CureNFwithJack

Jack O’Brien Burke- An impactful 12 years with much more to do.

Every parent gets excited about a child’s birthday, right?  Three of my favorite days of any year are the birthdays of my kids.  Today is my first child’s birthday.  Jack O’Brien Burke made me a father and gave me a new perspective on life on January 24, 2005.  Despite being 37 years old and very excited…I was nervous.  My life was going to change forever! As it turned out, I had no idea.  Jack was born just after 11 PM that night and was a fairly “normal” delivery but of course, Beth did all the work.  I tried just to be “not stupid”, supportive and out of the way.  One of the greatest photos I ever took was the moment of his birth.  We did not know what are baby was going to be and we didn’t much care but they said “It’s a boy” and I smiled.   Beth held him and then they took him to the nursery and kicked me out so I could be lost wandering the halls with the most amazing feeling of joy, fear, love, anxiety, confusion, determination, imagination that I ever had.  

My mind race a million ways about a million things.  When I met him again just an hour later, I was equally amazed to see my boy.  MY BOY!  He had all his “stuff”.  Ten fingers and toes, two eyes, a mouth and a nose and he was mine.  Jack O’Brien Burke, it just doesn’t get better or more Irish than that.  He had a tough look to him and was a great baby. As his Dad, I was already hoping and imagining great things for him.  What I couldn’t have known was that he also had an incurable genetic disorder that would be discovered about 2 years later.

Reminiscing today about that night brings a smile to my face.  I was younger then and had NO idea.  I laugh now at the worrying I did about a cough or a sneeze or a crazy look I would get from my boy.  Little did I know what lay ahead for him. The boy was going to be impactful more than I could ever know.

Fast-forward to the birth of his brother, Luke who also was amazing and while we recently had found out that his older brother had Neurofibromatosis, he was spared a similar fate.  We didn’t know about NF before Beth became pregnant with Luke so we didn’t know what fate had in store for him.  Thankfully, he was not one of the 1:3,000 we have told you about.  We learned so much in those years between 2 and 6.  We held much of it close and not sharing much to anyone, in some cases not even family.  I sometimes regret that now, but I am firm in the belief that we said what we said and told what we told to others when it was right for us.  We learned about the myriad of things that could happen to our Jack.  Many of them to horrific to contemplate even now as many of them are still possible.  We learned well to advocate for him and ask questions of his many doctors and seek the best care for him.

When we decided that we needed to do more it was shortly after his surgery on his eye when he was just 6.  Surgery to reduce his neurofibroma needed to be done and we are forever grateful for Dr. Katowitz but it caused him so much pain that Beth and I wept for him with not much else to do.  He was resillient, and he was amazing.  He was MY BOY.

Over the next many years until today, Jack has made an incredible impact on his family, his community in Georgia, and the NF community and beyond.  He selflessly has given his story to others.  He has allowed us to share his triumphs and tragedies with the full knowledge (even at his young age) that his story and the associated awareness and fundraising activities would help him and many other people.  He has met thousands of people along the way and too many to list here. They have been famous and infamous, anonymous and well known, all generous with their time, talent and treasure for CureNFwithJack.  

He has met legends that are now friends, racecar drivers who are his caring buddies especially the incredible Ryan Eversley. He made Clint Eastwood’s day and I know because I saw it in his famously squint eyes!  He educated a room full of adults on how to be better team players against the worst of adversity.  When he was in 3rd grade he stood proudly in front of his classmates to teach them about NF and what he has to deal with reassuring them he would be OK and making them aware that their support for him and each other is not only needed but it is essential and should be who they are as people. I watched as he stood up in front of hundreds of people at just 5 years old and told a room full of other NF kids about NF.  Last year, minutes before he was to have brain surgery, I watched him put a fake arrow through his head so he would perhaps startle his surgeon and giggled at that fact.  He had no way of knowing his father, through his fake laugh, was dying inside at the though of what he was to endure.

I watched him for 52 weeks as an 8 year old go get his chemotherapy.  He engaged with his nurses and doctors and complied politely every damn week.  Same with the many, many MRI’s that make grown ups wince would just be routine for him. Without hesitation and with out SEDATION he would let them put him in that tube with the hope that we would get good news for his trouble.  Thankfully, we sometimes do.

