The Adventures of Evan: Day 406 - Where did the summer go?

The Summer of Evan is drawing to an end. The last 60 or so days seem like a blur, but we're thankful that we've managed to avoid any hospital stays. Evan is in great spirits as we get ready for school to begin next Monday. On top of that we received some encouraging news that could impact Evan's treatment in the future.

Enjoying the view on Stone Mountain

On Tuesday of this week Evan met with his newly assigned ID doctor to discuss the results from his MRI. We were thrilled to hear that nothing new has cropped up and that the potential infection in his hip is no longer visible on the scan. His spleen and liver still show spots, but they haven't grown and the doctor wasn't concerned. The only other area that showed up was some spotty patterns on his femurs, likely the result of his increased activity.

Dinosaur exhibit at Stone Mountain

Some of the best news we received was his desire to pull the Keflex (antibiotic) and Voriconazole (anti-fungal) from Evan's treatment plan. He said he's never seen a patient stay on these drugs this long, even patients affected by bone cancer. The doctor also expressed concern over keeping Evan on Voriconazole any longer than necessary due to the toxicity it has on his body. In order to have these pulled from the treatment plan he needs buy-in from Evan's surgeon and primary oncologist. I can't imagine the surgeon will resist, but I have my doubts about oncology agreeing to this plan. Evan has been a tricky patient and from conversations with them over the last year I know they feel more comfortable having this "safety net" in place. Hopefully we'll get a decision in the next 30 days.

Center for Puppetry Arts

Since our last blog update we've tried to keep Evan and Nolan busy. School begins Monday and we had a chance to meet his 1st grade teacher today. When Cristy was explaining Evan's medication and mobility challenges I feared we might have been overwhelming her. She seemed to take it all in stride and I feel confident we're in for another good year. We also had a chance to visit Evan's teachers from last year. They greeted Evan with a smile and were happy to see him getting around so well.

An afternoon at Catch Air

Tomorrow marks Grandpa's 70th birthday. My dad is still getting around pretty well and we're so lucky to have him in our lives. We're going to celebrate this weekend and the boys are beyond themselves. Looking forward to making the most out of our last weekend before school starts back up. Onward to 1st grade!