Ben hasn’t had any active treatment since the last round of MIBG in October of 2014.
We’ve been waiting to hear back from Sloan since then and finally did today. Part of the waiting was dealing with insurance, specifically Medicaid. Everything you’ve ever read or heard about dealing with insurance through the government is true. I sat on hold for hours waiting to talk to a person. One day I say on hold and because I was on for an hour, they hung up on me because their policy is to hang up after an hour. Thankfully I finally did get through to someone who was an absolute peach. Really, she was. Never forget that fellow humans are eventually on the other end of those calls…
So, I got a number for Sloan to call yesterday and they got everything straightened out. We also learned that we are now scheduled to fly out to New York for a full workup on March 30th. Ben will start treatment with hu3F8 the week after.
The funny thing about all of this is that after months of waiting, it took less than 24 hours for the Sloan to get everything in place after one simple call to Medicaid. That has to be a record somewhere…
Please pray for our family as we take this next step in the journey.