I have watched strangers come up and ask him if he was “CureNFwithJack” and thank him for all he has done.  He was 9 when that happened the first time.  Impactful.

Many of you have traveled this road with him.  You have golfed; you have run in your underwear, attended a myriad of events to let him know he has impacted your life.  You do this for him and it means the world.  

We have had a pretty good run these last few months, dare I say.  That is what we are thankful for mostly is that he is OK right now.  No imminent surgeries, no new tumors, no chemo, maybe forever.  But this “sonofagun” NF has a way of making you complacent and we won’t be, ever.  We fight and 2017 won’t be any different and we still need you.  Jack needs you.  Stay with him folks.  I “have to” because I am his Dad.  You don’t.  But you choose to and it means the world to him and to us.  

I do know this.  I was filled with joy 12 years ago that I never could believe I could feel. These past 12 years have been an amazing journey with Jack.  One that has presented emotions I never thought I had and situations I thought I could never face.  But he, Jack O’Brien Burke has led the way.  He is a soldier in a battle for his life, educator of a community around him, advocate for others, and one nice person.  I don’t know what lies ahead, none of us do but if you told me 12 years ago that we would be battling NF and raise over ONE MILLION DOLLARS in SIX YEARS for research in his name I would have said you’re crazy.  Well, maybe we are crazy.   Impactful.  Here is hoping that within the next 12 years NF is in the past for Jack an others and all we would do is reflect on the impact he has made on all of us.  Thank you for your interest, your support, your advocacy and freindship.  Thank YOU for your impact, it is life changing.

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

PS  We are in our fourth year of supporting the Cupids Undie Run!  CureNFwithJack teams have raised over $600,000 in 3 years.  If you’d like to donate $12 or any amount to celebrate Jack and his birthday please go to:

https://my.cupids.org/JakeBurke

The Game Changer, Reggie Bibbs

My friend, Cathy Bilotta, shared a Facebook post this morning with an article from my hometown newspaper, The Boston Globe. Usually when I read the newspaper I scan the sports section and look through the articles pertinent in the news or business. Newspapers connect you to the world. They connect you to people. Your heroes and your villians are written about daily. For me it is usually those people that inhabit baseball parks, football fields or hockey rinks! Messrs. Brady, Ortiz, Bergeron, Orr, Nicklaus and others. Those guys are amazing at what they do. The terms hero or heroic are often attached to their names. I have often attached that monniker to them.

And then today. Today I saw my REAL hero in my hometown newspaper. Reggie W. Bibbs and I are acquaintances at best, Facebook friends for sure and have an unfortunate tie that binds us, Neurofibromatosis. Like my boy Jack, Reggie has NF. I am merely the father of someone that has NF, so I can’t fully understand Reggie’s battle.

I’ve met a lot of people through our NF journey, both in person and on line. I have read COUNTLESS stories, endured painful discussions with other parents and I have watched people die from NF. Our family has seen and experienced a lot of pain. Reggie, well Reggie is on a whole different level. Reggie has been a victim of unspeakable crimes against HIS humanity during his life. Reggie is 52 years old. Born in a time when little was known about NF and also born in a time when people were much more blatantly cruel to those who were perceived as different. But I don’t want to write about that mess. I want to write about Reggie’s humanity and how, in spite of years of terible treatment by others, despite enormous physical challenges, painful tumors that would knock most of us down, Reggie stands up!

Reggie, along with his good friend (and one of my other heroes) Lou Congelio started the “Just Ask” foundation to help people undertand him and OTHERS who battle Neurofibromatosis. What kind of man rises above the world around him that would treat him so cruelly? What kind of a man pushes aside his physical pain so that he can advance the cause for others who are in pain? What kind of man puts himself, his true self in front of the world day after day to help find a cure for a disorder? What kind of man is brave enough to embrace a world that is often not willing to be embraced? Lastly, what kind of man is laying his own life down in hopes that his efforts will cure your boy?

