Dementor has arrived!

Dear family and friends, We had our meeting with the care team on Friday and discussed Kayne’s MRI scan. It is with a heavy heart, I must let you know the radiation was not working to stop the new tumor growth. Also, the original tumor in the Pons has progressed. Due to the radiation not working, it was stopped. Although it was terrible news, we kept our plans to meet family at Lake Cumberland for a great weekend of fun. Kayne & Keagan hung out with friends and cousins. They got in plenty of boating time and got to ride the tube and of course enjoy the fun of falling off. Keagan had his pal and our adopted son, Max there with him as well as his girlfriend, Kendra. Our friend and neighbor Paula came with us also for a little R&R. Although we hated to leave the lake Sunday evening, we were equally excited to get to Monday because Dementor was arriving with Susan the trainer. Monday arrived and there were a few setbacks leading to a delay with Dementor’s arrival, but they finally arrived at the airport at 8:00 p.m. Monday also meant we had to focus on a document that outlines Kayne's Five Wishes (directive for plan of care should he become unable to speak for himself or make decisions for himself). On Tuesday, we were treated to dinner at Montgomery Inn Boat House by Dean Gregory, the owner. Dean was gracious and seated us in a nice corner seat by the window looking out at the Ohio river. Susan the trainer had her dog, Olaf with us in addition to Kayne’s new service dog, Dementor. We also met with the care team yesterday to go over the document, plus we had to prepare Advance directives / living will / do not resuscitate orders for four states: Kentucky, Ohio, Florida and Louisiana should something happen suddenly to him while in one of these states. We also have Power of Attorney for four states: KY, OH, FL and LA for when Kayne turns 18 and may not be able to make decisions for himself. The last one was a Participation in an Autopsy Study with CCHMC for furthering DIPG research. This one is hard to process as it brings a smack of reality of this terrible disease. Kayne had an eye appointment this morning and then they were off to the New Port Aquarium. Kayne said he had a good time. He is adjusting and getting used to his new addition. The service dog draws attention, sometimes unwanted. He doesn’t want to be short with people, but the dog is working and he can’t always let them pet the dog. I traveled to London, Kentucky today and I leave for home in Florida in the morning. Kirsten and Kayne will be heading to Baton Rouge this weekend so Kayne can start his orientation class on Monday. Kirsten will fly back home to Florida next week and Kayne will fly to Atlanta to meet up with Keagan and a group of special friends for some indoor skydiving. Both Kirsten and Kayne will fly back to LSU for move in and I will drive with Kayne’s wish list for his dorm. Chopper will be staying with my mom for a bit since I will be in Baton Rouge quite a bit. It is hump day! Let’s enjoy the rest of the week. Many of our friends have donated to Kayne’s foundation. If you haven’t donated yet, we encourage you to donate and join our team Cannonballs For Kayne Foundation. P.O. Box 1738 Ormond Beach, FL 32175 Cannonballsforkayne.org We thank everyone for your love and support! Kayne’s father, Curtis Finley Curtis.finley@gmail.com