Kayne has been home three weeks

Dear family and friends- This Saturday will make three weeks we have been back at home from LSU. In some ways, it feels like it has been a lot longer. I think it is because we live day by day with multiple tasks for Kirsten and I to care for and spend time with Kayne. I love being able to care and help Kayne. It is great being able to do things with him like help him stretch and talk to him. When it comes to the things DIPG has taken away from Kayne causing him so much pain and despair, I just want to scream. I can’t take away his symptoms and pain and it cuts like a knife in your gut during those times. That leads me to share Kayne’s message he posted on Instagram/Facebook the other night. Kayne’s message –Tuesday November 7, 2017 “Be kind and forgive.” Ephesians 4:31-32

“Future,” a tricky word for me. I’m tired of being tired. I know people would do anything to help, but living for me isn’t possible. It sucks, but I refuse to doubt His plan. I feel I’ve done my part and hopefully I can truly say goodbye soon. 

“Jesus said to her, ‘I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?’” John 11:25-26  Some people were concerned about his message. Kayne has been a trooper handling this disease we now know as DIPG. Rarely does he break down. He hasn’t been depressed like one would imagine. Many things didn’t work out like he had hoped. He didn’t feel his best in Alaska and he persevered. He lost his ability to walk right before classes started at LSU and he persevered. He got a scooter and turned what he thought was going to be impossible the Saturday before classes into a major accomplishment, physically attending classes daily and making it work for 9 weeks. Most his professors and classmates had no idea what his situation was. They saw a young man with a scooter and a service dog. His body began working against him and he was getting weaker so he had to leave LSU. Since we have been home, DIPG has robbed him of more energy. He has blurry vision in his good eye, struggles with eating and swallowing and more intense pain just to mention a few of his symptoms. Therefore, he is tired. He isn’t living anywhere near the life he wanted to live. But now, he struggles more than he used to to find bits of joy in his day. It is now a more uncomfortable and painful time versus a time when he could do more things to make himself happy. For that reason, he knows Heaven will be better than his current situation. It is a beautiful place of eternal life. Kayne is in a very spiritual time of his life. Kirsten and I see it and we are doing our best to help him. I love Kayne and it is easy to want to be selfish. For example, we had a great conversation the other night for 30 minutes. We have a few laughs throughout the day. The thing is I can’t be selfish and want him to suffer most of the day for our small amount of together time. Don’t get me wrong, I hate it with a passion. I love that he has touched so many people, but selfishly I just want to go back to the time before he was sick when he was an “unknown” Kayne. I ask, “Why us?” Then I ask, “Why not us?” Do I wish this disease on someone else? No, I don’t. But, I don’t understand why such a good, loving, compassionate and caring person had to get it. There are some evil people in the world. I wonder if Billy Joel knew something when he wrote, “Only the Good Die Young.” This past week we had company over the weekend. Bill and Lila left Friday morning. Cousins Kyle and Laura and the twins spent the weekend with us. Cousin Dawn and Aunt Marge visited on Sunday. Chris Ulmer and Alyssa did a follow up interview on Sunday. The update will be posted soon. If you are not on Facebook, remember you can go to CannonballsForKayne.org website and see all the videos and more information about Kayne. Monday, Kayne had his weekly visit from the hospice nurse and he also met his new doctor in the hospice system. Tuesday, Kayne had a massage from a therapist in the hospice system. Kayne had company Tuesday afternoon. Wednesday, Kayne seemed more tired during the afternoon than he thought he would be so he slept quite a bit. Thursday, Kirsten got away from the house to help Tara work on a book project for Kayne. Before dinner, Kayne had a few friends and his volleyball Coach Swayze stopped by for a visit. Today, Kayne was visited by friends Lisa Bradley and her daughters Olivia and Madelyn as well as Lisa Laughlin. Greg McNair owner of getonthesand.com, the mobility wheelchairs designed for the beach, dropped off one that can float in the water. He is letting us use it for as long as needed. Hopefully, we can get Kayne down the steps and back in the water soon. We had to create some boundaries for visitors to go along with Kayne’s schedule. Kayne is not up to surprise visitors so we have posted a sign to reflect so. We wish Kayne could see everyone, but it’s not possible. He just doesn’t have the stamina to do so. We also realized the visit must be limited in time so it does not wear him out. We also must ask anyone who is visiting to cancel if they are sick in any way. Please do not risk getting Kayne sick. We are thankful for the cards and well wishes sent to Kayne and our family. We thank you for those who donate to the Cannonball Foundation. You can make donations at www.cannonballsforkayne.org or by check sent to P.O. Box 1738 Ormond Beach, FL 32175. Please note, if you are wanting to send a gift to Kayne at this time the best thing you can do for him is donate to his charity and write him a note letting him know it is in his honor. We thank you for your continued prayers and support and we wish everyone a wonderful weekend. Curtis Finley Kayne’s father Curtis.finley@gmail.com The picture is a fun project he participated in with the Ambassadors at LSU.