Avery’s story: Overcoming medulloblastoma

In the summer of 2018, Danielle and Blake Alfortish received news that would change the course of their lives. Their seven-year-old son, Avery, had been experiencing concerning symptoms, including periodic headaches and vomiting. After ruling out a virus, Danielle took him to his pediatrician, Joshua Mizell, MD, who carefully listened to her concerns and ordered an MRI. The results revealed that Avery had a medulloblastoma. 

Medulloblastoma is a malignant brain tumor that originates near the brainstem, in the cerebellum. This fast-growing tumor can spread to other parts of the brain and spinal cord and requires immediate medical intervention.  

Due to the quick action taken by his parents and pediatrician, Avery was quickly admitted to Children’s Hospital New Orleans, where he underwent neurosurgery in June 2018 just a few days after his diagnosis, with Jerome Volk, MD as the primary neurosurgeon.  

The pediatric neurosurgery team was able to successfully remove Avery's tumor. Following the surgery, however, Avery experienced significant challenges: his balance was off, he couldn't hold his head up when he first tried to walk, he lost the ability to speak for three weeks, and his fine motor skills were affected. Avery was diagnosed with posterior fossa syndrome (PFS), a condition that can occur after surgery in the cerebellum. PFS is characterized by a collection of symptoms, including reduced or absent speech, irritability, low muscle tone (hypotonia), unsteadiness and reduced coordination (ataxia), and difficulty coordinating voluntary movements. 

To alleviate the symptoms of his new diagnosis, Avery underwent rehabilitation at Children’s Hospital New Orleans, staying there for a month. The rehab team was exceptional, providing him with speech therapy, physical therapy, occupational therapy, and music therapy. Avery also started radiation and chemotherapy to treat the cancer.  

In August, just two months post-diagnosis, Avery was able to return to school, and the socialization, friendships, and engagement in school activities helped keep his spirits high despite the medical challenges he was facing. 

"We would check him out early for his radiation treatments, and the only time he really missed school was for chemotherapy,” Danielle recalled. “Despite everything, he was a trooper. He didn’t need naps at school and handled it all amazingly well." Finally, after several months, Avery drastically improved and his PFS was nearly indistinguishable. 

After completing radiation therapy, the next step for Avery was continuing chemotherapy for a year. As expected, this phase was challenging, and he experienced significant side effects, including substantial weight and muscle loss. Despite these difficulties, he managed remarkably well and never required a feeding tube.  

Avery completed chemotherapy in August 2019, and since then, there has been no evidence of recurrence of his medulloblastoma. Danielle said that her family will forever be grateful to the care they received at Children’s Hospital New Orleans, and especially for Avery’s medical team, including Dr. Volk, hematologist-oncologist Dana LeBlanc, MD, and endocrinologist Arlette Soros, MD, all of whom went above and beyond to deliver expert, personalized, and compassionate care to her son.  

"Treating medulloblastoma is a complex and multi-faceted process,” Dr. Volk said. “It involves a combination of surgery, radiation therapy, and chemotherapy. The goal is to first surgically remove as much of the tumor as possible while minimizing damage to surrounding brain tissue. Radiation therapy and chemotherapy are then used to target any remaining cancer cells and prevent recurrence. Throughout this process, we closely monitor the patient's progress and adjust treatment as necessary to manage side effects and support overall health. It's a challenging journey, but with a multidisciplinary approach, we aim to achieve the best possible outcomes for our patients. Avery is such a special kid and has a special story, and it has been an honor to be part of his medical team." 

"The teams at Children’s Hospital New Orleans have all been incredible,” Danielle said. “Dr. Volk even completed a 5K with Avery just as he was finishing up his chemotherapy, and the hospital’s late effects clinic has been phenomenal at ensuring Avery gets all the follow-ups he needs.”  

Today, Avery continues to see specialists and undergoes routine surveillance monitoring and imaging at Children’s Hospital New Orleans, but he is thriving. He recently completed 7th grade at Holy Cross School, is a member of the National Honor Society, and participates in the cross country and track and field teams. He adores his younger siblings, Alec and Andi, and lives a full and healthy life. 

"When you look at him, you would never know what he's been through,” Danielle said. “He still sees many specialists, since his hearing, kidneys, and endocrine system were affected, and there will be lifelong challenges he has to deal with because of the treatment, but he takes it all in stride. He’s such a resilient kid, and we’re so incredibly proud to be his parents." 

To learn more about the Hematology & Oncology services available at Children’s Hospital New Orleans, visit https://www.chnola.org/services/hematology-oncology/.

To learn about the neurosurgery services at Children’s Hospital New Orleans, visit https://www.chnola.org/services/neurosciences/neurosurgery/.