A Hero meets a Legend on a roller coaster

There is so much to write about and share with you.  First and most importantly is that Jack is no longer receiving chemotherapy treatments.  He has endured 48 weeks of this treatment and we are now glad it is over.  On the very last week he came down with awful, debilitating mouth sores and perhaps the last 2 weeks were the worst of the entire process.  So there is joy in that he has completed his chemo but anxiety with the impending MRI next week to see what effect chemotherapy had on shrinking his brainstem glioma.  I will write more about this later but we always, ALWAYS wonder if there are others ahead because that is part of the beast of Neurofibromatosis. Joy at good scans, relief, anxiety, fear…part of the rollercoaster ride.

Once again we had our annual golf tournament in Palm Beach Florida last week! As the attached photos show (and the title of the blog indicates) we had a very special guest at our tourney. Jack Nicklaus and Mrs. Barbara Nicklaus stopped by to say hello and offer their support to Jack.  When we first started to plan our golf tournaments 3 plus years ago here in Atlanta I always thought that if we could partner with a “golf pro” involved it would bring such validation to NF and CureNFwithJack.  Of course because of his stature, philanthropy and his name, Jack Nicklaus was always the ultimate person we would like to meet.  As life and luck have it, his son Mike played in our first ATL tourney.  He is a good friend with Dan Allen and they were inspired to host their own tournament in Florida.  Before we knew it last year we had the support of the Nicklaus’ and Mr. Nicklaus even signed our custom flags.  Alas, due to his schedule he could not attend last year.  This year was different.  Just a few days after Jack’s chemo was over we traveled to the tourney and the next day we meet Jack Nicklaus!  Amazing! 

Mr. Nicklaus was gracious.  He was welcoming and was only matched by my “favorite Nicklaus”, Barbara. It was quite apparent that both love children and their life work for children’s health issues indicate that as well.  Barbara asked little Jack to “autograph” her CureNFwithJack hat and he quickly obliged for her and for Mr. Nicklaus.  Mr. Nicklaus took photos, shook hands and signed a few autographs for our guests and that helped make it a great day.  I have to say, I was overcome a bit with emotion seeing Jack and Luke with Jack Nicklaus.  It really was a dream come true.  We are doing something good here.

Ryan Berube played.  He won the GOLD medal in Atlanta in 1996 and he was kind enough to bring it along so Jack could wear it.  He too was kind with his time and said he looks forward to next year!

At the top of the list once again, is Michelle McGann.  She has been such an advocate and friend to all of us and despite a very hectic schedule she flew home that morning to play in the tournament.  She fills a room with her infectious personality and was giving some instructions on the putting green to our friends and neighbors, the Toeppner’s!  

Our friends from Atlanta, Jack Flynn, Jeff and Jen Toeppner (and kids), Jack Frank and his brother Greg Frank traveled to be with us!  Amazing.  My friend Patrick Boyle from Massachusetts brought two friends with him to play.  Perhaps the coolest part of the day was the putting contest.  About 60 people attempted to make a 30-foot putt for a prize of a custom-made $400 putter.  After about 20 people, Taylor White hit it!  Another 30 or so players took a shot and missed.  Then Luke, Jack’s brother stepped up.  And drained it!  It was awesome and the crowd went crazy.  We had a “putt-off” and Luke won the putter.  It was so great for him.  He is so kind to his brother and never complains about not being in the limelight.  I loved that he got a piece of recognition.

A memorable day indeed thanks to the hard work of a lot of people and volunteers.  Dan Allen, Mike Nicklaus and Pat Kelly pulled it off again.  All of our volunteers and most importantly, our players made it memorable.  We continue the fight to CureNFwithJack.  We continue to raise awareness and dollars to realize that goal.  

It is a roller coaster ride.  There are thrilling moments.  There are scary moments. There are smiles.  There are tears.  Here is the thing.  We have to stay on the ride. We can’t get off.  So we manage the tough parts and embrace the joyful and thrilling parts.  You know, YOU can get off. YOU don’t have to ride, but YOU do.  All of YOU.  I think riding a roller coaster alone, even for the bravest amongst us, is a lot scarier than riding with a whole bunch of full carts of people.  YOU have got on this ride with us and YOU ride and ride.  Your hands are up and YOU are smiling on the joyful parts and your teeth are clenching at the tough parts. At the real scary parts, maybe YOU even say a prayer or two.  

I will be honest I don’t like roller coasters.  I want to get off. I want you to get off too.  Someday we will.  Neurofibromatosis WILL be cured. Neurofibromatosis WILL have effective treatments and we will get off this ride.  Until then, thanks for being with us, for that reassuring nod and wink as the safety bar comes down to lock us in.  The look that tells me YOU are with us for the ride.

Lastly,

Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that. EVER.

Jake, Beth, Jack, Luke and Grace

 PS

Follow Jack on Twitter @curenfwithjack or on Facebook