I can tell you what kind of man. A heroic man. A game changer. A hero. I invite you, no I implore you, to learn more about Reggie and his Just Ask foundation at http://justaskfoundation.org/

Read the article in today’s Globe here: http://www.bostonglobe.com/metro/2016/10/07/the-clothes-don-make-this-man/b9Ji1a6msBtpERXwbImdZM/story.html?event=event25

CureNFwithJack continues to try to do our part in finding a cure too!  In 9 days we will be hosting our 5th Annual CurenFwithJackDC Golf event.  You can still get a spot to play, donate or volunteer.  More info about the event can be found here:

http://curenfwithjack.com/golf/5th-annual-curenfwithjack-dc-golf-classic

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

Thanks,

Jake, Beth, Jack, Luke and Grace

September is Childhood Cancer Awareness Month. A Father’s Message.

My friend, Steve Paris’ daughter Mary Elizabeth died last year.  Cancer killed her.  12 years old. Can you imagine that pain?  I attended her service and was struck by a number of things.  I was amazed at the grace and dignity of the Paris family. In what is the worst time in their lives, they rose up and celebrated Mary Elizabeth and her impactful life.  Steve, who I did not know well at the time, was fatherhood personified.  He spoke about his cherished daughter, his amazingly strong wife and his other children with affection and bravery.  What most impressed me about Steve’s eulogy is that it was filled with emotion but not emotional.  It was purposeful.  It was educational.  It was impactful.  It made you laugh.  It made you cry.  It made you think.  And at least in my case, it made me better appreciate a lot of things.   So, for only the second time, this blog on CureNFwithJack is someone elses words.  Someone elses call to action.  Someone elses sorrow.  

I will gladly trade you a shorter amount of words if you would just WATCH as much of the video as you want.  I would only ask that you watch AT LEAST Steve’s part.  At the 22:30 mark he begins his eulogy and it runs until 45:45.  I PROMISE you that you will learn more than you knew before about love, parenting, faith, anger, family, hope, action and most of all that we have work still to do.  Pause it, rewind his words and listen again.  If you are not moved then I don’t know what to tell you. If you are, consider donating to Mary Elizabeth’s page in her honor for the month of September and Childhood Cancer Awareness Month.  $1, $2, $20, $100.  Whatever. Just click here

Jack and Mary did not know each other well.  The Burke and the Paris families, were not particularly close last year.  What we do share is an understanding.  As Steve says in his eulogy, if you have kids you were entered into a lottery.  You can’t put the ticket back if it is called.  You have to keep it.  It is my fervent hope that if your ticket has not been called, that it won’t be called.  If it has, seek support and help.  In honor of ME go ahead and donate and click here.  I will let one of the bravest men I know, take it from here.  Steve, you did your daughter proud.  Honor to know you.  

  CLICK ON THIS LINK TO WATCH THE VIDEO:   Again, watch it all or if you go to 22:30 Mark, Steve’s eulogy begins                   https://vimeo.com/138971608

Tough Question. Tougher Answer. Toughest Kid.

On Friday, Beth and I took Jack in for his MRI.  We have made that trip so many times with him.  A few days before the feeling starts to kick in. One I can’t describe, one you have to experience, and one I hope you never do.   The anticipation, the loss of control, the inability to change the path again for my boy all comes back.  I resent the familiarity of this process so much.  I wish it were not so familiar.  But it is and it shouldn’t be at all.  I hate that it is too familiar to this 11 year old or for any child really.  The one thing I can see as a “benefit” is that he now knows what to expect so it eliminates most of his fears.  He now knows the drill such that he dictates how the process will go to some extent.  “I like warm compresses on my hands please.  Helps the needle, you know.  May I please have the numbing cream too?  Use my left hand; I think the veins are better.  Don’t forget to flush the needle after please.  They forgot once during chemo and they had to re-access my port.  That sucked.”  I watch and observe this boy and for a moment and forget he is my son like I am watching some show on TV and I marvel at the kid who is giving orders.  I shake my head at how matter of fact he is, how POLITE and compliant he is with everyone.  And I am glad I know him in those moments.  For a very brief time, not too long, he is a character I am watching.  

