Wednesday, November 23, 2016

Eli and I arrived home from Augusta late Monday night with not the best news. After the sedated MRI, which eliminated some of the motion artifact in previous scans, the scan shows eight locations of concern, none of which are new locations, but all of which are leptomeningeal disease (the sugar-coating). Five are believed to be stable and too small to measure, one is growing, and the other two locations are the recently resected areas. Those areas because one still has cyst tissue, but no nodules, just cyst, this could be good and go away, and the other area because they see now that only 40 percent of the disease tissue was removed. Since this was in a growing stage before, which
prompted the surgery, we can only assume it is still in the growing stage. Our options are to use gamma-knife radiation to the three spots, watch the other five, and/or change the chemo, or leave the trial, or do nothing. We haven’t had a chance to discuss in detail, but I’m betting that Vic is leaning toward
doing nothing until the December scan. This is a, sadly, familiar place for us. We’ve even been to this place more than once. I’ve said before how Eli makes it so easy to be in denial about the situation, and that continues to be true. He is having wonderful, active, normal days.

We had a busy week leading up to the weekend when, on Friday, we left with a church group of about 200 to go to Northern Kentucky to tour the Creation Museum, attend Grant County Church of Christ, then tour the Ark Encounter. It was a fabulous trip, and Eli was active, participatory, “normal” throughout the whole weekend. The kids held snakes, and
explored. Eli and I left before the group did on Sunday so we didn’t get to see the whole ark, and drove from North of Lexington to Augusta on Sunday. I figured out that of 68 waking hours in 4 days, I had driven 22. And, some of those were at night on I-40 through the Smokies. My hands were frozen in a gripe by the time we hit the South Carolina state line.

It was one night in Augusta, then back late Monday night as I mentioned. Up Tuesday for dentist appointments, driving practice (for my 16yo), online schooling, non-profit organization stuff, unpacking, laundry, dinner, etc., as life goes on. I am looking forward to a Thanksgiving weekend, and will be having lunch with church family, then regular family. I hope we do a couple of special
things this weekend, like catch a movie at Bridgestreet or something. Then we will be hitting it hard building a Christmas parade float for December 1. Our non-profit is super excited about our float that we will be preparing, and the awareness it will raise. Eli will be in it with us, as well as some of the other local cancer kids. So, another busy week of fun stuff with heavy undertones. Then Eli’s birthday is the 3rd, and it’s a big one in many ways.
Happy Thanksgiving, friends!

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