1st chicago trip (Oct 2025)

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 communicating with them via email and phone calls, I was so excited to finally meet them in person! 

We received answers to many questions. I have so much more peace moving forward. Rocco’s first surgery will likely be the first week of March 2026, God willing. This surgery will be to place expanders and excise the bottom portion of the Nevus by his cheek. We will be in Chicago for this surgery for around 7-10 days. After the first few days post surgery, we will go back to the doctor for the first fill. At this time, they will educate us on how to do these fills at home. After filling the expanders with saline over 10-12 weeks, we’ll return to Chicago for a 2nd surgery to remove and reconstruct the first section of nevus. This is considered one round of tissue expansion. Then we wait 4 months and do the exact same thing for a second round of tissue expansion. Depending on how much Dr. Bauer can or can’t get, he said we may need a 3rd round of tissue expansion. We have to wait at least 4 months between each round. That’s 6 surgeries and about 21 months (give or take). 

It’ll be a long road and this isn’t even the beginning yet. I felt so nervous about having to do the fills at home, but Dr. Bauer and Susan gave me much needed reassurance and reminded me that they have been doing this kind of virtual management since the 80s. 

For this trip, we stayed at the Ronald McDonald House and it was so incredible and very humbling. We had a great experience staying there and felt very well taken care of. We will likely stay there again in the future. 

Next week, we will be in New York at Memorial Sloan Kettering for Rocco to have a follow-up brain and spine MRI and to meet with a neurologist who is an expert in NCM. Please keep us in your prayers that all goes smoothly and we get favorable results regarding the lesions on his brain. Rocco’s smile through it all keeps me going. Thank you for all the prayers, love, and support!! 

Jenny