And then it happens.  He reminds me why I am there.  He innocently and correctly pulls me back in so as to be sure we are riding together.  I got my few minutes, now snap out of it Dad. He is getting ready to go back in again.  Proud to tell people that even though he is a kid, he doesn’t need to be sedated. He can do it however they want him to do it.  He can and does endure.  The team leaves the room for a few minutes and then it is just Jack, Beth and I.  In the stillness of the room, we know why we are there.  We hate it but we muster up jokes and small talk and “usual” family conversation.  And then it happens.  He is not a baby anymore.  He has a question.

“Am I going to have to do this for the rest of my life?” I beg in my head for a minute to collect my thoughts, pretending I didn’t hear the question.  “What’s that, Beansie? What did you say?”asking the question I already knew the answer to. “Am I going to have to do this for the rest of my life?”

Boom. How do I answer that? Answer it factually as best I can without a hint of concern or worry and the whole time knowing that I have the same exact question and want the right answer too.  I told him I didn’t know.  Beth chimed in to help as she is always so great and explained that it was hard to know but that as he continues to be watched and there are no signs of tumor growth that the MRI’s will likely get less frequent.  “OK”, he said somewhat suspiciously.  “I hope they get less and less”.  I wrestled with the fact that I can’t give him the answer he wants and as I was about to add some meaningless afterthought, the team came into the room to take him.

New rules dictate that only one parent at a time can go in with him to the MRI room.  Stupid rules, by the way.  We decided that Beth would go this time.  About 90 minutes later, he returned alittle irritated and anxious to just get out. I hugged him and gave him a high five and started to help him get dressed.  He had his gown off and pants back on when the technician came in and announced that they had to take more pictures.  He looked at me with a What The F*ck look on his face, but always being respectful he said nothing and got back in the gown. I was angry for him.  It is such a pain in the neck and he thought he was home free having done his part.  But, alas he had to go back in.

About 20-30 minutes later he came back out and looked at me and said, “let’s go!”  I didn’t blame him.  So we left and returned home.  We should have results by Tuesday and we have no reason to believe that there will be anything but “stable” coming back.  Another battle fought and won in this war of his.  Another “Battle Bracelet” earned.

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

PS

Our next golf event is on September 16th, 2016 at the Lost Tree Club in North Palm Beach.  Click on the link for more info!  https://www.501auctions.com/curenfwithjackpb 

Bill and Lilly Ann

Other than my wife Beth, nobody has written here on this blog.  Until today.  Bill Brooks is a fellow NF Dad who has amazed me since the day I met him. He is passionate, compassionate, smart, funny and NO time for BS.  His daughter, Lilly Ann, has NF just like Jack but has had many challenges and has approached them with a grace and dignity that astounds me.  I have met her a few times and I can easily say she is one of my heroes.  He is too.  The rest of the words now are his about her and really, in some ways, about all NF parents and their children and “the battle”.  PLEASE, PLEASE READ.

Auction items! 5th Annual CureNFWithJack Golf Classic

Mike Eruzione SIgned Jersey, Captain of TEAM USA 1980 Gold Medal

Zac Brown SIGNED acoustic guitar!

Beautiful Home on Kiawah Island!

Rodney Harrison SIGNED jersey

Chipper Jones SIGNED Braves Jersey

Brian Urlacher SIGNED jersey

Dallas Cowboys 1995 TEAM SIGNED Ball

Dan Marino SIGNED football

Joey Lagano SIGNED Car Door and front end

BO Jackson SIGNED football

These are just a FEW of the items available at our LIVE and SILENT auction at the 5th Annual CureNFwithJack Golf tournament.  If you are going to be there than you can bid on any silent auction item and live auction item.  If you CANNOT be there with us and want to bid on a live auction item including what you see here please contact me, Jake Burke at jake@curenfwithjack.com and we can have someone serve as your proxy at the event.  YOU set your limit or maximum or you can be on the phone live with your proxy.  Please contact me before THIS Sunday at 5 PM if interested!

“I don’t need that. Just give me the mask and let’s do it”.

