How do you eat the elephant? One bite at a time….

It has been a few weeks since my last update.  Apparently people are reading the updates because I have been asked when the next one was coming.  Hard to find the words sometimes, so sorry for the delay.  As I write this, Jack has completed two of the FIFTY TWO chemo sessions.  The Carboplatin and Vincristine regimen he is on has caused him some jaw pain that makes him not want to eat.  It was determined that it was likely the Vincristine and that for the second treatment they did not give him any.  He has not complained of that pain so far, so we may be changing the plan going forward and reduce or eliminate the “V”.   No way around this folks..it sucks.  But we persevere.  Ryan Eversley stopped by for Jack’s first infusion and stayed with him the entire time which Jack loved. He played on his phone with Jack and made a bunch of Vine videos and provided support and needed distraction.  He is a great friend to us all.  Jack’s Grandmother, Mary Anne O’Brien has been immeasurable in her love and support.  She has attended both infusions and offers great perspective and guidance as a professional nurse, cancer survivor and loving grandmother.  Essentially, she is “the bomb”.  

OTHER UPDATES:

We had a haunted house this past weekend that was a great success.  Many of Jack and Luke’s friends and their families stopped by for some fun.  The boys really had fun scaring people with their cousins.  It was a nice distraction for all of us and really a great time.  Ken Rada is a local professional photographer who photographed our wedding.  He called and asked if he could come by and “shoot” the Haunted House.  Many of you know Ken has volunteered and has photographed both golf tournaments and has donated prizes for our auctions.  He has been a great friend and supporter who is absolutely brilliant.  Check out the photos here:  https://www.dropbox.com/sh/ebwa0v73tqfgthh/ssoHNCaVCB#/

Our great friend and neighbor, Jeannine Jannot started a facebook page for people locally who want to lend some type of support.  We are very fortunate to have so many local friends and neighbors who want to “do something”.  The challenge is figuring out what we really “need” and organizing all of that in a way that works for all.  The page is https://www.facebook.com/groups/339950336150898/  This has been great and thanks.

Maha Mamdouh Mostafa El-Sayed is a Mom, friend, neighbor and dentist.  She has asked to help by providing her expertise and love for Jack by maintaining and monitoring his oral and mouth health while he endures chemo.  Time, Talent and Treasure indeed.

Beth and I are planning to attend the annual Children’s Tumor Foundation Gala in NYC next month. We are pleased that our friends Dan Allen, Patrick Kelly, Matt Benson and Carol O’Connelll will be joining us.  They all worked very hard this year hosting TWO golf tournaments for Jack and others with NF.  It will be nice to just relax and enjoy their company and thank them for all they did in 2013 for CureNFwithJack.

Brad Leathers who is also an NF DAD has been donating and creating our custom CureNFwithJack golf hats that are a tremendous marketing and awareness.  I have had many requests from people who want to purchase a hat or t-shirt and he has agreed to help us create and manage our “store” so stay tuned for that.

Last weekend, in addition to our haunted house friends in New Hampshire and Massachusetts were supporting Jack.  Our great friends, teh Dubuc’s had a multi-day, multi-family yard sale to raise money.  Sandy and John Dubuc along with their kids and family worked hard over two days so that more people would learn about NF!  At the exact same time, Diane Amirault, Joanne McKay, Nancy Murphy and Sarah Ahern walked for NF in Wakefield, MA and met up with Hank Morse who was emceeing.  These wonderful people have been friends since high school and college and have been there for us for a long time.  Awesome.

CUPID”S UNDIE RUN

Perhaps the largest growing fundraiser in the COUNTRY much less for CTF.  Beth and I participated last year.  In one day, simply from people running 1 mile in their underwear in 17 cities they raised $1.3M for NF research!  In 2014 they have expanded to include Boston and Chicago and several other cities.  In lieu of an official CNFWJ event in my hometown and Beth’s hometown we decided to ask people to create teams in these cities and others to raise $ and awareness.  My goal is to have the largest group of underwear clad runners in the country.  In Boston, we already have 40 people signed up to run!  In DC, Austin, Chicago and Atlanta there are CNFWJ teams already in place.  Here is the link to the Boston team page

http://hopecur.com/cur/teampage.asp?fundid=9064  You will find lots of info about the event here, but to summarize  1 mile of running, 4 hours of drinking!  My kind of race 🙂

FUNDRAISING 2013

Lastly, I wanted to talk about this.  When we started to try to make a difference by raising awareness and $ we hoped to raise $20 K per year and that MAYBE by the time Jack graduated high school we could raise $1M in his name.  I attached a screen shot from CTF page today.  I want you all to look at that number.  I want you to know that YOU are part of that number.  I want you to know that we are so pleased and happy that Jack’s story has benefited and will continue to benefit so many other families impacted by NF.  Whether you wrote a check, played golf, wrote a note, sent an email, “liked” a picture or comment, made a call, sent a prayer, ran a race YOU make a difference.  To date after just about 3 years, CureNFwithJack has raised a tremendous amount of awareness and almost $250,000!  As the attached photo shows, in 2013 so far alone we have raised over $172,000!  Amazing.  Powerful. Impactful.  Jack really loves knowing that he is making a difference. It empowers him.  

As his struggle intensifies, as he gets sick before he gets better, he will need you. As his appetite and all of our appetites for that matter get disrupted he will need your help to eat that elephant, one bite at a time.  THANK YOU ALL.

Jake, Beth, Jack, Luke and Gracie