Three days of Radiation Treatment to go

Kayne and Kirsten made it back safely Sunday evening, and they were able to avoid the storm. Kayne's radiation treatment ends on Thursday. After his last radiation treatment, he gets to ring the bell located in the Davis Cancer Center. Here is Kayne's personal update from Sunday night 1/22/17. As many may already know, I am in Gainesville until Thursday receiving my last 4 radiation treatments. With that, life keeps changing for the better. In the beginning of radiation treatment, I wasn't walking on my own, the left side of my face was completely paralyzed, and there was little feeling and numbness in my tongue (left side only). Also, I had no hearing in left ear. Now, I can taste slightly on the left, I am much more active and easily walking on my own, and even though the feeling is not normal, I can feel a tingling sensation which is annoying but good news. Unfortunately, I am still unable to hear, but I will keep praying that it comes back. I am almost completely off the steroid. Both I and the doctor want me off of it as it can be a pain in the butt, but is necessary. There was a scare last week because I woke up with a massive headache but we believe it was just the way I slept on my neck which affected my head. Sometimes doing nothing or sitting in a funny position makes me nauseous when I don't expect it, so it's quick fixes like that that I'm learning to adjust for. It's great to be doing good, and I pray it keeps getting better, even with the rough days I may go through to get there. Since radiation therapy is not a cure for DIPG, I will be doing a clinical trial in Cincinnati with the drug called Ribociclib. I want to keep improving and be able to do more of the things that I like to do as time goes on. The good news is, I'll have time at home before I go to Cincinnati the first week of February for final approval into the study with Dr. Mariko DeWire. After the tests in the first week, I'll start the medication Feb. 13th and will have to be in Cincinnati for a whole month for monitoring purposes. What's cool is i will get to see lots of friends while I am there! Can't wait! And happy news is that I'll be able to come home for the weekend in between and attend the community event planned for me on Feb. 11th. I'm super excited to see anyone who shows up and glad I get to participate! With everything going on, life and time seem to be going so fast but at the same time every moment is being cherished. With the diagnosis and finding out the prognosis I have realized to never take anything for granted and enjoy each day more. It's hard sometimes to not get discouraged with how things are or a little upset at certain things but I can now more easily remind myself or the person I'm with how little or "not-a-problem" it is. I can look to the future and I'm hopeful and very optimistic about it. I hope that in the near future I can do the things I like and kind of return to "normal" but still be able to not take the little things for granted. I wish to drive again (safely of course) and surf in the ocean. With my balance being off and the steroid giving me "fake energy", if I were to get in the ocean right now, I may become too tired even though I feel great. I'm definitely anxious to see how I'm doing in a few weeks and months on the medicine. I'm also excited to see my friends as I've been extremely busy and the time I've had to hang out with them recently has been slim to none. Super happy I could give everyone a good update, hoping to see a lot of familiar and new faces on February 11th!! "Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up the other." Ecclesiastes 4:9-10 IF YOU'D LIKE TO MAKE A DONATION Online: bit.ly/cannonballsforkayne Checks: made out to "SBSK" can be mailed to PO BOX 1738, Ormond Beach, FL 32175