Meet Jamie, Queen of the Krewe of Wonder: A Journey Filled with Unconditional Family Love and the Unwavering Care of Children’s Hospital New Orleans

Meagan and Jared Taylor adopted their third child, Jamie, just days after she was born in April of 2019. Jamie's toddler years blossomed with the typical laughter, curiosity and adventures of early childhood.  

But by the age of two, something seemed to change. Jamie’s usually animated spirit started to get weighed down by physical challenges. 

“We noticed she was having difficulties,” recalls her mother, Maegan. “Although she was able to crawl, climb, walk and meet other milestones, she started to get more and more clumsy – running into things or falling over. Even some of our close family and friends were starting to notice.” 

The family calls Raceland, Louisiana – a small town roughly 75 minutes southwest of New Orleans – their home. Although advanced pediatric care is not a robust offering in their community, the Taylors were determined to seek the best care for Jamie, no matter where it led them. 

“Drawing from my years as a home health nurse, I knew Jamie required specialized attention,” said Maegan. “That’s why we took the initiative to bypass the primary care clinic and head straight to Children’s Hospital New Orleans on our own. We believe their comprehensive pediatric services were the best possible option for our daughter.” 

An unexpected diagnosis 

​It wasn't long after arriving at the Children’s Hospital New Orleans emergency room that an MRI scan revealed the unexpected: a juvenile pilocytic astrocytoma – a rare, benign childhood tumor – was situated close to Jamie's optic nerve and pituitary gland. This type of tumor, although slow-growing, was the cause of Jamie's lack of coordination and the other neurological symptoms she displayed. 

The diagnosis was a huge shock to the Taylors. “It was honestly the last thing we expected. She was only two years old. We couldn’t believe it,” Maegan recalls. 

The weight of the diagnosis was counteracted by the swift, compassionate response of Jamie’s multidisciplinary care team. That very same night, Jamie received prompt attention from the neurosurgery team. Understanding the seriousness of the situation, they determined that Jamie needed a shunt placed in her brain to drain the accumulating fluid. 

With precision and care, Jamie underwent this critical procedure, just hours after arriving at the hospital. Following the surgery, she was monitored in the pediatric intensive care unit for a week to ensure her well-being and recovery. 

Juvenile pilocytic astrocytoma, the type of tumor found in Jamie's case, is known to grow slowly and often occurs in the cerebellum – the part of the brain that controls balance, coordination, and movement. In Jamie's situation, the tumor was located near vital structures that are responsible for vision and hormonal regulation. Although this type of tumor is benign, its positioning and potential for growth can lead to significant neurological symptoms if not managed promptly. 

Jamie’s individualized treatment plan 

A unique care plan was tailored specifically for Jamie. An immediate goal was to monitor the growth of the tumor while also providing her with physical therapy to address her current symptoms. As part of the plan, Jamie would undergo regular MRI scans and routine check-ups, ensuring the tumor remained stable and did not interfere with her essential brain functions. 

In addition, the medical team and the Taylors concurred that chemotherapy was essential, despite the complexities surrounding such treatment for a child as young as Jamie. Chemotherapy is a powerful treatment approach that utilizes drugs to destroy or slow the growth of cancer cells. It's vital in cases like Jamie's, where the goal is to shrink the tumor and prevent its progression, ensuring the best possible health outcomes. 

To facilitate this, Jamie needed a port – a small implantable device connecting to a vein, designed to ease the drug delivery process and eliminate the need for constant needle pricks.  Dr. Dana LeBlanc, her pediatric oncologist, explained that “the port is particularly beneficial for young patients undergoing prolonged treatments. For Jamie, this means a more comfortable experience during her chemotherapy sessions.” 

The day Jamie's port was implanted proved daunting for the Taylors. The sight of their daughter prepped for months of chemotherapy truly drove home how serious her condition was. Yet, the hospital staff's expertise and warmth gave the family confidence in Jamie's care. 

Throughout this ordeal, the Taylors clung to hope. Their faith was bolstered by their trust in Children's Hospital New Orleans. They were confident that with the hospital's support, Jamie would return to her vivacious self. 

“Every child’s journey through treatment is unique,” Dr. LeBlanc added. “What remains consistent is our unwavering commitment to ensuring their well-being and returning them to a life filled with the joys of childhood. The neurosurgery and oncology teams collaborated closely, ensuring a comprehensive and cohesive treatment plan.” 

In addition to her neurology and oncology care teams, Jamie also consulted with a team of specialists from various disciplines. Dr. Alejandro Leon, an ophthalmologist, ensured her vision remained unaffected, while Dr. Dania Felipe Ramirez, an endocrinologist, monitored her hormonal health. Having a multitude of specialists dedicated to Jamie's health, all available under one roof at Children's Hospital New Orleans, emphasized the hospital's holistic approach and reinforced the family's belief that they were in the best possible hands. 

Children's Hospital New Orleans: Neurosurgery and Hematology Excellence 

• The specialized neuroscience center offers comprehensive expertise, catering to the distinct needs of neurosurgery, neurology, and rehabilitation. 

• The pediatric neurosurgery team applies tailored approaches that consider both the physical and emotional challenges unique to younger patients. 

• The multidisciplinary hematology team stands as the largest group in the Gulf South, and they proudly treat over 1,100 children annually using state-of-the-art treatments. 

• The oncology team is specially trained to care for the unique needs of children and work alongside a medical staff of more than 200 pediatric specialists, including pathologists, radiologists, oncology surgeons and neurosurgeons. 

A positive outlook ahead 

Two years since the diagnosis and the beginning of her chemotherapy regimen, Jamie's journey has been one of resilience and triumph. Although there have been some ups and downs, regular MRI scans continue to trend toward good news: her tumor has shown signs of shrinking. Jamie has regained her coordination, playing and exploring her world with the energy typical of children her age. 

“When you see her playing and laughing with her older siblings, it's easy to forget the challenges she's faced,” said Jamie’s mom. “Remarkably, despite undergoing intensive chemotherapy, she has displayed incredible strength, rarely falling ill or experiencing severe side effects. It's a testament to both Jamie's strength and the quality of the care she received.” 

Once fearful and uncertain, the Taylors now have renewed aspirations of a promising future for Jamie. They are filled with hope that she can achieve anything she sets her mind to, strengthened by the belief that her medical condition is under control and will hopefully remain stabilized, if not entirely cured. They hope that Jamie avoids the need for further surgery and faces no additional deficits. 

Maegan often reflects on their journey, and if she had to give advice to other parents faced with a similar situation, she'd emphasize the importance of trust and hope. "Never lose hope and always trust the medical professionals,” she added. “Being proactive, asking questions and seeking out the best care are crucial. For us, the Children’s Hospital New Orleans team was that beacon of hope and excellence.” 

As Jamie continues to grow and thrive, her story serves as a beacon of light for many families, showing that with the right support, love and medical care, even the toughest challenges can be overcome. The Taylors look forward to the many milestones ahead. 

To learn more about the Children’s Hospital New Orleans neurosciences services, visit www.chnola.org/services/neurosciences. For information about the Center for Cancer and Blood Disorders at Children's Hospital New Orleans, visit www.chnola.org/services/hematology-oncology. To learn more about our giving krewes, visit https://www.chnola.org/giving-at-childrens-hospital/giving-krewes/.