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Rocco in the City - Our NYC trip

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Back in September, Rocco had an MRI of his brain and spine done here in Florida. The results came back and showed that one of the lesions on his brain had increased in size. On the MRI report it said this increase in size could possibly be due to malignant degeneration. My heart instantly sunk. I quickly reached out to a highly recommended Neurocutaneous Melanocytosis (NCM) expert, who is a neuro-oncologist at Memorial Sloan Kettering (MSK) in Manhattan. We consulted with her when Rocco was first diagnosed with NCM.   A week later we met with her virtually. I don’t think I stopped crying that entire week. When we met with the NYC doctor virtually, she told us that although one of the lesions increased in size, she did not feel that it was due to malignant degeneration. She said it appeared to be growing because he is growing. The relief I felt after hearing this was immediate. I felt my whole body relax. I was so thankful. She explained being that “malignant degeneration” was writt...
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1st chicago trip (Oct 2025)

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Our short trip to Chicago was quick, but informative. I am so grateful that my Mom and Papi came with us so that Mike was able to stay with Mikey.  We met with Dr. Bruce Bauer and his nurse Susan.  Dr. Bauer is known for treating and following the largest surgical series of patients with large and giant nevi from the USA and beyond. His experience derives from four decades of pediatric plastic and reconstructive surgery, with emphasis on tissue expansion and the full range of reconstructive procedures applied to patients with large and giant nevi. (Naevus Global). His nurse, Susan, is well-known and respected amongst the Nevus community for her dedication and care for patients. Another doctor who was not at this appointment, but who will be an integral part of Rocco’s care team is Dr. Alkureishi. He works with Dr. Bauer and did part of his training and fellowship with Dr. Bauer. After reading and learning about this plastic surgeon dream team for the past 3 months and communic...
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