Our son's NF journey

Josiah has Neurofibromatosis (NF-1). (Here is a brief overview of what NF is) Last week we took him to Cincinnati Children's Hospital to see his specialist, Dr. Hopkins. Dr. Hopkins wanted to be proactive and ordered an MRI with orbits to look for optic gliomas. Which 1 in about 20 kids with NF-1 develops. Most of the time by the time the child is showing signs or symptoms of one their vision is already affected and the loss vision cannot be restored. So the thought is to get regular MRI's done to look for the first signs of one so if there is one there it can be monitored and treated before any vision loss has occurred.

Because we live a good 3 hours away from Cincinnati we had his MRI done on Thursday and spent the night at the Ronald McDonald house that night. We saw his specialist on Friday. Josiah had to be sedated to get his MRI done due to him only being 2 year old. He would not be able to lay still enough for the images to be taken. So the rest of the day he was pretty wobbly and could not get his bearings. Which frustrated him to no end!

Friends of ours who live in KY were actually at Cincinnati Children's on Friday with their oldest for an appt (different type) and we were able to meet up with them! It had been a good 4 years since we last got to see them. We were only able to catch up for about 20 minutes before we had to get to our appt. But it was really nice to see them again.

Dr, Hopkins did find something on the MRI. Smiles has an optic glioma on his right optic nerve. The thickening is not bad right now. So in 3 months we have to go back and get a repeat MRI to see if there has been any changes. We also have to get an eye examination done to check for vision loss, pupil responses, etc.  If there is any changes then Dr. Hopkins will refer us to an Oncologist so they can start Chemo. (they do not want to do surgery unless it is a last resort. If surgery is done then the surgeon would have to remove the optic nerve which would result in blindness in that eye)

If there are no changes then we will go back every 3 to 6 months for MRI's to continue to monitor the tumor.

I am thankful that it was caught so early. This is not the path I would have chosen for us but I need to put my trust in God. We are 3 hours from a hospital that has a research clinic for NF. Which is fabulous and such a blessing. Josiah has not shown any symptoms of the tumor right now which is promising.

 "Trust in him at all times, O people; pour out your heart before him; God is a refuge for us" Psalm 62:8

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid."John 14:27