Jill Markland, NF Mom
My blogs
| Gender | Female |
|---|---|
| Industry | Human Resources |
| Location | Lawrenceburg, IN, United States |
| Introduction | I am mom to NF Hero, Jesse Markland. Jesse is now 4 years old and has Neurofibromatosis (NF1). This means he has multiple café-au-latte spots, about 20 – 30 dermal neurofibromas (small tumors), 1 plexiform neurofibroma (more complex tumor), an optic glioma (brain tumor behind his left eye), his legs often hurt for an unknown reason, nerve pain across his shoulder blades that causes him to scratch and dig at his skin until he bleeds and scars, and chronic/severe nerve pain at the back of his head. Even though one of his NF symptoms is a brain tumor, Jesse’s worst NF Manifestation is the head pain. It is so severe that without medication and a nerve block procedure that has been done, Jesse’s head is unable to be touched. Raging cries of pain do not begin to describe what he has gone through. He takes a liquid pain medication 3 times per day, two additional pain pills at night, and he is now scheduled to get regular nerve blocks to numb the area of the painful nerves. He is only four years old. Not long ago, someone told me that Jesse must have walked into a nest of mosquitos, he had bites all over him. My reply, “no, those are tumors”. |