Jake's Blog

September is Childhood Cancer Awareness Month. A Father's Message.

My friend, Steve Paris' daughter Mary Elizabeth died last year.  Cancer killed her.  12 years old. Can you imagine that pain?  I attended her service and was struck by a number of things.  I was amazed at the grace and dignity of the Paris family. In what is the worst time in their lives, they rose up and celebrated Mary Elizabeth and her impactful life.  Steve, who I did not know well at the... Continue Reading

Tough Question. Tougher Answer. Toughest Kid.

On Friday, Beth and I took Jack in for his MRI.  We have made that trip so many times with him.  A few days before the feeling starts to kick in. One I can't describe, one you have to experience, and one I hope you never do.   The anticipation, the loss of control, the inability to change the path again for my boy all comes back.  I resent the familiarity of this process so much.  I wish it were... Continue Reading

Bill and Lilly Ann

Lilly Ann and her parents.
Other than my wife Beth, nobody has written here on this blog.  Until today.  Bill Brooks is a fellow NF Dad who has amazed me since the day I met him. He is passionate, compassionate, smart, funny and NO time for BS.  His daughter, Lilly Ann, has NF just like Jack but has had many challenges and has approached them with a grace and dignity that astounds me.  I have met her a few times and I can... Continue Reading

Auction items! 5th Annual CureNFWithJack Golf Classic

1980 Team USA Captain Mike Eruzione SIGNED jersey
Mike Eruzione SIgned Jersey, Captain of TEAM USA 1980 Gold Medal Zac Brown SIGNED acoustic guitar! Beautiful Home on Kiawah Island! Rodney Harrison SIGNED jersey Chipper Jones SIGNED Braves Jersey Brian Urlacher SIGNED jersey Dallas Cowboys 1995 TEAM SIGNED Ball Dan Marino SIGNED football Joey Lagano SIGNED Car Door and front end BO Jackson SIGNED football These are just a FEW of the items... Continue Reading

"I don't need that. Just give me the mask and let's do it".

My saddest moment from the film Jack's Journey.  His port I loved and hated.
This week is a big week for Jack and the Burke family.  You may recall back in October of 2013 Jack started his chemo regimen.  Prior to that he had to have surgery to implant the chemo port in his chest.  Well, this Thursday after almost 27 months he is going to have it removed!  The doctors decided that he has had enough non-growth and stability in his brainstem glioma that the port can come... Continue Reading

Goodbye 2015! Hello 2016?

Happy New Year from Jack and all of us here at CureNFwithJack.  I should start by saying thank you to all of you have donated their time, talent or treasure.  We are deeply grateful that so many of you have made Jack's battle part of your life because I know you each have your own struggles.  We NEVER take for granted what you give us through the myriad of ways that you do.  For many, this day... Continue Reading