Well finally we got the MRI today. Luke being young needed to be put under so he wouldn't move, he also has a little cold like everyone in the family right now so they had a doctor watching over while they put him to sleep.
The doctor finally showed up and told us that yes Luke would have his left eye removed. We had prepared ourselves for this and understood why. I asked if we could see the MRI scans (warning if you ask to see these they are pretty gross and yet cool at the same time). We checked them out and he showed us what was going on in his eyes. you could not only see his eyes but his brain and his teeth and everything else inside.
We were concerned about having trilateral retinoblasoma and asked about this but he wouldn't give us an answer about it were guessing it's because he does have it but he doesn't want to be the one to tell us.
So we discharged and now have him at grandma's house.
We have to wait till Wednesday which is when they will take out his eye and do a spinal tap, a bone marrow test put in a central line and what ever else needs to be done.
we were checking out YouTube and were encouraged that there is a little girl on their who is doing well. Also my mother ran into a lady who's son has this and is now 18 I'm waiting to get her number to contact her and ask her about her adventure.
on a side note this woman also has 2 other kids who turned out normal which is a great relief to my wife.
I also called my boss and told him my boss being the great guy he is with 2 of his own kids understands what I'm going through from a parents perspective and has told me he will be as supportive from a work perspective as i need.