Tonsils, Triumph and Tribulation

It has been several weeks since our last update.  Lots to report and as I warned before, if you want to read on…it is a combo of good and bad.

Let’s start with Jack’s biggest supporter. Luke.  He has been suffering for quite awhile with tonsils and adenoids thatjust constantly make him sick and uncomfortable.  Tomorrow he has surgery to remove them and get on a path of comfort and restful sleep.  He is going to need some TLC and we are all ready to give him that attention.  He’s a tough kid, a brave fighter but also just 6.

As you may know, CureNFwithJack hosts golf tournaments to raise money and awareness.  The last one of 2013 was last Friday in Clifton, VA hosted and organized once again by Matt Benson.  Matt has been a huge force for Jack and once again came up big for him and all those impacted by NF.  Through his work, networking, passion and focus he had the most successful event to date.  

Along with Beth, the unprecedented medical symposium happened concurrently.  Folks, we had almost 20 physicians from across the country together for the first time in one room to discuss how better to care for NF patients and find a quicker path to treatment and a cure!  The doctors were actually thanking US!  First of it’s kind…but not last for sure.  Stay tuned for results reported back from this historic meeting.

In its second year, CNFWJDC has 94 golfers!  A 25% increase over 2012.  All involved had a great time and I have the pictures to prove it.   http://tinyurl.com/las49d3 

Other NF families were in attendance, which always make it that much better.  Through the generosity of attendees, partner supporters and sponsors including Long and Foster and the Stewart Rahr Foundation we were able to raise close to $70,000!  CNFWJ annual total for 2013 is going to approach $180,000!  An astonishing number for us and a triumph for all of you who have supported Jack with your time, talent and treasure! 

We came home on Saturday to a clean house thanks to the O’Brien family and a team of professionals helping us maintain a clean, safe environment for Jack.  Also, our friends Brenda and Kevin Miller decorated our house for Halloween knowing how much Jack loves this holiday.  After 11 hours in the car, we approached our house lit up in orange and ghouls, ghosts and goblins ewere verywhere.  Needless to say both boys were thrilled! Thanks to family and Jeannine Pattillo and family Gracie was well cared for too.

The road that we did not want to walk starts next week.  Jack will begin a rigorous course of chemotherapy on October 8^th and will continue to do so for 15 damn months.  He will make it through this challenge with the knowledge that he has HUNDREDS, maybe THOUSANDS of people cheering him on and “holding his hand”.  It helps.  Trust me.  I will be updating again soon and as always if you have questions for me or a message for Jack…fire away.

 

Thanks very much and F NF!