Kayne's personal update January 4, 2017

A little late on the New Years post but for a good reason. Life from 2016 to 2017 has changed for many reasons as most everyone knows already. It's definitely more than a 360 that I did 2 months ago but it is a journey I'm willing to take. Also, a big shout out to Christopher Ulmer and his online company SBSK-Special Books by Special Kids for making videos for my story. I look forward to doing them with him because no one has ever documented their experience this way with DIPG. So, currently I have been going to Gainesville each week during the weekdays for photon radiation therapy. The symptoms of radiation that I have experienced are random fatigue, slight nausea but nothing big, and pressure in the back of my head, which could even be from the tumor. The therapy itself is 10-15 minutes so it's super easy and I don't feel anything. I lay on a table and with an (almost) hockey mask on to keep my skull still, a machine makes a buzzing sound and I feel nothing. The first week I started radiation, I could walk, but I was weak and would need lots of help. I was in a wheelchair for the first 2 weeks. Now I am able to walk by myself but sometimes I veer and lean left because of the tumor. Before treatment ends I'll have to get a picture of the machine because it's quite cool. Enough about that though, I have been given the opportunity that several but few can say they have been given. Because DIPG is a pediatric tumor, not many kids are able to document their experience or help raise awareness about not only childhood cancer, but brain cancer and DIPG specifically. Even though it's not the best opportunity to be given, I like to think of it as one. All donations given to bit.ly/cannonballsforkayne will not only be used for my expenses, but after everything I may need, the funds will go toward proper research to help find a cure and help other families in need. The grim side of DIPG is knowing that I am in a palliative care situation. I still have plenty of years to live, I just don't know the condition I will be in. I'm more anxious to see what I will be doing in maybe a year instead of being scared. There have been times where I ask myself and God the, "Why me?" But I immediately tell myself to stop. Yes, there are people doing what I have never done, eating whatever they want, doing whatever they want, criminals doing what they do. But instead of looking at it like that, I now look at it so much differently. The little things most of us consider problems are no where near problems. Obviously you hear all the time, "Don't take life for granted." It's so easy to say but the past 2 months have made me realize I took my little complaints and things I did for granted. When I was in the hospital I knew what was going on but I didn't think about how much life was changing for me. I had plenty of people reach out to me and say they were praying. When I got home there were already gifts and cards to open. I was in shock because I was not used to it. It was life changing knowing that I used to make cards and send little things that say, "Get well soon!" It was a little hard to realize how much life had changed, but I've definitely accepted it, as seen. I think even though it's a difficult time, I gladly say that it is easy for me to be positive about my situation. I have thought about the negative sides of my diagnosis but I have told myself in those times that it's not worth it to dwell on them. Why think about death when I can think about life? I'm not in the best condition now, but I can be sometime soon. “With man it is impossible, but not with God. For all things are possible with God.” ~ Mark 10:27 ESV I am so thankful that I have support from not only my friends and family but people all over the world. It is crazy knowing how many people now know my name and have prayed or done something to show they have thought about me. I can't thank everyone individually (obviously) but I am so thankful and appreciative of anyones support whether it be a cannonball or a small prayer before chowing down some delicious food. I hope that with all the people that know my name and my diagnosis, I can be a beacon of inspiration worldwide. I will try to make a few more posts as I go through treatment. I have gotten a little movement back on the left side of my face. When I try to shut my eye fully, it almost shuts. I still can't feel on the left side of my face and my taste buds are still gone on the left side. I also still cannot hear on the left. I am praying that I get it fully back, but I do not know what the future holds. These symptoms are because a few of my cranial nerves are being pressed by the shape and size of the tumor. It is great for me to see progress plus I have been able to build some muscle back into my legs and tone in my arms. I'm walking without assistance and have gone to the beach and stuck my toes in the chilly water on the weekends I was home. I am super glad that I was able to get in the water last Thursday because I hadn't been in the water since November 19th. I was able to do some strokes and despite the thought that I would get sick doing a flip-turn, I did 5 (not all at once but I did what I we thought I couldn't do). I was able to do a lot of breaststroke, a little freestyle and backstroke, but no butterfly because I wouldn't be able to do a full stroke in the small pool. 2017 is going to be more of a new book rather than a new chapter. I have strengthened my faith with God and entered hand in hand with him. Glad I could start 2017 with the people I love most, my family and friends! #cannonballsforkayne #DIPG #thecurestartsnow #braincancer #childhoodcancer https://www.facebook.com/groups/cannonballsforKayne/permalink/392457557755520/