Kayne is back at home in Florida

It has been almost two weeks since I sent out an update. Much has happened since that update. In fact, I shared Kayne’s update then and he let everyone in on how he was doing and the struggles he faces as a college student. That was Friday October 13, 2017. Kayne had just completed a long full week with classes and his Avastin infusion. He took it easy on Saturday since he knew he had a long training day on Sunday for Ambassador training. Although, Kayne got plenty of sleep Saturday night, when I met with him on Sunday morning with his breakfast he said he was still really tired. He went to the training at 11am and Kirsten and I were at the Simon’s house waiting to help him later in the evening. Kayne called a few hours after he started the training. He was upset and asked for Kirsten and I to come to his room and bring him something he could eat. Speech Therapy was working with him on techniques to practice helping him swallow, but on this day things just didn’t cooperate while he was eating lunch. Kayne got choked a little and frustrated he couldn’t eat. When we met with Kayne back at the room, we had one of those family hugging and crying moments. It is tough when you can’t fix the problem. DIPG is a cruel disease and it slowly takes away and makes the patient suffer. That patient for us is our son Kayne. Kayne ate his salad and soup. It takes him a long time to eat so he must have plenty of time. After dinner, Kayne wanted to discuss the topic none of us wanted to talk about. "When do I go home?" . Kayne didn’t want to leave LSU. We didn’t want him to have to leave LSU. Kayne knew his body and although we talked about staying a few weeks more, he was ready to get home. Kayne wanted to be home by the weekend. Kayne felt at peace Monday with his decision and everyone supported him. On Wednesday October 18, 2017, there was a Goodbye gathering at LSU for Kayne. Residential Life and the College of Agriculture pulled together to have pizza and drinks for everyone as they visited with Kayne to say so long. It was a great turn out with his new friends from suitemates, Ambassador friends, STRIPES friends, the LSU swim team, professors and friends from the community. The Mayor of Baton Rouge declared October 18, 2017 Kayne Finley day and the LSU Alumni Association made Kayne a lifetime member. On Friday, our last night in Baton Rouge the Simon’s hosted a small group of friends for Gumbo. It was a great evening with our Simon family as well as a few other new family friends. Before dinner, we had a meeting at the Governor’s mansion with Louisiana Governor John Bel Edwards. Kayne was able to spend about 30 minutes discussing things to include the lack of funding for pediatric brain cancer, specifically DIPG. Kirsten, Kayne and Moose flew home Saturday and made it home Saturday night. I drove the truck home with a U-Haul trailer and all our belongings. Our friend Robyn picked up some groceries and had the house ready for us. Swimmer kids and families decorated the house for Halloween and a Welcome Home Kayne sign. Kayne had a rough day on Monday. His body just isn’t cooperating and it makes him miserable. We hate it for him. He had a better day today and we are thankful. Kayne has an appointment to see Dr. G. in Gainesville tomorrow and to get Hospice care underway. It is day by day right now and Kirsten and I are here to help him navigate and be as comfortable as possible. Until the next update, please continue to pray for Kayne and our family. Also, we ask if anyone has a desire to send something to Kayne, please honor him by sending the money you planned to spend and donate to his foundation Cannonballs For Kayne. www.cannonballsforkayne.org Curtis Finley Kayne’s father Curtis.finley@gmail.com The Photograph is Kayne being hugged by his suite mate Noah Harper.