Guilt. Fear. Dread. Relief.

Guilt, fear, dread, and relief. This is my daily cycle and sums up how I feel about my daughters health issues.

Guilt. NF1 is a genetic disorder that is inherited. So we gave this to her. I feel racked with guilt that in some cosmic karma manner she is being forced to pay for my sins.

Fear. What if she loses her sight? She is months from her third birthday. How will she cope. Would she remember later the things she can see now? What if this is just a precursor of terrible things to come? We can all bog ourselves down in the unknown at times if we try, right now though it is hard not too.

Dread. Having to tell people, while often necessary, is both a relief and a nightmare. Every time I say it, it both makes me want to cry, and helps me to accept it and deal with it. People seem to either be rendered speechless or expend all their energy to not cry. Neither way is particularly easy for me either. I'm sorry, I didn't want to share this burden with you, but we will both grow from it I hope.

Relief. I am grateful for the strength, compassion, and companionship I find in my wife. It is times like these I am reminded she is as always the strong one. I am awash in the comfort we met Kim Uhas. Though she ultimately gave us the news of Catherine's NF1 she is certain and decisive on a course of action and that is comforting to say the least. I am also thankful to be in metro Atlanta, so close to this many Dr's and Nurses who seem to be extremely knowledgeable on NF1. Last I count myself lucky to, in this bad economy work somewhere in which prospects of unemployment are low, medical benefits are excellent, and the folks I work with are extremely supportive.

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.