Dom has a genetic disorder called Neurofibromatosis 1 (NF1). It is a disorder that consists of, typically benign, tumors (neurofibromas) that grow on the covering of the nerves anywhere in the body. Dom has neurofibromas all over his body that will increase in number as he grows. For this reason he is followed by the NF Center to make sure they are able to address any issues that may arise.
Sometimes a group of neurofibromas develop into a large mass called a plexiform neurofibroma. Dom has one of these that goes from his left hip to his knee. Due to the nature of plexiforms, they can become malignant. Therefore, he has been monitored since a baby every year via MRIs. Pain and growth of tumors are a common sign that something could be wrong. In November 2015, his annual MRI showed significant growth so he was given a PET/CT scan that showed activity. As a result the lesion was biopsied and it was found to have gone under malignant transformation. It is called a Malignant Peripheral Nerve Sheath Tumor or MPNST. He will now be going through treatment to hopefully shrink and prevent it from metastasizing then surgery to remove the tumor.
No comments:
Post a Comment