Kayne and Moose hit the beach

Hello family and friends- It was a little over a week since my last update and of course, we have had quite a bit go on since that update. Kayne had his first clinic visit back to University of Florida Shand’s Hospital. He met with his original medical care team to include Dr. G (Gururangan) and physical therapist, Jessica. Dr. G. explained the benefits of continuing the Avastin and Kayne decided to stick with it. Jessica, his physical therapist was happy to see Kayne, just as he was happy to see her. She checked his neuropathy and determined he has lost feeling in parts of his right foot. We will be extra cautious with him during his pedicures and moving him around outside. Angelle and Aimee made it to visit last Thursday and brought our car back for us. That was super sweet and helpful as I didn’t have to fly back and make another trip. Kayne is into trying new things on the menu. He doesn’t want the same “stuff” he has always had before. There are some things he can’t eat due to the difficulty swallowing, but he wants to be adventurous in eating. He told me it is one of the few things he has left and he wants to take advantage of it. That means we will order or fix what he wants. He likes trying different restaurants and the different menu items. Have car will travel. Keagan came home to visit last weekend. It was good having him home for a couple of days. Keagan, Angelle, Aimee, Kirsten and I took Kayne and Moose to the beach Saturday. Kayne and Moose took a nap under the umbrella before Kayne decided he wanted in the ocean. We put his lifejacket on and Keagan and I walked him into the ocean. We were trying to get him to “duck dive” under the waves to get him where it was calmer and he could swim. The lifejacket prevented him from going under the wave and pushed him backwards and under for a second. Keagan and I had a hold of him, but Kayne would go under the water some. A few times when we checked on Kayne and thought we should get him out. Kayne would scream “I’m fine! This is fun! Kayne let the waves take him all the way into shore on the sand. Needless to say, he was loaded with sand from head to toe and all inside his swimming trunks. It was a long shower to get the course sand off him. He had a blast, but it wore him out. It wore him out, but he was determined to go to the movies with his brother and Max. Keagan and Max took good care of Kayne and Moose escorting them to the movies and picking up Chipotle for dinner afterwards. Sunday, Kayne was definitely exhausted. It was a low-key day. Aimee and Angelle made it back from St. Augustine and we dropped them off at the airport. It was a sad goodbye. We all really became close since June when we first met. Living with them made us even closer. We look forward to their next trip over. Monday, we met with Vitas Hospice and Palliative care nurses. We discussed a plan and what they can help us with including different equipment available and so forth. At this point, we will see a nurse once a week. Kayne will have a massage therapist come at least once a week. The social worker and chaplain will also visit weekly. We are in the process of seeing about a physical therapist and speech therapist being able to come to the house. Kirsten helped Kayne make a schedule for his therapy exercises for days when he doesn’t have a true PT session. As we need it, the aides also can come out to help with different things. Right now, we are hopeful we can care for Kayne for as long as possible. We keep praying! Our friends, Robyn and Jai Stahl helped us out Monday again. This time, Jai built wooden ramps for the wheel chair to go up the steps. This helps us out with the manual wheelchair, but also gives Kayne some freedom with the motorized wheelchair we purchased. The side walk goes for miles along A1A so Kayne can get out on his own like he did at campus. Not that he will go miles, but everyone needs an alone moment or two. He and Moose can go for a walk and ride without us. The Grandparents, Bill and Lila arrived Monday and Tuesday respectively. We didn’t have much go on Tuesday, however on Wednesday Kayne had medical appointments in Gainesville, Florida. He had PT, clinic and his Avastin infusion. Bill and Lila accompanied Kirsten and Kayne for the day. Thursday, Kayne rested up so he could go to the movies with his friend Dalton, Bill and Lila. Kayne wanted to go, but he also wanted to make sure I took Kirsten out on a date. He talked to me on Wednesday to let me know and to make sure I put together a plan. I decided to do the one thing Kirsten loves to do. Something we hadn’t done together since last October. I took her on a motorcycle ride. The gang headed out for the movies and we rode the bike just North of St. Augustine. The weather was beautiful. It was great to ride and see the ocean and the sights. We came back to Flagler and had dinner at the Golden Lion. We sat on top looking at the ocean with the cool and I mean cool breeze blowing in on us. Okay, it was cool for me because I didn’t bring my jacket up. Kirsten was fine. She asked, “don’t you want your jacket?” It was still a nice evening. We made it back home to get Kayne’s medicine and kiss him goodnight. We also had a friend, Tara stop by and work on pictures to put together a book for us. Tara helps do a lot with the Cannonballs For Kayne Foundation. She has been a blessing to our family and we are thankful for her. Bill and Lila headed out this morning before the sun came up. They left around 5am to head to the airport and fly home. The social worker and chaplain visited with us this morning. Afterwards, Kayne and I had our own day out. We went to the movies to see Thor. We then went to Outback for dinner and Hershey’s Ice Cream store for dessert. It was great spending some alone time with him. Keagan has a swim meet tomorrow at Florida State. The Bradley’s are going to be in Tallahassee and are taking him to dinner tomorrow night. They are a great swim family and have been gracious with helping us out. Cousins, Kyle and Laura are visiting tomorrow with the kids. Aunt Marge is back in Florida for the winter with Bill and Dawn. Dawn and Aunt Marge will also be stopping by this weekend to visit. Chris Ulmer and Alyssa will be visiting on Sunday with plans to do another follow up interview with Kayne for Special Books by Special Kids. One thing we learn in life is when one thing happens, it seems like you get several things happen all at once. Allow me to digress our “Life Happens” stuff. Our 2nd floor AC is now dead and must be replaced. Two sinks started leaking and one must be replaced. Keagan’s car is down and on Sunday as I went to roll the window up in our car it broke. I get the car in the shop for repair and ask them to change the daytime running light. They must take off the bumper to put in a new daytime running light. Really! Why do they make cars so complicated these days? We only had minor damage from the hurricane, but it is damage to fix. Our fence was broken and I am giving up on the company that installed the fence to repair it. It shouldn’t be that complicated to come out, give an estimate and get us on a list for repair. Obviously, it is because I am giving up and will select another person or company to do the repairs. I told Keagan to be prepared as life tends to throw stuff at you at once. Also, the unexpected car repair or home repair will always happen at the worst times. I must thank my father-in-law, Bill for working on the sinks. He got one faucet fixed. He tried to fix the second one, but the main hardware is unable to be repaired so a new faucet is the fix. Ending on a positive note. Coach Cara Swayze from Spruce Creek Face Timed with us this morning. The school was assembled to tell Kayne they supported and loved him. They raised $1,000.00 for Cannonballs for Kayne Foundation. Once a Hawk Always a Hawk! Cards or words of encouragement may be sent to Kayne at P.O. Box 1738 Ormond Beach, FL 32175. If you have a desire to send Kayne a gift, will you please donate that amount to the Cannonballs Foundation and let Kayne know. It will mean the world to him knowing you are supporting a way to help other DIPG families and to help fund research. You may send checks to the P.O. box or via Paypal on the foundation website at www.cannonballsforkayne.org Much love to you all. Please continue to pray for Kayne and our family Curtis Finley Kayne’s father Curtis.finley@gmail.com