I got caught…

My last update was just a week or so ago.  I have received a lot of feedback about the update and noted that many people had said I didn’t focus on too much about Jack’s course of treatment, etc.  Instead I focused on a lot of the GOOD that has transpired from people responding to Jack and his challenge.  The news articles, the money raised in his name ($400,000 in 2013-2014), the upcoming “Front Row” trip and of course the 3rd Annual CureNFwithJack Golf Classic on May 5th.  

But I got caught.  I got caught and almost lost sight on what the hell we are doing here.  What the hell HE is doing here.  He is fighting for his life.  I don’t think I have forgotten that fact one single day in 7 years but man does NF have a way of reminding you what a life sucking MONSTER it can be to a family.

I hate Chemo Friday or Thursday.  I hate it because of what it reminds me of every week.  I hate it because it pulls Jack from school.  I hate it because his brother is starting to really understand what’s going on and it is bothering him.  I love it because it may help cure Jack.  I love it because it may save Jack. I love it because every week a couple hundred people show up at his school (whether he is there or not) wearing their CureNFwithJack shirts to tell Jack (and us) he is not alone.  I hate it because it can make him sick.  I hate it because I don’t know if it is working.  I love it because it shows me how strong my boy is and that his Grampy would be so proud to know his “Little Buckaroo” is a fighter like he was. I love it because it brings so many people/worlds together.  

Ultimately I hate when his counts are too low to get the chemo I hate/love so much.  It means he is not well.  He powers through but you can’t fool science even when you fool the entire world including your Daddy. So, no chemo to make you sick to make you better because you are too sick.  How crazy is that?  Hoping your son gets chemo that will make him sick to make him better?  This is not a unique struggle, millions of people go through it daily but I am here to tell you it sucks

So we press forward another week. Party tonight to raise money for Jack’s school.  Football for Lukey on Sunday. New words from Grace.  Then school on Monday and we wait.  

I will NEVER not enjoy the fruits of the good that all of you provide through your time, talent or treasure.  I will NEVER say no to an opportunity to raise money for research and for Jack.  I will NEVER say no to an opportunity to tell the NF story on TV or in a magazine or newspaper. I will NEVER stop having a blast at golf tournaments, lemonade stands, or yard sales.  I will NEVER tire of the stories of young people passing up birthday gifts and instead sending money to help find a cure.  I will NEVER give up the fight and be happy with $400,000 (we need a BILLION DOLLARS…really, a BILLION to cure this f’n thing). 

But, I will NEVER get caught again.

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

Thanks,

Jake, Beth, Jack, Luke and Grace