Our Family’s Experience With JNA
I’m Paula Nosrati, and I want to share our family’s JNA journey in hopes that I can provide answers and resources for other families going through a similar experience. In May of 2019 our family was living a seemingly normal life in sunny Los Angeles. My husband, Ramtin, owned a successful real estate development business, and I was a stay-at-home mom. Our two sons, Jayden and Jordan, shared a love for basketball, and we often attended games together. Little did we know that our lives were about to take an unexpected turn.
Our Family’s Experience With JNA
I’m Paula Nosrati, and I want to share our family’s JNA journey in hopes that I can provide answers and resources for other families going through a similar experience. In May of 2019 our family was living a seemingly normal life in sunny Los Angeles. My husband, Ramtin, owned a successful real estate development business, and I was a stay-at-home mom. Our two sons, Jayden and Jordan, shared a love for basketball, and we often attended games together. Little did we know that our lives were about to take an unexpected turn.
Jayden’s Symptoms
It all began when Jayden started experiencing symptoms that we initially thought were just allergies. He complained of congestion and difficulty breathing, which we attributed to seasonal allergies. We tried various medications and nasal sprays, but his condition didn’t improve.
The Search for Answers
We consulted with an ear-nose-and-throat specialist (ENT) who conducted a CT scan, but it revealed nothing concerning. We hoped that Jayden’s symptoms would subside as summer approached, but instead, they worsened. Nosebleeds became a regular occurrence, and they were far from ordinary – they were like scenes from a crime thriller.
Despite seeking further medical advice, doctors dismissed the nosebleeds as insignificant and suggested cauterization. However, my maternal instinct told me something was seriously wrong, even when medical professionals assured us otherwise.
The JNA Diagnosis
Desperate for answers, we turned to an adult ENT specialist who conducted another CT scan. This time, they discovered a tumor in Jayden’s sinus cavity, pressing against his brain. We feared cancer, but it turned out to be an even rarer condition: Juvenile Nasopharyngeal Angiofibroma (JNA).
JNA Treatment and Surgeries
JNA is a benign tumor that primarily affects boys aged 10-20 and is incredibly rare. Urgent action was needed, so we sought the expertise of Dr. Suh at UCLA, and Jayden underwent a two-day surgery. The procedure involved embolization to block blood vessels feeding the tumor and the removal of the tumor itself. The surgery was successful, but Jayden faced a long road to recovery.
In November 2021, the nosebleeds returned, signaling the tumor’s recurrence. Another surgery followed, but this time, the tumor had spread into Jayden’s bones due to the porous nature of children’s developing bones.
Seeking Specialized JNA Care
After discussions with medical professionals, we learned about a JNA specialist in Pittsburgh who could help. In April 2022, we traveled there for Jayden’s challenging surgery, which was successful. Post-surgery, we continued to monitor his progress and had regular check-ups.
After a routine MRI revealed a small residual amount in the bone near the frontal temporal lobe, doctors advised us not to be overly concerned. We were instructed to schedule a follow-up MRI in three months. Unfortunately, the tumor had grown during this period, delivering yet another devastating blow… Jayden would need to undergo more surgery. It was heartbreaking to know our child would endure further pain.
Consequently, we arranged for surgery during the 2023 spring break and returned to Pittsburgh. Fortunately, the surgery was a success, and they assured us that they had removed it all. We now eagerly await our MRI in six months, hopeful that we won’t have to face this ordeal again, God willing, as we get back into normal life.
Life After JNA Treatment
We’re thrilled to share incredible news! Following Jayden’s eagerly awaited MRI, marking a six-month milestone for us, we received confirmation that he’s now tumor-free. It’s a profound blessing, relieving him from the burden of living with thoughts of the tumor. Moreover, the Pittsburgh board reviewed his MRI scans, granting us the miracle of waiting a year until the next checkup. We’re filled with gratitude and excitement for the future, embracing newfound hope.
Our journey has been difficult, but we’ve been fortunate to have supportive friends and family by our side throughout. In our early days of dealing with JNA, the lack of information was isolating. This experience has inspired us to create the JNA Community website to provide support and resources for other JNA patients and their families.
Life After JNA Treatment
We’re thrilled to share incredible news! Following Jayden’s eagerly awaited MRI, marking a six-month milestone for us, we received confirmation that he’s now tumor-free. It’s a profound blessing, relieving him from the burden of living with thoughts of the tumor. Moreover, the Pittsburgh board reviewed his MRI scans, granting us the miracle of waiting a year until the next checkup. We’re filled with gratitude and excitement for the future, embracing newfound hope.
Our journey has been difficult, but we’ve been fortunate to have supportive friends and family by our side throughout. In our early days of dealing with JNA, the lack of information was isolating. This experience has inspired us to create the JNA Community website to provide support and resources for other JNA patients and their families.
Newly Diagnosed?
We’re here for you.