CureNFwithJack

Battle Bracelets

About 2-3 weeks into Jack’s treatment we were driving home and he asked me to “get rid” of his white hospital bracelet.  When we got home he ran to the kitchen and got the scissors for me to cut it off.  “I hate these things Dad”.  I didn’t have to ask why.  I knew.  First, it reminded him that he is sick and needs chemotherapy. Secondly, they are irritating.  After I cut it off I threw it in the trash and went to my office and cried alone for a few seconds.  I did that a lot during his treatments.  I regained my composure and sat with my thoughts for a few minutes.  Then I got up and went back to the kitchen trashcan and retrieved his bracelet.  I squeezed it hard in my hand perhaps hopeful it would disappear along with the rest of our reality. I walked back to my desk and looked at it and saw all the identifiers I did not want to see.  MY son’s name JACK O’BRIEN BURKE.  It had his birth date. It is how the hospital identified him.  “It was not his identity”, I thought out loudly to myself and I was not going to let it be his identity.  My office has a little trash can and I leaned over to discard the bracelet again and I stopped. Instead, I put it in the top drawer of my desk.  It was my reminder that this is the battle we were fighting.  It is HIS battle and he has the bracelet to prove it.  We were just fighting along side him.  The next week came and again, so did a bracelet.  I kept that one too. Week after week, bracelet after bracelet, battle after battle I just kept collecting and keeping these mementos of his battle.  

With tremendous respect to my friends and family in the military I came to think of these bracelets as his battle medals.  They became proof of the enormity of his fight.  A tactile reminder of what he has endured much like military medals recognize a soldier’s battle experience. This analogy is not to minimize the real-war experiences of military personnel nor does it serve to overstate Jack’s experience so I hope it is not taken that way.  It occurred to me that they and Jack were in fights for their lives and the medal/bracelet reminds all of that fact. The thing is though; Jack does not get to “leave” the battlefield.  NF does not allow him to leave.  He is fighting every day. Little battles.  Big battles. Everyday. Fortunately, Jack has his platoon of brothers/sisters in arms.  He has you and all those that you have asked to join his fight… We are going to keep fighting and are happy to have you with him.

A few weeks back Jack stopped receiving chemotherapy.  2 weeks after that he got an MRI to determine if the tumor on his brainstem had shrunk.  The anxiety during that time was excruciating and palpable.  We were fortunate that we got “good news” which I shared via social media and email.  I also indicated at the time that it was a complex situation and I would explain more “later”.  Well, later is now.  Jack still has a brain tumor. Period.  He is not cured.  Jack still has a plexiform neurofibroma in his left orbital area.  He is not cured. Jack still has Neurofibromatosis Type 1.  He is not cured.  He has been treated, not cured.  

Make no mistake about it; we were pleased and relieved when we got the news that his brain tumor “shrunk”. It decreased after 48 weeks of chemo by 10mmx 20mm.  That doesn’t sound like much but I can tell you that if it GREW by that much I would have been devastated. As his Dad, I was hoping for more.  I was hoping for a lot more.  But NF makes those calls, not me.  I can’t control that process. Science and “current available treatments” control that process.  

We are grateful for the progress in treating NF but we are far from satisfied. Our boy isn’t cured.  What’s worse the pathology of the disorder is such that we have NO IDEA what lies ahead.  So we need to continue to fight the battle.   We will continue to leverage our successes. 2015 will have us finding new ways to raise awareness and dollars as well.  It’s not over.  We look ahead.  But we don’t forget our past.

Tomorrow there is HOPE and you are among the reasons why.  Don’t ever forget that fact. EVER

Happy Thanksgiving!

Jake, Beth, Jack. Luke and Grace Burke

A Hero meets a Legend on a roller coaster

There is so much to write about and share with you.  First and most importantly is that Jack is no longer receiving chemotherapy treatments.  He has endured 48 weeks of this treatment and we are now glad it is over.  On the very last week he came down with awful, debilitating mouth sores and perhaps the last 2 weeks were the worst of the entire process.  So there is joy in that he has completed his chemo but anxiety with the impending MRI next week to see what effect chemotherapy had on shrinking his brainstem glioma.  I will write more about this later but we always, ALWAYS wonder if there are others ahead because that is part of the beast of Neurofibromatosis. Joy at good scans, relief, anxiety, fear…part of the rollercoaster ride.

Once again we had our annual golf tournament in Palm Beach Florida last week! As the attached photos show (and the title of the blog indicates) we had a very special guest at our tourney. Jack Nicklaus and Mrs. Barbara Nicklaus stopped by to say hello and offer their support to Jack.  When we first started to plan our golf tournaments 3 plus years ago here in Atlanta I always thought that if we could partner with a “golf pro” involved it would bring such validation to NF and CureNFwithJack.  Of course because of his stature, philanthropy and his name, Jack Nicklaus was always the ultimate person we would like to meet.  As life and luck have it, his son Mike played in our first ATL tourney.  He is a good friend with Dan Allen and they were inspired to host their own tournament in Florida.  Before we knew it last year we had the support of the Nicklaus’ and Mr. Nicklaus even signed our custom flags.  Alas, due to his schedule he could not attend last year.  This year was different.  Just a few days after Jack’s chemo was over we traveled to the tourney and the next day we meet Jack Nicklaus!  Amazing! 