This week is a big week for Jack and the Burke family.  You may recall back in October of 2013 Jack started his chemo regimen.  Prior to that he had to have surgery to implant the chemo port in his chest.  Well, this Thursday after almost 27 months he is going to have it removed!  The doctors decided that he has had enough non-growth and stability in his brainstem glioma that the port can come out.  To tell you Jack is excited is an understatement.  I think the visible bump in his chest serves as an awful reminder of his condition and a rather terrible 52 weeks in his young life.  The photo at the top of this article is a clip taken from the film Jack’s Journey and to me represents the saddest part of the film his description of the port. As part of the process of surgery, Jack had to have a meeting with the medical team at Childrens Hospital this past week.  They did a brief exam, took his vitals and asked me some standard questions about his health. 

The nurse practioner was a very nice person name Elizabeth.  As I was rattling off answers to her questions, Jack was listening somewhat but essentially was bored with the whole thing. Toward the end of her questions she asked about his history and comfort/reaction to anethstesia.  She specifically started to ask me about how he reacted to a sedative called Versed.  She went on to explain a lot of people require it to relax them before surgery.  I started to answer that he hasn’t had it in a long while and that he does all of his MRI’s without sedation.  I continued and was then interrupted.  “Dad, I don’t need that”. I replied, “What?” He repeated,  “I don’t need that. Just give me the mask and let’s do it”.  The nurse practitioner looked at me and then to him and explained to him that it may help him relax, etc.  He very politely declined and said, “I’ll be relaxed.  I’ve had surgeries before. Tell her Dad.” 

We caught her up on his history of 3 surgeries, dozens of MRI’s and other procedures and she responded, “OK, no Versed for this brave, handsome guy.”  Jack smiled.  I swear to you he was channeling my father. He sounded like him.  His mannerisms were similar and shared his fearless, pragmatic attitude.  The nurse and I exchanged a knowing glance quickly.  She smiled and nodded her head.  I shook mine too.

So, on Thursday with no sedation he will be “put under” and they will remove this wonderful piece of technology that I am so grateful for and hate so much. His port.  We will move on past that and continue down the road to #ENDNF.  2 days later, CureNFwithJack Cupid Undie Run teams in Atlanta, Charleston, Charlotte, Chicago, Detroit, Kansas City, Saint Louis and Washington DC will run for Jack and others to help ENDNF.  Right now those 8 teams have raised a total of $80,000 and amassed 173 runners.  The following week we have 4 teams running in Austin, Boston, Philadelphia and Raleigh with 194 runners and $66,000 raised for a total so far of 367 runners and $145,000 so far.

We are so pleased to be joining in this Cupid Undie Run adventure inspired by Drew Leathers.  The memory of this great man and the impactful life he led with dignity, courage and humor.  I am personally honored by each of the 366 runners and their friends, family and donors who are making this event a success.  It is not too late to be a part of this phenomenon.  Simply go to this link and find a team or a runner and join or donate.  Onward.

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

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Goodbye 2015! Hello 2016?

Happy New Year from Jack and all of us here at CureNFwithJack.  I should start by saying thank you to all of you have donated their time, talent or treasure.  We are deeply grateful that so many of you have made Jack’s battle part of your life because I know you each have your own struggles.  We NEVER take for granted what you give us through the myriad of ways that you do.  For many, this day brings about an opportunity to reflect on the past year.  There is so much that has happened in the last 12 months it is hard to recall but I thought summarizing via each month would give you all a deeper perspective into what Jack’s Journey entailed in 2015.  There are a LOTS of links and photos.  Thanks

January- This month is always a mixed bag.  The joy of Jack’s birthday is what is most prevalent and the recovery from the holidays too.  What weighs heavy on our minds is what MAY or MAY NOT lie ahead.  In true form, NF threw some major curve balls that we could not see coming in the months ahead.  I marked this month with this blog post. 

February- Our second year of full participating in the Cupids Undie Run! CureNFwithJack has 13 teams across the country and we raised almost $200,000 in that one day. Boston team was the number one fundraising team in the country and our impact was huge.  We worked with the Cupids team to assist on securing Fenway Park which will continue again this year and introduced the Tundra Hat people as well.  In Boston, Lindsey Norse does a great job and Hannah Thompson crushes it in Atlanta.  This year we are looking to do even better.  This year has way more meaning because we lost our inspiration, Drew Leathers to this damn disorder.  Here are some pics: click here. 

