Kayne's Personal Update

It’s Kayne once again, but with a deeper and more informative post. The past month has been a whirlwind for us, but even more so this week. Decided to let everyone know what’s going on in my mind and more. I cannot begin to explain the appreciation I have when I see comments and the support everyone shows me. I hope I can keep expressing the way I feel every so often through social media, even though it feels like forever in between. We met with the eye doctor at Cincinnati Eye Institute for the second time. He explained that I haven’t had success in lubricating my eye and it seems to still be very dry which is causing problems on the cornea. One of the options I have is surgery sometime in July that will truly help me close my eye, but still be able to utilize it and see. The surgery would be a gold or platinum weight placed in the upper eyelid, a pinching of the side of the eyelid closed, and then raising the lower eyelid naturally. I am considering this option, as well as possibly just seeing if pinching the side of the eyelid closed would work in the near term without having to be put to sleep. The drops and ointment don’t provide me relief, but I refuse to stop them as I don’t want the condition of my eye to get worse. Unfortunately, with my eye not closing it is harder to enjoy simple tasks and things I used to. I can manually shut my eye with my hand, but how annoying is that to do almost every minute. Sometimes the vision gets blurry after I put an eyedrop in it and I feel it annoys me even more. I wish to be able to comfortably close my eye once again, as it’s a different type of suffering to experience this. I’m no longer sitting in bed sulking with nausea or weakness, but I am not enjoying my life the way I would love to. For some time, I could let water run down my face, but now my eye stays open enough for water to truly get in and aggravate it. Since prom, I have seen the paralysis come back on the left side of my face and it was especially noticeable Easter weekend. When I smile, it looks like there is no expression at all. I am more disappointed that the palsy went away and came back so soon. The care teams have said that it could just be a post-radiation phase and part of pseudo-progression. Even though I finished the actual radiation treatment in late January, it could still be having some effect. I pray every day that I start to have relief again because I truly want to enjoy every minute I have of my life. Finding out the MRI results today from Thursday definitely could have had a better outcome. I was able to continue on study with the 3rd cycle of Ribociclib but I face different challenges together with my family. We learned many things and drank from the firehose once again. The information we received was needed, but I wish we didn’t have to hear it. We learned that the DIPG tumor itself (on the pons) is stable but there are cautionary spots elsewhere that have enlarged from the previous MRI just a bit. Dr. DeWire said this could be due to post-radiation effects, the Ribociclib, or possible leptomeningeal disease, but she also emphasized that it could be something else and only time will tell. In May, I will have another MRI to help reveal more of what is going on inside my brain. I will forever pray for the knowledge and answers that God graciously gives to me. It is so unfortunate that so much is unknown not only about my tumor but many other children. Every day there is something new to pray about whether it be about me or someone I know. In recent weeks, the mental impact everything has had on me has been a bit devastating. I hit an emotional low on the plane ride up to Kentucky due to everything becoming so visual. Upon arrival I come to the realization I wouldn’t be where I am if I hadn’t gotten cancer. This always seems to pop up and it causes some raw emotion to be shown with each of my family members. I realize more than ever that my family is more than everything to me, and breaking down with them are moments I can cherish forever. I have been able to talk a little about what-if’s with my mom and the care team. It breaks my heart to have to speak about this, especially to the ones I love. I wish to go back in the past and enjoy my times once again. It pains me sometimes to think about what I had, and what I seem to have lost. Every day is a new day though. God has shown us that some doors can be closed and others can be opened. I am going to continue swimming, working out, and stretching my limits, despite my diagnosis. I know my limits more than anyone, and with God, anything is possible. I will forever continue to pray and never give up. With DIPG there may be little hope, but with God there is unimaginable hope!