Mr. Nicklaus was gracious.  He was welcoming and was only matched by my “favorite Nicklaus”, Barbara. It was quite apparent that both love children and their life work for children’s health issues indicate that as well.  Barbara asked little Jack to “autograph” her CureNFwithJack hat and he quickly obliged for her and for Mr. Nicklaus.  Mr. Nicklaus took photos, shook hands and signed a few autographs for our guests and that helped make it a great day.  I have to say, I was overcome a bit with emotion seeing Jack and Luke with Jack Nicklaus.  It really was a dream come true.  We are doing something good here.

Ryan Berube played.  He won the GOLD medal in Atlanta in 1996 and he was kind enough to bring it along so Jack could wear it.  He too was kind with his time and said he looks forward to next year!

At the top of the list once again, is Michelle McGann.  She has been such an advocate and friend to all of us and despite a very hectic schedule she flew home that morning to play in the tournament.  She fills a room with her infectious personality and was giving some instructions on the putting green to our friends and neighbors, the Toeppner’s!  

Our friends from Atlanta, Jack Flynn, Jeff and Jen Toeppner (and kids), Jack Frank and his brother Greg Frank traveled to be with us!  Amazing.  My friend Patrick Boyle from Massachusetts brought two friends with him to play.  Perhaps the coolest part of the day was the putting contest.  About 60 people attempted to make a 30-foot putt for a prize of a custom-made $400 putter.  After about 20 people, Taylor White hit it!  Another 30 or so players took a shot and missed.  Then Luke, Jack’s brother stepped up.  And drained it!  It was awesome and the crowd went crazy.  We had a “putt-off” and Luke won the putter.  It was so great for him.  He is so kind to his brother and never complains about not being in the limelight.  I loved that he got a piece of recognition.

A memorable day indeed thanks to the hard work of a lot of people and volunteers.  Dan Allen, Mike Nicklaus and Pat Kelly pulled it off again.  All of our volunteers and most importantly, our players made it memorable.  We continue the fight to CureNFwithJack.  We continue to raise awareness and dollars to realize that goal.  

It is a roller coaster ride.  There are thrilling moments.  There are scary moments. There are smiles.  There are tears.  Here is the thing.  We have to stay on the ride. We can’t get off.  So we manage the tough parts and embrace the joyful and thrilling parts.  You know, YOU can get off. YOU don’t have to ride, but YOU do.  All of YOU.  I think riding a roller coaster alone, even for the bravest amongst us, is a lot scarier than riding with a whole bunch of full carts of people.  YOU have got on this ride with us and YOU ride and ride.  Your hands are up and YOU are smiling on the joyful parts and your teeth are clenching at the tough parts. At the real scary parts, maybe YOU even say a prayer or two.  

I will be honest I don’t like roller coasters.  I want to get off. I want you to get off too.  Someday we will.  Neurofibromatosis WILL be cured. Neurofibromatosis WILL have effective treatments and we will get off this ride.  Until then, thanks for being with us, for that reassuring nod and wink as the safety bar comes down to lock us in.  The look that tells me YOU are with us for the ride.

Lastly,

Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that. EVER.

Jake, Beth, Jack, Luke and Grace

 PS

Follow Jack on Twitter @curenfwithjack or on Facebook at https://www.facebook.com/CureNFwithJack

CureNFwithJack on The Golf Exchange presented by the Honda Classic.

On Sunday, I was invited to talk about the CureNFwithJack Tournament in West Palm Beach.  The hosts Russ Evans and Craig Dolch were so great and did a terrific job with the interview and getting the message across.  I tried my best to inform folks and not sound too foolish!  Click on the link below to take a listen and if you want to sign up you can do so at this link:  http://curenfwithjack.com/content/west-palm-beach-2014

Thanks

CureNFwithJack and Pandora’s Box

It has been a while since our last update and lots has happened. So many people continue to keep Jack in their thoughts and actions. We had a record breaking Yard Sale in July, Allison Maffei and her children did a coffee and donut fundraiser which educated about 100 NEW people about NF while raising over $1,000.00. The Budds Family. The Moss Family. The Flynn Family and their daughter Emma. Instead of birthday presents, she asked for donations for CNFWJ. 11 years old. Our 2nd Annual CureNfwithJack Palm Beach Golf Tournament is coming up on September 26th. You can register to play or sponsor by clicking here. It’s going to sell out so do so soon. Our Jack may not be the only golfer named Jack in attendance, if you catch my drift. Our 3rd Annual DC Tourney is October 17th! All very exciting things. We are “moving the needle” along toward a cure. All of these activities and events continue to give us HOPE. HOPE during a time when we can’t see beyond the next chemo session. HOPE when we have to suddenly admit Jack into the hospital for a 2 night stay because he got sepsis. HOPE as we roll into week FORTY-FOUR and within reach of week 52. HOPE that the MRI will bear good results.

