The Good, the Bad and the Ugly
Sorry for the delay on this update about Jack. There is a lot to share. Let me first explain the title of this blog. As the attached photo shows, we had the opportunity to meet Clint Eastwood when he was in our neighborhood filming his latest movie. What a wonderful person. 85 years old and after a 10 hour day of filming he could not have been more gracious with his time. He talked with the boys, signed autographs and told Jack that he would "wear my CureNFwithJack shirt with pride." It was a very neat experience and it was the first day Jack was outside post surgery.
Of course, Clint Eastwood is an American icon. He has about 65 films in his filmography and is an incredible talent. As I was standing with him and watch him interact with Jack and Luke I thought about how great the moment was and that I was standing and speaking to "Dirty Harry", "Outlaw Josey Wales" and "Walt Kowalski". And then I thought of his character "Blondie" from the movie "The Good, the Bad and the Ugly". Funny, right there it hit me. That movie and our struggle with NF, there is not a better description. As I watched Jack talk with Clint, I could see he was still weak from surgery and fighting his pain to meet "a real live director". Despite the pain and the stitches, Jack hung in there tough rebuking my earlier requests to leave.
While we have had all 3 elements of NF, our path has had a lot of "Good". We have raised over $1M for NF research so far. We have created CureNFwithJack to raise dollars and awareness toward a cure too. We have experienced immeasurable generosity from friends and strangers alike. We have seen a community, a nation of people really, rally behind Jack. We have broken fundraising records by having HUNDREDS of people run in their underwear in the COLD for Jack. We have met amazing people famous and otherwise. We have been on TV and radio to spread the word about NF and continue to be hopeful for a cure! Jack came home from the hospital to a fully decorated guest room with his favorite Halloween themes and posters created by friends and neighbors and their kids. No doubt that this "Good" helped him heal quicker!
NF is "Bad". Like many families that deal with NF, we have had our challenges too. You all know most of it. 52 weeks of chemo. Jack has endured surgery to reduce a plexiform neurofibroma in his left eye orbit at age 6. He had brain surgery at just 10 years old. The pain from this most recent surgery was described as this: "Imagine your worst muscle cramp. Multiply it by 100 and then layer a broken bone over that." We have had countless MRI's and scans. There are so many NF families that have dealt with this and MORE. We need to fight to help all of them. We need to continue to do the "Good" and eliminate the "Bad".
NF is ugly. What the disorder can and does do to people is just ugly. It is relentless. It does not care if you are 4 years old. It does not care if you are a father or mother or aunt or uncle. It will try to hurt you and in some cases, try to kill you. Sometimes it does and that is ugly. Sometimes people are mean and don't understand the disorder and people act ugly. They say or do things that are ugly. The disorder can impact even those who don't have it themselves. We have to stop it soon.
We will win. The Good will triumph, just like in the Clint's movie. Jack's surgery was successful (we hope) and we will know more in a few weeks. His pain is essentially gone from the surgery and he started back to school full time today. His friends, classmates and teachers are all so welcoming and anxious to see him return and will do their best to support his transition back. It's Good. He will get caught up soon. He will recover and while we take some relief in that we know that we must continue to be vigilant. We will always embrace the Good that is the majority of our experience thanks to people like you but we would be foolish not to recognize that it can change in a moment. Not just for Jack but also for other NF patient and their families. So keep doing what you do. Say hi on FB or on this website. Go to a tennis or golf tournament. Attend a wine tasting. Run in your underwear in February on one of 13 CureNFwithJack teams! Send prayers and good thoughts. Eliminate the Bad and the Ugly.
Stay with Jack.
Tomorrow there is hope and you are among the reasons why. Don't ever forget that. EVER. #ENDNF #FNF.
Jake, Beth, Jack, Luke and Grace