March- This was a great month because CureNFwithJack was the beneficiary of the “Tradition”.  This is a golf tournament here in Atlanta on St. Patrick’s Day!  Our great friends Conleth O’Flynn and Dave McGlashlan hosted over 250 golfers and raised almost $20,000 for CureNFwithJack!  Again, photos from the event can be seen here. It was also one of our tougher months because we discovered that Jack’s glioma grew back slightly and that they discovered a syrinx on his spinal column.  We had no idea what lay ahead but I wrote about that day here. But we also experienced this!

April- On the heels of finding out what may lie ahead for Jack we went shopping at Kroger and gained some perspective. April also was when we announced some really, really BIG NEWS.  We announced our status as an official 501c3!  We became a tax-deductible organization and created our board of directors! We work closely with our doctors, advisors and the great team at the Childrens Tumor Foundation to bring the funds we raise to help in much needed research. Our great friends Carol O’Connell and Matt Benson and the Washington DC CNFWJ team hosted a fundraiser in hopes of creating more awareness for NF as well as getting folks interested in their golf tournament! It was a tremendous success. Some pics here.

May- We were busy preparing for the 4th Annual CureNFwithJack Atlanta Golf Classic.  It takes quite a team to pull all of that off and we are lucky to have a great one.  School finished up and we took a few days with the kids to visit our friends the Bittings in Charleston and some beach time.  The Milton, GA fire and police departments also held a fundraiser for CureNFwithJack which was really neat.  Having our local first responders with us was really great especially since Jack has several police and fire professionals in his family most especially his Grampy Burke.

June- The event that “started it all”.  The Atlanta tournament was great this year.  We had a new venue and lots of new faces that joined in the fun and helped us raise over $70,000.  A lot of people returned for their 4th 3rd or second time and have told us it is the best run event they attend.  We were happy to welcome Super Bowl champion Rodney Harrison to the event (he won) and our friend Zac Brown donated a guitar for our raffle!  It was quite an exciting day for all of us and marked the 9th CNFWJ golf event!  Some great photos here.  We also got some great corporate support from our friends at Converse and Coca Cola and hope to be able to offer these products soon!  Check these out by clicking here.

July- This was a great month for us from a fundraising and awareness perspective.  The Pattillo family hosted the 4th annual CureNFwithJack yard sale and it was the biggest success yet!  We had more families donate and participate than ever and raised several THOUSAND dollars! We had fun, here are some pics here!  Our neighbors the McCreanors also organized a fundraiser for Jack at the local swim meets too!  On the awareness front, CureNFwithJack was a featured story in the UMass Lowell alumni magazine with a readership of over 50,000 people. Ed Brennen did an incredible job of describing Jack’s journey and how community and cooperation has been so helpful.  You can read the article if you have not already done so by clicking here.

August– A very bad month.  We lost a friend, hero, warrior and great person in Drew Leathers to the ravages of NF.  Drew was/is the inspiration behind so many things to help find a cure for NF.  The Cupid Undie Run is perhaps the most well known.  How do we tell Jack and Luke?  We struggled for a few days with that one for sure.  We finally shared the horrible news with them at our dinner table.  They were both hurt deeply.  Jack did not say much at first and then finally asked if his family was OK.  We said we did not know.  Luke asked if Drew and Jack had the “same kind” of NF?  We told him no and that Drew had a different form.  We then talked about the impact that Drew had on our family and the NF community as a whole and that his spirit will be with us and a driving force behind CureNFwithJack forever.  Jack said, “We just have to do more”. I wrote about it here.

September– This month found us going back for an MRI to see the progress of Jack’s syrinx. The news was not great and i wrote about it here.  It was progressing and surgery while not imminent would be necessary.  We had hoped we could wait until Thanksgiving break for surgery…just a little while.  The doctor was willing to give that a shot.  We left the hospital and the next day Jack was invited to speak at his first corporate event about his journey.  He spoke to an international audience of sales and engineering professionals about facing adversity and creating a great story.  Kevin Andrews is a friend from my days at UMass Lowell and he invited Jack to speak.  He got a standing ovation, some incredibly generous donations and more soldiers signed up for his battle!  A few pictures can be seen by clicking here.

