Nora was born with stage 4s neuroblastoma. When I was 7 months pregnant, they found a mass in her abdomen. She was delivered on my birthday and sent to thE NICU for testing. It was determined the mass was on her abdomen and suspected neuroblastoma. They confirmed and diagnosed her with stage 4s neuroblastoma after a biopsy/adrenalectomy at 2 months old. At that time it had already spread to her liver and ended up in her bone marrow. She had MRIs every 3 months and ultrasound/labs every month for a year before they decided to move her to every 6 months. Her liver ended up clearing on its one as well as the bone marrow shortly before she relapsed at 18 months old a couple months before her first 6 month set of scans. It was confirmed a relapse to her right petrous bone into the right cerebellopontine angle and internal auditory canal. She immediately started COG protocol for stage 4 high risk neuroblastoma. She went through 6 rounds of chemo, stem cell collection, 2 stem cell transplants, 18 days of radiation and 6 rounds of immunotherapy. She also had multiple admissions due to neutropenia and line infections. One between chemo and stem cell transplants landed her in the PICU where she was almost septic with colitis, cdiff and neutropenic. It was one of the scariest hospitals stays for Nora & I. Nora received her first set of NED scans at the end of COG protocol in September of 2018. This was a huge deal for us as it was the first time she had no evidence of disease since birth.
Nora is an extremely smart, energetic, sassy, full of life 3.5 year old who LOVES music, dancing and Disney princesses. She has severe anxiety of the hospital, blood work and some testing. It really helps when she sees familiar faces but her anxiety increases the older she gets and more aware she is of what is happening. Due to the location of her relapse tumor, she has no hearing in her right ear. Due to chemo she has severe high pitch hearing loss which requires her wear a hearing aid. Chemo also caused dental decay that required her to have her top four front teeth to be removed, the rest except for the bottoms four front were capped. So far other than lingering right leg pain that comes and goes she hasn’t had any other after treatment complications. That isn’t to say more couldn’t pop up but for now I consider her lucky to be thriving and healthy
She is currently still NED 6 months later! She is currently enrolled in a year long clinical trial called Neuroblastoma Vaccine trial at Memorial Sloan Kettering Hospital in NYC.
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