Wednesday, November 20, 2013

Little Philip update and Dr. Korf's Award

At our July 2013 check up with Dr. Korf, we inquired about a new tumor growing on Little Philip's right temple.  At the time, it was pretty small but since then has become more noticeable and somewhat sensitive.  The question we asked in July was whether or not we should attempt to manage any tumor growth that appears on the face.  Dr. Korf was very receptive to our concerns, but also rightly pointed out that future tumor growth is hard to predict.  He understands our desire to remove facial tumors but at some point, we may lose the battle to completely avoid cosmetic concerns.

Fast forward to today when we met with Dr. Peter Ray, a pediatric plastic surgeon here at Children's Hospital of Alabama.  We were very pleased with how intentional Dr. Ray wants to be in his approach to potential removal.  As a quick review, NF tumors grown along nerves, so any removal poses potential nerve damage and when it involves the face, there are lots of important nerves that control facial expression.  Dr. Ray pointed out that the location of Philip's tumor suggests that he needs to take into consideration the function of the eye (blinking, eyebrows, etc.).  He asked to further review Philip's latest MRI before making any decisions about surgery so we will revisit with him in about two months.  That will be after another January 2014 MRI and our follow up appointment with Dr. Korf.

Speaking of Dr. Korf, we were honored to have our story included in a recent video shown at the Children's Tumor Foundation annual Benefit Gala, where Dr. Korf received the 2013 CTF Humanitarian Award.  We could not agree more with the accolades for his thirty plus years of dedication to research to diagnose, find a cure, treat, and care for patients with neurofibromatosis.  We are truly blessed to live where we are to receive his care and for the leadership he provides to the UAB NF Clinic.