October– October was the craziest of all of 2015 and I wrote about it here. We were met with incredible sadness by the loss of our neighbor Mary Elizabeth Paris from AML.  Mary was 11 and fought along side her family for a long time to beat back cancer.  It is just awful.  The second annual Oktoberwurst tournament took place here in Georgia to raise money for CurenFwithJack.  A tournament with a Bavarian theme is just what we needed to help bring some smiles to our faces.  Shortly after that event we learned that NF can run a course any way it wants and the doctors told us that based on Jack’s symptoms that we should have brain surgery ASAP.  So, we scheduled surgery on October 17th.  The 4th annual CureNFwithJack DC Classic was being held that day and this would mark the first time that Jack would not be in attendance at a golf tournament.  He was very sad.  We were all very angry to not see and thank all of our supporters.  The evening before the surgery, Jack made this video describing to Luke what was going to happen. View it by clicking here.  Jack had his surgery and it was a very long morning.  He was in intense pain and it is the hardest thing as a parent to watch your child in pain and not be able to take it away.  As he struggled mightily at the hospital, many of his friends, neighbors and family were working hard on preparing a “Halloween themed” room in our house to welcome him home.   Meanwhile in DC, the golf tournament raised almost $60,000 for NF research thanks to the team led by Matt Benson and Carol O’Connell!  After four days in the hospital, Jack came home to recover.

On the 24th of October the first annual SmashNFwithJack Tennis tournament was held.  Led by Christine Langlands, this event allowed CureNFwithJack to reach more people and raise more money for NF research.  Christine secured sponsors, players, created raffle baskets that were amazing and we had a wine tasting and sale!  All proceeds went to CureNFwithJack!  Here are some great photos.

A few days later, Jack ventured out for the first time since his surgery.  As it so happens, Clint Eastwood was filming a movie in our neighborhood and after some conversations and generosity of the crew we got to meet a living legend!  Jack has aspired to be a film director and he was thrilled to meet Clint.  Luke thought it was great too! Look here! Halloween arrived and it was touch and go on whether Jack could participate.  Through the kindness of our neighbors and friends, it was arranged to have a golf cart available to drive him from house to house.  What amazing support he receives from our neighborhood.

November– This month was spent on continued recovery and trying to get “back to normal”. We took the boys to their first concert ever and it was Kevin Griffin, lead singer of Better Than Ezra and a supporter of CureNFwithJack. Before the show we had dinner at the venue.  At some point, Jack excused himself to go to the bathroom while the rest of us conversed at the table.  About 5 minutes later Jack returns to us accompanied by Kevin!  Apparently Kevin had recognized Jack and he sat with us for a few moments, took a few requests and went to prepare for his show.  Post show we got some great photos of the night that you can see here.  

Our neighbor Kelli Taylor helped bring awareness to CNFWJ through a custom jewelry sale for the entire month of November and raised several hundred dollars!  The women of the Indian River State College basketball team asked to have Jack as their mascot and season inspiration for the 2015-2016 season, which was just terrific.  Here is a great photo.  Jack continued to recover and returned to school and things continued to trend nicely through Thanksgiving.

December– December was finally here and we prepared for Christmas and New Years.   Near the beginning of the month we were asked by the University of Georgia Hockey team to come out to a game and have Jack drop the puck and Luke skate with the team at warm-ups as part of “CureNFwithJack night”. Coach Chris Copelli and a teacher at Jack’s School Michelle Patel coordinated this! It was a great evening with lots of tears and smiles and a nice way to begin the end of a very tumultuous 2015.  Check these out here.

Last week just after the ball dropped I took Jack aside away from the others at a party we were attending.  I hugged him extra hard and said thanks for being such a brave boy and inspiration.  “Thanks, Dad” was his response.  I asked him what he wanted for 2016 the most and he said “No more surgeries and no more chemo Daddy”.  “Can I go back to the party now?”  I said “Yes”.  I took a moment and a breath and joined back in with the crowd.  

