Lesson Taught…Lessons Learned

As I write this update, Jacko is getting ready for WEEK SIX of his chemo treatments. I told myself I would do these about once a week but alas it just gets harder to find time and find words. With that in mind… Here goes.

About 3 weeks ago as Jack was getting ready for week 3, he presented to his fellow second graders.  The topic was about Neurofibromatosis, how the disorder impacts him and chemotherapy. With some help from his teacher Amanda Bausman (saint) and his Mom they came up with a 10 minute presentation, an accompanying quiz and prizes for the person who got the highest score on the quiz.  Of course, this was about Jack communicating to his classmates in an age-appropriate, educational way about what he is going to endure.  He laid to rest and addressed head-on how he may get sick, he may lose his hair, etc.  He assured them that he is not contagious.  He asked them for continued friendship and support.  His classmates were eager to say they would be happy to comply. Jack’s uncle, David Stordy made a trip to see him for the weekend and he was in attendance too.  Jack love Dave and I loved watching them interact.  Luke and Grace got plenty of Uncle Dave time too.  After the quiz and prizes and applause, it was off to chemo..again.

Halloween came and went and Jack enjoyed his favorite holiday by hosting a haunted house for his and Luke’s friends.  His Grandmother Mary Anne helps coordinate this event and it truly was spectacular.  Brenda and Kevin Miller joined in the.  Brenda watches and instructs Jack and Luke in an afternoon program and quickly has become a great part of our family.  AVERY special Halloween treat was having Grammy Burke and Aunt Peggy come down for a trick or treat visit!  A treat for Grammy Burke was the opening of a brand NEW Dunkin Donuts a mile from our house LOL…  Great to have them here with us to support Jack and spend time. Then it was off to week three.

While all this is going on, friends, family and neighbors who are continually sending us reminders of their concern are supporting us.  Additionally, every Friday someone is dropping off a meal! Coordinated by Jennifer Jones-Reeves, apparently neighbors and friends have signed up for months to do this for us.  After a long day at the hospital each Friday, this is a welcome treat that is full of concern and care…and delicious!

Last week, thanks to family, Beth and I went to the CTF Gala in NYC and actually had 2 nights outside the house!! It was wonderful to connect with other families impacted by NF.  It was great to meet doctors and fund raisers, etc.  Bailey Gribben, who is also battling NF, was a very deserving CTF Ambassador and we were glad to see him recognized.  His family has incredible strength.  Most importantly for Beth and I was that we got to spend time and party with Matt Benson, Carol O’Connell, Pat Kelly and Dan Allen.  Together with our team in Atlanta, these guys helped coordinate events this year that resulted in almost $180,000 in fundraising for CTF through CureNFwithJack.  On this night we discussed that a bit but for the most part we just had fun.  Never will be able to repay those guys.

Stewie RahRah!  Stewart Rahr is a philanthropic billionaire who we got to know through Matt Benson and Heather Hickox. His office is in Trump Tower in NYC and we went by to share our story and thank him for his $25,000 contribution to CureNFwithJack DC golf tournament.  Beth and I were amazed at the time he took, the genuine concern he had for Jack and the insightful questions he asked.  This is a man who can spend his time and money ANYWAY he wants.  He decided to give some of both to Jack.  He will be joining us in 2014 in Palm Beach at the 2nd annual tournament.  

Our friends the Dubuc’s held a weekend-long fundraiser yard sale for us and it was a spectacular success!  Uncle Mike O’Brien showed up along with Aunt KC to help see Jack through a few of his past treatments.

Jack is doing OK but starting to be impacted.  The issues he faces as someone with NF get exacerbated by chemo (weakness, lethargy, attention) and we are fearful of what lies ahead.  I say that because I will never lie to you.  This sucks.  It’s scary. And I hate it.  However, we will fight for him and with you all the way.  Thanks as always for reading, for caring, for asking, for checking in, for finding out more on your own and to those who choose to in February…thanks for running in the Cupid Undie run in your underwear!

Jake, Beth, Jack, Luke and Gracie