Honored Kid

Jocelyn P.

Age 13
Jocelyn P. Kid Photo

Location

Deer Park, NY, US

Diagnosis

Neuroblastoma

Date of Diagnosis

April 2012

Status

Living with ongoing rare paraneoplastic syndrome.

Treated At

Steven and Alexandra Cohen Children's Medical Center

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My Story

Our beautiful daughter was diagnosed with Stage 3 Intermediate Risk Neuroblastoma with associated opsoclonus-myoclonus-ataxia syndrome (OMAS, a very rare neurological autoimmune disease often associated with Neuroblastoma) during the very early hours of April 8, 2012, Easter Sunday, exactly 3 weeks before her first birthday. An 8.4 x 6.4 x 5.6 cm mass was found in her chest cavity, crossing her midline and compressing her spinal cord between T6-T8. She started her first round of chemotherapy later that afternoon. Thankfully, Jocelyn responded amazingly well to treatment, and was released soon after and able to spend her 1st birthday at home. No resection was needed of the tumor, but because of the OMAS, she had lost nearly all of her milestones (talking, cruising, standing, rolling over, crawling). Jocelyn's treatment consisted of 4 rounds of chemotherapy, monthly IVIG infusion, monthly 3-day steroid pulses, and later in 2012 five rounds of Rituximab (for the OMAS). Today, Jocelyn is a sweet, mischevious, goofy, loving, happy 2-year-old who loves playing with her big sister Kaiya. And though as of her 2nd birthday she has begun to regain the milestones she lost, we struggle daily with the ongoing issues and treatment for her OMAS including continued monthly IVIG infusions as an immunosuppressant and various in-home therapists to help bring her up to speed with her peers and to keep what work we've gained in the event of an OMAS relapse. Through all of this, Jocelyn has shown amazing strength and bravery; something that no child should be called upon to do, especially at such an early age. Every day, I am in awe of her spirit, her will, and her determination. At two years old, my baby is my hero. We are SO incredibly inspired by and proud of our little Warrior Princess.

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