It’s done. 30mg of Elaprase floating around in Trey’s brain in Vancouver, BC, Canada. There were a few hiccups, but it’s done. That’s all that matters. The doctors at BC Children’s worked hard and formed a team that I look forward to working with monthly for Trey’s intrathecal doses. They listened, respected our routines, adapted, and I really appreciate that. This is a long-term treatment and we need to make it work for Trey, so that this treatment stays ‘okay’ for him. The IT team at BCCH seems to get that.
Next month we’re back to UNC for the every 6 month tests, then back to BCCH for September’s dose, where we will try again to have Dr. Muenzer and Joey Howell’s BWBH documentary film crew come up and be a part of the second local dose.
Above are the friends we will miss by not traveling to UNC monthly: Case, who is in the trial with Trey, and his brothers, Tyson and Brock. Melissa, it’s about time you visited Vancouver and we visited Tennessee!
