Honored Kid

Jelena C.

Age 15
Jelena C. Kid Photo

Location

Charlottesville, VA, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

January 2020

Status

In treatment

Treated At

Sibley Memorial Hospital / Johns Hopkins Medicine Children's National Medical Center and Children’s National Research Institute (CNRI) University of Virginia Children's Hospital

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My Story

Our daughter Jelena started out 2020 in a quite typical routine. As an extraordinarily healthy 12 year old, she attended school, church, took Irish dance lessons, biked nearly every day, and was running with her schools running club. However, the end of January plagued Jelena with headaches, extreme lethargy, and occasional vomiting. Very typical symptoms of a stomach virus, mono, migraines, or some random “kid sickness” that gets passed around at school. One trip to the pediatrician and one trip to the local hospital for fluids showed no real indicators of anything severe. Her bloodwork was normal, her urine was normal, and she perked up after a bag of saline. My husband Mike and I weren’t overly concerned so we did the usual rock/paper/scissors (he lost) to figure out who would stay home and wait out the 24 hour post vomit school protocol. After 4 days of sleeping on the couch, Jelena’s headaches started inducing projectile vomiting and she received immediate relief after she threw up. As a nurse specializing in Neurosurgery, I knew that positional vomiting was an indicator to increased brain pressure. On Sunday morning January 26th we called the pediatrician again and included the terms projectile and positional vomiting and she sent us back to the pediatric ED and ordered a scan of her brain. Within 3 hours we heard the words that irrevocably changed the trajectory of 2020 and our lives, “there is a mass in your daughter’s brain and she needs surgery.” The next few hours were a total blur. Jelena was admitted to the PICU (pediatric intensive care unit) where she would stay for almost 3 weeks. We had a plethora of physicians come talk to us, Jelena was taken away for longer and in-depth scans, and Mike and I jumped on our phones and called our parents, our pastor and close friends. We cried, I vomited, and I screamed. We were in a state of shock. How did this sweet healthy girl who had run a two mile race recently go from being 100% functional to having a brain tumor? Fast forward from March 2020 to today. We now have a teenager! Jelena turned 13 which was a huge milestone. We have all remained COVID free. We continue to travel 118 miles every two weeks for Jelena to receive immunotherapy treatment at DC Children’s. Her latest MRI was positive, but we remain cautiously optimistic. She continues to thrive with her physical therapy and occupational therapy. Her left leg is very functional (with the help of a brace) and she just recently had some major improvements with her left arm and hand. Most recently, she tied her shoes by herself for the first time since surgery. We celebrate and cry at every achievement as if it were her first. We live our life in 3 month intervals, anxiously awaiting the news of the next scan. We live our lives the best we can.

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