear similar heartbreaking news about their infants, much like the Fazenbakers did.
Dr. Bagchi emphasizes the need for increased awareness so community hospitals can refer patients to specialized children’s hospitals.
She advises, “You may not need to know the cure; you just need to reach out for help.”
Signs of these tumors can often go unnoticed until after the baby is born, though some prenatal scans may detect an unusually large head size. In some instances, babies may start with normal-sized heads but then experience rapid growth. For those not diagnosed right away, common symptoms can include:
- Weakness on one side of the body
- Difficulties with eating or drinking
- A prominent soft spot on the head
Treatment varies based on the tumor’s molecular characteristics seen during biopsies. Some tumors harbor genetic markers that respond to targeted therapy, while others may require chemotherapy. When successful, it’s often possible to surgically remove the tumor as it shrinks.
Delayed treatment can lead to developmental issues for many babies, yet their conditions can still be managed.
Dr. Bagchi asserts, “Early identification and appropriate treatment can save lives.”
In early 2026, she plans to launch a clinical trial aimed at establishing standardized treatments for infant-type hemispheric gliomas.
A Remarkable Recovery
When Fletcher met Dr. Bagchi, her head size was comparable to that of a 5-year-old. Doctors promptly scheduled surgery to place a shunt in her brain to help alleviate the fluid buildup.
Despite concerns about the thin skin on Fletcher’s skull, the shunt remained in place after surgery, though recovery was challenging.
Throughout that period, the family faced numerous frightening moments, but also rays of hope. The size of the tumor had caused Fletcher’s eyes to angle downward, hindering her ability to see her parents properly. Almost immediately after the shunt was inserted, she began to regain her vision.
“The day after the shunt placement is one we’ll never forget,” Stevee says, tearfully. “That was the first time she truly looked at us.”
By Christmas, Fletcher’s condition stabilized, allowing Dr. Bagchi to perform a biopsy, which confirmed the presence of an infant-type hemispheric glioma. The results showed that it could be treated with targeted medication, which her parents administered through a tube from her nose to her stomach. By March, the medication had halved the size of the tumor, and that month, she underwent surgery again.
“They successfully removed the entire tumor, which was just incredible,” Stevee reflects.
For the following seven months, Fletcher continued her targeted treatment. Wrapping up her treatment in October 2023 will mark two years since the completion. Since then, her scans have been clear, and she’s been flourishing. Although she does experience some developmental delays, she’s engaged in various therapies.
“She can now hold her head up independently,” Stevee proudly shares. “She’s also able to sit up with a bit of support.”
Fletcher is described as a “very sweet, very happy girl,” who sometimes showcases a bit of a feisty personality, especially during therapy sessions.
“She enjoys music and stories, loves being active, and has a fondness for the outdoors. Rain, wind, sunshine — she loves it all,” Stevee adds.
Through their experience, the Fazenbakers hope Fletcher’s story inspires others to seek second opinions for their children’s health issues. They’re also eager to raise awareness about infant-type hemispheric gliomas.
“I want to advocate for the belief in miracles because we are living proof,” Stevee states. “Fletcher is a remarkable example of defying the odds. I want her story to inspire good.”
