Sometimes magic is not about the tricks…
2014. Quite a year for the Burke’s. For many reasons it is one I am not too anxious to ever repeat. Yet in the midst of some pretty terrible circumstances we found and experienced incredible caring, grace, love, and triumph. The accompanying video is Jack’s entry into his school talent show last week. He decided to do 3 tricks. Our good friend, Duane Codrington was there to film his beautiful daughter Sammie performing and I asked if he could film Jack too. You may recall the film Jack’s Journey…that too is Duane’s work. It occurred to me as I watched Jack on stage that there was magic just in that. He was on stage. He was energetic. He was funny. He was confident. He was alive. What an incredible thing. If we were just in the previous December this could have never happened. NF and chemo were crushing Jack. NF and chemo were crushing us. Yet, there he is with his cape, magic hat and wand killing it on stage with improvisational banter. I was overwhelmed. He is so brave. Confident. Funny. I hope he is always that way. So yes, there is “magic” on this film but it is not the tricks.
As we wrap up 2014 and roll into 2015 we still have a battle ahead. As many of you know, Jack beat back his tumor but it is still on his brain stem. Small enough to be watched but chemo is not needed. We will start 2015 with an MRI that will hopefully provide us good news that will allow him to have his port in his chest removed. The MRI will reveal stability and no OTHER tumors. And that will be our baseline for the fight of 2015. We will once again run in our underwear to raise awareness. Jack, undoubtedly will once again garner enough support and his situation implore more people to help him fight and break fundraising efforts.
We will host our golf tournaments again. They will be fun times. They will be hard work and countless volunteers and friends will plan these events to be the historical successes they have been. Leaders in the fight like Dan Bowes, Matt Benson, Dan Allen and Pat Kelly will insure the success. Our neighbors and friends across the country will have their own fundraising events, wear t-shirts, hats and bracelets and tell the world about CureNFwithJack. People like Jack Flynn, Tracey Stack, Conleth O’Flynn, Tom Pattillo, Jeannine Jannot, Dave Stordy, Mason Gates, Stewart Rahr, Joanne McKay, Kelly O’Hearn, Beth Penney, Jennifer Barr Jack Nicklaus, Michelle McGann, Ryan Berube and Randy Bitting will organize, support and participate in events. Helen Brown will continue to tweet about Jack. Ryan Eversley will race this year perhaps the most important year of his career with Jack by his side. Literally and figuratively. His friends who have become our friends and fighters will do the same. Andy Lally, Spencer Pumpelly, Ashley Parlett and Melissa Eickhoff. Countless others who I cannot name will make a diifference.
New friends will be made. New advocates will step up. Others who have done much will continue to do what they can to help. Researchers and scientists will continue their work toward a cure funded in part by the work of CNFWJ. Barriers will be crossed. Hope will continue. Perhaps 2015 will see a treatment for NF. Inspiration will come from families like the Lee’s, Barabant’s, Bruno’s, Leathers’, Moss’, Watts’, Watkins’ and so many more who battle every day to find a cure for all those with NF.
Finally, there will be vigilance, tenacity and determination. That will be our continued call. It will be our journey again and for every year until there is a cure. You will decide to share in this to whatever level you feel comfortable and it will be sheer brilliance. You will know the difference you make by simply liking Jack’s page on Facebook or making a comment on a photo.
2014 was not magical. I am glad in many ways to see it go. I will tell you this though…there were plenty of magic moments, many of them because of you. So we wish you all a great Christmas and a phenomenal 2015. It will be for the Burke’s! Pastor Steven Gibbs at church service today told us that we should hope big. “Don’t get you hopes up” is the wrong message. I was stunned at the timing of his speech today. We DO HOPE big at CureNFwithJack. And we realize that HOPE soon.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER
Happy New Year!
Jake, Beth, Jack. Luke and Grace Burke
