CureNFwithJack and Pandora’s Box

It has been a while since our last update and lots has happened. So many people continue to keep Jack in their thoughts and actions. We had a record breaking Yard Sale in July, Allison Maffei and her children did a coffee and donut fundraiser which educated about 100 NEW people about NF while raising over $1,000.00. The Budds Family. The Moss Family. The Flynn Family and their daughter Emma. Instead of birthday presents, she asked for donations for CNFWJ. 11 years old. Our 2nd Annual CureNfwithJack Palm Beach Golf Tournament is coming up on September 26th. You can register to play or sponsor by clicking here. It’s going to sell out so do so soon. Our Jack may not be the only golfer named Jack in attendance, if you catch my drift. Our 3rd Annual DC Tourney is October 17th! All very exciting things. We are “moving the needle” along toward a cure. All of these activities and events continue to give us HOPE. HOPE during a time when we can’t see beyond the next chemo session. HOPE when we have to suddenly admit Jack into the hospital for a 2 night stay because he got sepsis. HOPE as we roll into week FORTY-FOUR and within reach of week 52. HOPE that the MRI will bear good results.

I was reminded recently of the story about Pandora’s box. She was gifted the box by Zeus and was told to never open it. Well, she did. And she let out to the world all of the evil and bad things we experience. Death, poverty, destruction, murder, disease, greed, all of it. All released to the world to provide humankind with all sorts of misery. As the story goes, Pandora apparently (eventually) closed the box before it was entirely empty. The only thing left in the box was HOPE.

In the dictionary, HOPE is defined as “an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life”. Sounds about right in this case. By closing the box, Pandora left us with HOPE to combat many of the things she released onto us. To me HOPE is just one of those words. Like faith, or grace. HOPE is a bit different to me though and sometimes serves as a savior. Being HOPEful is different than being “prayerful” in my mind. It’s different than being reliant on fate. HOPE creates ACTION and interestingly ACTION creates HOPE. It is a wonderfully circular process.

HOPE leads the way! It does not sit idly by waiting for something to happen. HOPE makes it happen. It is a force. Not the Star Wars kind either. A real force. Sometimes it has been the only thing that has sustained us during this journey of the past 8 years. Especially these past 11 months. What is amazing to me is that it is derived from other people. Continually. They call, they email, they write, they comment, they post, they “like”, they organize, they participte, they donate, they volunteer. The “they” is YOU. YOU, in turn, are the HOPE. I think that is amazing.

It’s not “blind hope” or “blind faith”. I know we are dealing with serious stuff here. Beyond HOPE I have science, research and brilliant doctors caring for my boy and trying like hell to give him every shot possible. Those elements coupled with the HOPE that you provide is a powerful, powerful combination.

HOPE LEADS THE WAY. Here’s the best part. The more HOPE you give, the more you get back! In the next few weeks we will be ending chemo and learning the results of his treatment. We are HOPEful. We are THANKful to you for that and so much more that words can’t adequately describe. HOPE keeps us going. So thanks. and remember I always close my notes to you with this:

Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that. EVER. #ENDNF, #FNF, #IMWITHJACK

Jake, Beth, Jack, Luke and Grace