Kayne attended his 2nd LSU football game Saturday

Dear family & friends, Kayne started week six here at LSU today, unfortunately he was not feeling good on Monday and only made it to one class. Reviewing this past week, there have been some awesome moments with a few to remind you the reality Kayne and our family face. On Monday, September 18, 2017 Kayne attended his classes and as well as a meeting at the LSU School of Veterinary Medicine for new students. After the meeting, Kayne was ready for a good meal so Kirsten took him to eat at Digiulio Brothers Italian Restaurant. On Tuesday, September 19, 2017 Kayne had his first Speech Therapy appointment. We had been patiently waiting for three weeks to get this appointment scheduled. Kayne was able to better understand all that is happening with the muscles in his face. The therapist, Mallory, gave him some exercises to work on and more importantly, gave him confidence to use those muscles that have atrophied on his left side. He is to work on being more articulate and deliberate with his words. He doesn't talk very loud and much of that has to do with the fact that he can't hear out of his left ear; however, we believe leveraging his confidence and strength, he will do better. Kayne did mention during therapy he wished he would have started this type of therapy sooner. Yes, Kirsten and I agree. We had no idea. Neither Shands Children’s Hospital in Gainesville, Florida nor Children’s Cincinnati Medical Center let us know it was something we should have Kayne doing. The good news is we have him working now and we can share this with other families. On Wednesday, September 20, 2017 Kayne made it to all his classes today which included tests and turning in assignments. A couple of his friends Tori and Haley both LSU Ambassadors brought Kayne chicken dinner from Raising Cane’s restaurant. Kayne submitted his application to become a LSU Ambassador. The first selection process was this past Sunday. More on that to follow…. Kayne did have some frustrations about his lack of mobility, neuropathy on right side, and pain in his right knee. On Thursday, September 21, 2017 Kayne was on his own for most of the day. It was a down day for him. Later in the evening, he did have some loss of feeling in his right arm and hand. It is the numbing and tingling sensation we would experience by sitting on our hand. The pain sensation wasn’t leaving so we called the doctor and had his medicine increased for the neuropathy. Chris Ulmer’s with Special Books by Special Kids posted his video with Kayne and Noah. The video can be seen at https://www.facebook.com/specialbooksbyspecialkids On Friday, September 22, 2017 Kayne had an extremely long day. He had his classes and then he attended the Purple & Gold Intra Squad swim meet with the swim team. I flew back to Baton Rouge and took an Uber to the Mall of Louisiana in Baton Rouge to get Kayne an upgraded mobile phone. Kirsten and Kayne met me there and we had dinnerat the food court. Kirsten and I got him back to his room and he was ready to crash and sleep. On Saturday, September 23, 2017 Kayne had a big day. Kirsten’s cousin Kyle Bassett arrived in town to visit Kayne. We went to the LSU campus and tailgated for an hour with the Simon and the Gastinel families. After tailgating, we met with our LSU escort and CEO Scott Wester of Our Lady of the lake Regional Medical Center/Our Lady of the Lake Children’s Hospital. Kayne and our family went on the LSU football field for the coin toss with CEO Scott Wester of Our Lady of the Lake Regional Medical Center / Our Lady of the Lake Children's Hospital! Kayne and I were out on the field for the coin toss. LSU President Dr. King Alexander and his wife, Shenette, were on the sidelines and escorted Kyle and Kirsten onto the field during the coin toss. A little special treatment. They at first only allowed one of us to go out with Kayne. Moose was also on the center stage with us. Several of the referees, players and Head Coach O shook Kayne’s hand. After leaving the field, Kayne was interviewed by Earl Phelps of WBRZ. Check out the segment at the following link http://www.wbrz.com/news/lsu-freshman-with-cancer-flips-coin-at-saturday-s-game We had tickets in the handicap section near the field. Kayne and Kyle left at half time because Kayne was getting tired. It was nice for Kyle to get to spend time with Kayne. Kyle ended up spending the night with Kayne in his room. All in all, it was a fun filled day for Kayne and we all had a great time. On Sunday, September 24, 2017 Kayne and Moose slept in for the morning. Kayne worked on homework and Kyle headed back to Florida. Kayne attended the Ambassador exercise at 3:30 pm. He was excited about the process, but it went a little different than expected for him. Kayne couldn’t hear everyone speaking because he can’t hear from his left ear. He should have spoken up to his group to let them know they needed to speak louder to make sure he could hear everyone. Unfortunately, the group leaders didn’t do a good job including him on the exercises. For example, they did an exercise of crossing a bridge and getting everyone across. Well, everyone but Kayne. Part of their leadership task needed to involve Kayne and figure out how to get him across as well. He needed to get his medicine and headed out and hour early. He was frustrated because he had been looking forward to it. It also brought him a moment of frustration due to his inability to walk. Yesterday, Kayne was still tired and felt like he had no energy. He made it to his first class and turned in an assignment, but headed back to his room to rest instead of attending his other classes. He emailed his teachers to let them know he couldn’t make it to class. It really frustrates him when he can’t make it to class. We encourage him to not be too hard on himself because his body is going to need rest at times. He also received an apology email from the leader of the Ambassador’s program letting him know they recognized the breakdown of their activities plan and program. They encouraged him to continue and he plans on doing so. He has a cold and congested cough so that takes a lot of his energy as well. He will have some medication changes to make him more comfortable and is currently getting his Avastin and he has his MRI appointment later this afternoon. Kayne has a fundraiser for the Cannonballs For Kayne Foundation this Sunday. “Throw Your “Cannonballs” for Kayne” at Myhand Park in Addis, Louisiana. There will be several activities to include face painting, bounce house, Home Run Derby, food and special t-shirts for the event. The event will be from 3-6 pm so if you happen to be in Baton Rouge Sunday come out and join us. Kayne’s goal is to help donate money from his foundation to fund research for childhood cancer, specifically DIPG. We appreciate all the prayers and love from everyone. Remember you can always donate towards the cause at the Cannonballs website www.cannonballsforkayne.org Curtis Finley Kayne’s father Curtis.finley@gmail.com