Kayne wrote a post update tonight. Long but worth reading! Class starts tomorrow.

Hello friends and family- I hope you enjoyed your weekend! I'm not going to lie, it has been a challenging week. We got Kayne moved into the dorm on Wednesday, but his ability to walk has really declined in the past two weeks. We put a rush on a wheel chair. Kayne felt like he couldn't do it on Saturday and we encouraged him to try. We worked using the Dementor to pull which he has done, but we just got the wheel chair and its going to take a few weeks to get him trained fully for that. We decided Kayne would just wheel the chair. Well, it is a long way across campus and Kayne needs every bit of energy he can get. We began searching for a solution with an electronic wheel chair. Fast forward to Sunday and our host family, Chip and Aimee Simon's best friends had a medical scooter they were not using. Brand new that never got used. They are letting us borrow it for Kayne. What a blessing! We thank them dearly. Kayne has much more confidence about getting to class and around campus now and he practiced with Dementor and no problem. Sure they may have a hick up tomorrow, but they will make it. Did I tell you he loves this dog The Moose? Please take time to read his post he shared on Facebook tonight. Love to you all. Friday July 29th our family faced troubles once more. I (Kayne) felt as if I was being re-diagnosed due to my health condition. The storm has been brewing since God knows when, but it started raining again. Instead of being a little more cloudy and sunny, the clouds have come back in to start the process over again. And, again, there is a new meaning to my life. In late November, I was diagnosed with DIPG and didn’t fully understand how cancer and specifically my brain tumor would play in my life. I went through radiation on the pons because that is where the tumor was located in my head. I responded well to this treatment of Photon Radiation Therapy and afterwards enrolled into a clinical trial only a month after completing radiation. I stayed in this trial with Dr. Dewire but was later taken off study due to spread of disease. The tumor cells were stable in the pons at the time, but they had traveled to the frontal horns and my ventricles. I started another 30 treatments of Photon Radiation Therapy in hopes that it would help stop these cells from growing. My family and I received the news after an MRI on the 28th that radiation had not worked like it was intended. We noticed I was changing a little, but never had I thought it was progression. Both tumor sites had grown rapidly and quite furiously. We made the decision to stop radiation due to it losing its benefit. Then a day later I was at Lake Cumberland surrounded by plenty of family. I was able to relax throughout the weekend, but even I knew the upcoming week was going to pull me back into that storm. On Monday we were back home at my grandpa’s, but with a little twist. As many know we came in contact with a lovely organization called ‘Trained And Maintained’. The trainer, Susan, met with us this week and since then Dementor (the English mastiff pictured) is now called mine after our week training. It is odd to think I have a companion such as him. He is a gentle giant pupper that I am trying to figure out myself. I am also trying diligently to hang out with my childhood friends before I head off to LSU and college. It is all very exciting to me as I practically start a new life, but with a major twist that many people know about. There are plenty of things that I wish could be changed, but my humor keeps me upbeat and my family keeps each other sane. My plan for the future is to enjoy college to the fullest and keep truly living. I intend to keep fundraising and spreading awareness from the help of friends and the collegiate network down in Louisiana. Even though my family and I never expected the news to come so soon, I honestly had not expected much when they wanted an updated MRI and a day later a doctor appointment. I had hoped for the best, prepared for the worst, and expected nearly nothing so that I wouldn’t fall down and stumble in the storm. Many say I’m strong, inspirational, ask me how I do it. It’s simply my personality. I was very sad in March. I couldn’t sleep. Things were so unorganized in and out of my home with all of the traveling. I wasn’t comfortable and the same is for the new news. BUT, I have said this many times to myself and others that ask how I’m still positive… “If I remain sad for the rest of my life and grieve over what MAY happen, I will never have a happy life again.” I take each day differently and see the good things even through the bad. It’s not always easy, and there are plenty of days where I want to throw a fit because I used to be able to do something, and my body restricts me from doing so now. I may not “beat” cancer, but it’s not like I gave up upon diagnosis. I feel I have done my part as a human to do the best I could for myself and others without interfering too much with the way I live. I was still able to graduate high school and now I am heading off to college. I was able to start my foundation and keep it going through my wonderful Mom who graciously posts almost daily and helps run things behind the scenes. I have not stopped living, and that is why many people believe I am beating cancer. Stuart Scott said “you beat cancer by how you live, why you live, and in the manner in which you live.” This quote to me is a part of my motto. Cancer may be affecting me physically and mentally but I still get through the days and do the things I love. I didn’t expect to make a post about anything due to me thinking after radiation I would have a nice “it worked and I’m headed to college” type post for the page. Instead my family was met with a blow to the body. I am attending college despite the fact that I am still living with a very serious terminal diagnosis. That week we signed many papers to ensure my wishes upon death are fulfilled and the care I receive is not decided for me. Although it brings great displeasure to my parents to help me fill these things out, it is so much better than things getting worse for me and them making what they feel is a choice I would or wouldn’t like. It will be tough, as usual, but I know with the support of family, friends, strangers, and even myself as I go through it, my parents will do great if things are to get worse. My symptoms are seen and unseen. I currently still have a deep palsy on the left side of my face, cannot hear on the left, and an increased numbing feeling on the left side of my face. My blood pressure has been consistently elevated a bit in the recent weeks. This is typical and could be from either tumor or steroid or both. Steroids to me are a nuisance but I feel right now they are what I need for me to at least start college without headaches and worsened symptoms. I have had pain in my right leg and numbness in the right side of my body and I can’t quite figure out why. As time goes on, we will deal with situations as they pop up and keep preparing for things that may happen. Decisions still have to be made and I know that will never go away. I plan to live out my life with new meaning while attending college with Dementor and alleviate pain through symptom management throughout my time there. I know I will have plenty of friends and staff in Baton Rouge to help me out along the journey and I am touched by this. Thank you once again to every prayer warrior out there! Although the situation isn’t how we intended, we all still know God is in charge and I have a plan with a purpose. Again I cannot thank each follower, friend, and person that thinks about me enough, because without you I couldn’t have fundraised and helped the DIPG community. I will keep up the good fight and make updates from myself periodically. More so using Instagram but I will link the two accounts and make sure to share it through Cannonballs For Kayne on Facebook. I am grateful to everyone that has helped and supported me since the beginning and also our newest page followers. We were able to get donations that alleviated the full cost for Dementor. He is so loveable and always seems so tired, but in truth, his face is a fool because he LOVES to play and train. This makes my heart happy. I cannot wait to attend LSU classes tomorrow and even though there are still many unknowns in my future, I am excited to continue this journey I embarked on 8 months ago.