So it official Kai has failed off of his first chemo protocol.
It’s been a few weeks in the making, and not a total shock, however no less disappointing.
Over the past few days Kai had a series of vision tests, at Perkins and Children’s, and just as suspected his vision has worsened. His visual field has decreased as well as his visual acuity.
As i understand it this can mean a few things: a) prolonged pressure from the tumor/hydrocephalus is causing delayed atrophy to the optic nerve b.) the chemo itself has built up damaging levels of toxins in Kai’s body which is causing further vision loss. c.) the tumor is growing and is just not showing up on he MRI yet.
Either way what we are doing is not working so he has been pulled off this protocol.
We were sent home today, no chemo, with a list of options (and consent forms) for what to do next. We have to decide by next week.
Let the research begin.
Keikikai 
Kerri, Mark and Kai,
I’m thinking of you. I will pray that some resolution will come to you. I honestly don’t think I have ever met a stronger human being than Kai. Amazing!!!!
Keeping you all in my thoughts, and knowing with certainty that whatever decision you come to will be the absolute best one for Kai. Those words- failed off- must feel horrible to hear. I hope that in the midst of the research and decision-making you can remember all of the things you have advocated for that have been a success in making life so much better for Kai.
Wow. I’m so sorry you are going through this. I know you will make an informed decision and the one that will be the best for Kai. He is a strong little guy with amazing parents!