Philip, Jr.- July 2013 MRI

As scary as the above video seems, we received good news from Little Philip's latest MRI.  This is a 3D orbit that shows just how complex the tumor is and why it is considered inoperable.  However, it is not causing any concerns with blood vessels, nerve function, airway or swallowing.  Comparing the January 2013 MRI to this latest July 2013 showed no significant growth.  When Dr. Korf did the volumetric analysis on the tumor shown above, it was 86 ml in January 2013 and is 89 ml now. That is negligible when significant growth is defined as 20% increase in volume or more. So this is good news.

So where are we?

We will do another MRI in six months. If the tumor shows no growth at that time then we can go back to once a year MRIs. Concerns to watch for with this nodular tumor:
* sudden onset of pain. If this happens, it could mean the tumor has turned malignant. There is a 10% chance over our son's lifetime that this tumor may turn malignant. If the tumor shows rapid sudden growth it could also be a sign of malignancy.  It is a serious concern that warrants our vigilance.
* obstructed airway. The tumor is touching the sides of Philip's windpipe but it is not compressing it at this time. We will watch for any changes in breathing or swallowing.

Otherwise, this latest MRI of his head, neck, spine, chest and abdomen showed no other signs of tumor activity and for that we are greatly relieved. 

We again are incredibly blessed by the outstanding care we continue to receive from Dr. Korf, other physicians within his UAB NF Clinic as well as the clinic genetic counselors and staff.  Thank you for your thoughts and prayers!