I understand your fear. Realize that optic gliomas only happen in 15% of NF cases, and the moms you see posting here are those whose children have more severe cases than most. If our children were the half who are barely affected, we would be spending this time at the beauty parlor, playground, PTA, or mall, rather than glued to the computer. It's wise to have concerns evaluated. It's much better than losing sleep indefinately, but the odds are in your child's favor. And, half of the gliomas don't grow, so having one doesn't necessarily mean that a child needs chemo.
Although our children are the "worse case scenerio" they are happy, gorgeous, vibrant children. I thought that the NF diagnosis would be the end of the world, and it wasn't. I thought a tumor would be the end of the world, and it wasn't. I thought that having it grow would be the end of the world, and it wasn't. Now, personally, I hope to end our bad news now and not go any deeper into it, but even then, it won't be the end of the world. Most of our kids are a little quirky and enjoy their trips to the doctor. Of course, we are sure to spoil them so the visits are something to look forward to.
We had no indication that Jaxon had a glioma - and his was about the size of a quarter when it was found. We had an MRI to serve as a baseline "just in case" something happened in the future. Except, it revealed that Jaxon already had one. He was three.
Keep in touch if you need to. This is a great resource but can be addicting. Remember to play too. Let us know how your story turns out. We love good news!