I don’t know what 2016 will bring…none of us do.  Today, on January 4th we have the follow up MRI since his surgery and from there our 2016 will be based.  I hope each of you continue to stay with us this year whether on Facebook or attending an event or writing an encouraging note to Jack.  We need that.  He needs that.  Thanks.

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

The Good, the Bad and the Ugly

Sorry for the delay on this update about Jack.  There is a lot to share.  Let me first explain the title of this blog.  As the attached photo shows, we had the opportunity to meet Clint Eastwood when he was in our neighborhood filming his latest movie. What a wonderful person.  85 years old and after a 10 hour day of filming he could not have been more gracious with his time.  He talked with the boys, signed autographs and told Jack that he would “wear my CureNFwithJack shirt with pride.”  It was a very neat experience and it was the first day Jack was outside post surgery.

Of course, Clint Eastwood is an American icon.  He has about 65 films in his filmography and is an incredible talent.  As I was standing with him and watch him interact with Jack and Luke I thought about how great the moment was and that I was standing and speaking to “Dirty Harry”, “Outlaw Josey Wales” and “Walt Kowalski”.  And then I thought of his character “Blondie” from the movie “The Good, the Bad and the Ugly”. Funny, right there it hit me.  That movie and our struggle with NF, there is not a better description.  As I watched Jack talk with Clint, I could see he was still weak from surgery and fighting his pain to meet “a real live director”. Despite the pain and the stitches, Jack hung in there tough rebuking my earlier requests to leave.

While we have had all 3 elements of NF, our path has had a lot of “Good”.  We have raised over $1M for NF research so far.  We have created CureNFwithJack to raise dollars and awareness toward a cure too.  We have experienced immeasurable generosity from friends and strangers alike.  We have seen a community, a nation of people really, rally behind Jack.  We have broken fundraising records by having HUNDREDS of people run in their underwear in the COLD for Jack. We have met amazing people famous and otherwise.  We have been on TV and radio to spread the word about NF and continue to be hopeful for a cure!  Jack came home from the hospital to a fully decorated guest room with his favorite Halloween themes and posters created by friends and neighbors and their kids.  No doubt that this “Good” helped him heal quicker!

NF is “Bad”.  Like many families that deal with NF, we have had our challenges too. You all know most of it.  52 weeks of chemo.  Jack has endured surgery to reduce a plexiform neurofibroma in his left eye orbit at age 6. He had brain surgery at just 10 years old.  The pain from this most recent surgery was described as this:  “Imagine your worst muscle cramp.  Multiply it by 100 and then layer a broken bone over that.”  We have had countless MRI’s and scans. There are so many NF families that have dealt with this and MORE.  We need to fight to help all of them.  We need to continue to do the “Good” and eliminate the “Bad”.  

NF is ugly.  What the disorder can and does do to people is just ugly.  It is relentless.  It does not care if you are 4 years old.  It does not care if you are a father or mother or aunt or uncle.  It will try to hurt you and in some cases, try to kill you.  Sometimes it does and that is ugly. Sometimes people are mean and don’t understand the disorder and people act ugly.  They say or do things that are ugly.  The disorder can impact even those who don’t have it themselves. We have to stop it soon.

We will win.  The Good will triumph, just like in the Clint’s movie.  Jack’s surgery was successful (we hope) and we will know more in a few weeks.  His pain is essentially gone from the surgery and he started back to school full time today. His friends, classmates and teachers are all so welcoming and anxious to see him return and will do their best to support his transition back.  It’s Good.  He will get caught up soon.  He will recover and while we take some relief in that we know that we must continue to be vigilant.  We will always embrace the Good that is the majority of our experience thanks to people like you but we would be foolish not to recognize that it can change in a moment.  Not just for Jack but also for other NF patient and their families.  So keep doing what you do.  Say hi on FB or on this website.  Go to a tennis or golf tournament.  Attend a wine tasting.  Run in your underwear in February on one of 13 CureNFwithJack teams! Send prayers and good thoughts.  Eliminate the Bad and the Ugly.  

Stay with Jack. 

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