Kayne's home for a few days

Hello friends and family, Kirsten and Kayne arrived home safely today. I was more than happy to pick them up at the Daytona Beach Airport. It had been a week and a half since I last saw them. It isn’t always easy taking the backseat in our situation. Kirsten being the mother wants to be the one with Kayne as the primary caregiver and one of us also must take care of other aspects in our life. It isn’t always easy not being able to share as much time with Kayne. Kayne had a busy week since his arrival to Louisiana last Sunday. He and Dementor checked in on campus last Monday at 8am for the STRIPES (Student Tigers Rallying, Interacting, and Promoting Education and Service) program at LSU. He had fun, but was exhausted by the time he was finished on Thursday. They started early and went late at night. Everything from classroom activities to a good game of tug of war. The kids loved D! Kayne said D snored a few times in class making them all laugh. Everyone was gracious and accepting of Kayne’s extra buddy. Kayne checked out of his dorm for STRIPES and was fortunate to check into his room for the semester. Although he didn’t move anything in yet, he was able to see the room and get a feel of what all he wants to bring over. Move in day is Wednesday the 16th. Kayne met with his new medical care team at Our Lady of the Lake Regional Medical Center. He was very pleased with the new team. They are in the process of getting an appointment to measure him and order his wheelchair. They are all on board and ready for an emergency should it arise. The care team will be notified immediately should he come to the emergency room and Kayne’s protocol from his Five Wishes shall be followed. Kayne and Kirsten traveled to Atlanta, Georgia for a planned indoor skydiving event on Saturday. On Friday, Kirsten and Kayne were dropped off at the airport by our gracious host, Aimee. They made it through security at the airport with Dementor and onto the plane. They spent the evening and night with Max’s family, the Ambrose’s. On Saturday, Kirsten picked up Kayne’s and Keagan’s Florida friends who were going indoor skydiving with them. She took all the kids to meet Keagan’s FSU classmate at the lake. His Grandma took all the kids tubing on the boat before they had to leave to go indoor skydiving. The kids had a great time skydiving indoors. Kayne told me they had on a special suit to help catch the air and they went one at a time. A gentleman was inside the chamber and they would lean forward and he would help them fly in the air. It is not jumping out of anything high, but simulates being in the air before pulling the parachute. Keagan plans to stay with friends a little longer. Kayne and Kirsten came home. Kayne was glad to get home and lay in his bed. He hadn’t been in his bed since we left for Alaska the first week in June. Kayne’s high school swim coach, Coach Bethany stopped by to visit him before dinner. She brought him this year’s new swim caps with the cancer ribbon grey and gold on it. She had it approved for the team to wear this season in honor of Kayne. Very cool and sweet of her. Kayne plans to meet with some friends and visit his high school teachers before heading back to LSU on Tuesday. More to report after move in day. We have received a few donations this week and we thank you. I know some people have asked what they can do for us. We just went through a big drive for Dementor and we thank everyone who contributed to making D a reality for Kayne. Kayne enjoys reading your encouraging notes and cards people send to lift his spirits. Thank you. Now we are back to paying and preparing for medical bills. If you haven’t donated please consider helping us in this way. One of the best things is not being stressed financially with medical bills. Insurance doesn’t cover 100 percent. Your donation is 100 percent tax deductible and anything not used for medical bills will be used for DIPG research and to help other DIPG families. Your donations can be made at www.cannonballsforkayne.org or mailed to Cannonballs For Kayne Foundation at P.O. Box 1738, Ormond Beach, FL 32176. Love to you all and let’s keep our prayers going. Curtis Kayne’s father Curtis.finley@gmail.com