Catherine.

This is Catherine - 2 and her brother Paul - 6 picking pumpkins last Halloween. The question had been in limbo for a while, but a couple weeks ago we finally got the answer. Catherine has Neurofibromatosis, NF1. A genetic disorder with no cure that can cause a whole host of issues, or absolutely nothing at all. All we can really do it take her for annual tests and wait. The possibility has been looming out there for the better part of a year. The reluctance of all the doctors to diagnose her though had lulled us into a sense of hope. Knowing it was out there doesn't make it any easier to come to terms with once it becomes concrete though.

This week the hits just kept coming. On Monday my wife called me in tears to tell me the results of Catherine's latest MRI. They found an Optic Nerve Glioma. That is a type of brain tumor. In my two year old little girl.

The good news, if there is any, is that is supposed to be very slow growing. They are also supposed to be benign. I hope so at least. From what I understand of this, they can't operate to remove it as that will cause blindness. So they will increase her MRI's to quarterly and eye exams every 6 months but otherwise leave it be until such time as it grows and impairs her vision. If that occurs, they will use chemotherapy, which opens up a whole other bunch of concerns. It's hard to say at this point, as it seems like I am finding more out every day, and it rarely turns out to be a light at the end of the tunnel.

We have eye appointments for both kids this Friday. The NF1 specialist suggested it would be prudent to have Paul checked out just in case. This should be fun. Paul has a fear of Dr's already and Catherine has fresh memories of the IV from her MRI last week.

We also have a Neurosurgery appointment for Catherine in two weeks. I'm honestly not sure why. They can't operate, as mentioned above, but Dr. Uhas said said the neurosurgeon would be best able to judge the growth of the tumor. I just don't fully understand HOW. I will probably call Dr. Uhas today.