If love were the currency for a cure

Welcome to 2014 and the latest update on Jack’s fight.  Lots to share.  And the usual rules apply:  the good and the not so good included.  We have been extremely blessed by the generosity of friends, family and strangers alike particularly since Jack’s glioma diagnosis and certainly during the holidays.  We have received care packages from the McLaughlin’s, Gordon’s, Fagan’s, Palbicke’s, Davis’ and others.  All have been received and have served as a particularly great distraction on chemo days and those tough days after.  There are a lot of “things” in those packages but most importantly there is tremendous love.  If love were the currency for a cure than we would have one!

I wanted to share with you a few stories about children that are helping us fight our battle.  My college friend, Laura Daniluk McGaffigan, is a mom of 2 young boys who are great hockey players from Boston. Together with other families and teammates, they spent the MONTH of November raising money and awareness about NF by shooting over 1000 hockey pucks.  These boys have never met Jack. They don’t know him or anyone with NF, but they and their families spent countless hours to help.  They raised over $3,200 collected from many families that are now part of the fight!  The McGaffigan boys also sent Jack and Luke their Boston Stars hockey jerseys!  They even sent Grace some items too! The attached photo to this article says it all!  If love were the currency…

HUGE supporter of Jack, Joanne Rizzotto-McKay sent us a hardcover bound book over Christmas.  It was a 50-page story custom written and illustrated by her 3rd grade class in Medford, MA.  The story was about Jack, Luke and Grace and Santa Claus.  They included specifics about our kids, their favorite things and it was truly amazing.  These 9-10 year olds did all the drawings and it was quite an effort that brought us all many smiles.  If love were the currency…

Our friend Allison Maffei and her kids and their friends none of whom have met Jack, spent the day selling cookies and lemonade to help raise money and awareness.  Again, these kids sent cards and hopes for a cure for Jack and wanted to meet him one day.  If love was the currency…

Luke’s friend Hudson Onians just had his 7th birthday party this past Saturday.  In lieu of receiving gifts from his friends and their families, he asked that people make donations to CureNFwithJack!  That’s right, he is SEVEN.  And yes, he is Luke’s friend, not Jack’s. He wanted to contribute.  If love were the currency…

Yesterday, we received a donation from Emma Flynn.  She is our neighbor who has helped with previous events to raise money and awareness.  She put on her Christmas list to Santa that she would like a donation to CNFWJ so that we can get a cure.  If love were the currency…

This past week our friend Jennifer Barr’s daughter Olivia wanted to help raise money and awareness as part of her Confirmation project.  She is making and selling meringue cookies.  They are custom made blue and green to reflect the NF and CNFWJ colors.  In 2 days she had SIXTY orders of cookies and a whole bunch of folks who now know about NF!  She is making a difference.  She is 9.  If love were the currency…

This last story is not about a kid, but a good friend of mine.  Dan Ryan has been a friend and colleague for years.  We are not best friends.  In fact, we rarely get to see one another.  We disagree on many things and love to rib each other on a myriad of topics.  Dan has not met Jack.  But, Dan knows Jack.  Dan is a Dad.  Dan hates NF.  When we first got the news on the glioma, Dan sent a Chili’s gift card.  Around Thanksgiving he sent a get well card signed by Chicago Blackhawks player, Patrick Kane.  Last week he managed to get and send a SIGNED Patrick Kane hockey jersey!  We timed it so we could give it to Jack during his latest chemo/oncology/mri/gameplan meeting.  The attached photo says it all.  If love were the currency…

Which brings me to the situation we now face.  The MRI showed no shrinkage in the tumor.  While you can imagine our disappointment, we were not totally surprised based on expectations that were laid out for us, but we had hoped for some change.  Bad news.  There was no growth either.  There were no other detectable tumors. Good news.  In consultation with his doctor, we are trying a new medicine and regimen. Good news: apparently it will minimize some of his side effects and hopefully shrink/eliminate the tumor.  Bad news:  His regimen WAS going to be 52 weeks with 4 weeks on 2 weeks off with the other medicines.  It is now 52 weeks, no breaks.  

So, if love were the currency for a cure for NF then we would have one.  But, alas, it is not.  Scientific research (funded by private companies, philanthropists and individuals like you) that supports passionate, brilliant, dedicated and scientists, physicians will bring the cure. It’s what we all want.  It’s what we need.  Don’t EVER kid yourself that we can survive without the love, because we can’t.  It is and has been a major part of what keeps us going.  Remember that. Remember what you have done, what you are going to do and that when the cure comes you can say that you were part of a world changing event.  Think about that.  

Many of you know what I mean when I say F NF!  It has caught on a little bit and the “F” may be offensive to some.  Well, for those who don’t like THAT “F” word, substitute it for FUND.  Now, let’s go F NF! together in 2014.  

With deepest thanks, we remain grateful and hopeful,

Jake, Beth, Jack, Luke and Grace