I was reminded recently of the story about Pandora’s box. She was gifted the box by Zeus and was told to never open it. Well, she did. And she let out to the world all of the evil and bad things we experience. Death, poverty, destruction, murder, disease, greed, all of it. All released to the world to provide humankind with all sorts of misery. As the story goes, Pandora apparently (eventually) closed the box before it was entirely empty. The only thing left in the box was HOPE.

In the dictionary, HOPE is defined as “an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life”. Sounds about right in this case. By closing the box, Pandora left us with HOPE to combat many of the things she released onto us. To me HOPE is just one of those words. Like faith, or grace. HOPE is a bit different to me though and sometimes serves as a savior. Being HOPEful is different than being “prayerful” in my mind. It’s different than being reliant on fate. HOPE creates ACTION and interestingly ACTION creates HOPE. It is a wonderfully circular process.

HOPE leads the way! It does not sit idly by waiting for something to happen. HOPE makes it happen. It is a force. Not the Star Wars kind either. A real force. Sometimes it has been the only thing that has sustained us during this journey of the past 8 years. Especially these past 11 months. What is amazing to me is that it is derived from other people. Continually. They call, they email, they write, they comment, they post, they “like”, they organize, they participte, they donate, they volunteer. The “they” is YOU. YOU, in turn, are the HOPE. I think that is amazing.

It’s not “blind hope” or “blind faith”. I know we are dealing with serious stuff here. Beyond HOPE I have science, research and brilliant doctors caring for my boy and trying like hell to give him every shot possible. Those elements coupled with the HOPE that you provide is a powerful, powerful combination.

HOPE LEADS THE WAY. Here’s the best part. The more HOPE you give, the more you get back! In the next few weeks we will be ending chemo and learning the results of his treatment. We are HOPEful. We are THANKful to you for that and so much more that words can’t adequately describe. HOPE keeps us going. So thanks. and remember I always close my notes to you with this:

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

Jake, Beth, Jack, Luke and Grace

Allison, Ansley, Blake and CureNFwithJack

This morning I received the video you see here from our friend and tremendous supporter Allison Whitley Maffei.  This is one post I really do not have to write too much about because the video says it all. “If you thing you are too small to make a difference, try sleeping with a mosquito”. I hope you enjoy.

Valor, Wisdom, Presence and Brotherhood

I don’t attend church services very often for reasons that are too complicated and quite frankly irrelevant for this post.  Having said that, I attended a service yesterday at a local church called Stone Creek.  It was nice to do so with Beth and the kids for Father’s Day.  Pastor Steven Gibbs does a great job but honestly I often go for the music. Yesterday though, Pastor Gibbs got me pretty good.  He started his sermon and mentioned three words and went on to discuss them in the context of David from the bible.  Not sure why, but as soon as he said the word “Valor” I became even more attentive.  I just don’t hear that word often.  I hear courage a lot but not Valor.  I hear courage in the context of Jack a lot. I hear brave often too.  Not Valor. Valor, when I do hear it, is usually referring to a military veteran or a soldier.  Valor as it turns out is defined as: strength of mind or spirit that enables a person to encounter danger with firmness :  personal bravery.  Hit me like a ton of bricks.  

For 28 weeks I have been looking at this thing called Valor.  It literally has been emanating from Jack. One only has to see the film we released last month to know what I am talking about.  Watch it again with that definition running through your mind and BOOM, there it is.  Week in, week out.  Day in, day out Jack is showing the world his Valor.  But here’s the thing folks, so is his little brother.  Luke is just 7 and for the past few years of his life he has been fighting this fight with his brother.  Nobody knows Jack the way Luke does. Nobody.  He shares a room with him.  He shares almost every waking and sleeping moment with him.  They share their 7-9 year old perspectives on the world.  They laugh at the same poop, fart and other gross jokes.  They love each other and piss each other off.  If Valor is personal bravery then Luke has it in a nutshell.  The first time I saw him cry FOR his brother was when he first saw the “Jack’s Journey” film at the tourney.  This is when I realized how much he understood.  How sad he is.  How fearful he is. How much he wants to “fix” things.  All the stuff that Beth and I are going through with our 40 plus years of life and adult coping mechanisms, he takes on as a 7 year old.  

I just love him for that because despite all of this he is a great, great kid. Hard to be objective here, sorry.  His family, his neighbors and his teachers all love him. He is a kind soul to his sister and to other kids he meets.  Competitive like crazy but not at the expense of others. Smart in school and eager to learn.  He engages with kids and adults alike in a very comfortable way.  He and Jack both do. That is what Pastor Gibbs referred to as Presence.  Defined as: a noteworthy quality of poise and effectiveness.  I don’t think I had it at 9 or 7 years old.  They do. I have been told this by others a number of times.  I think Jack’s battle with NF has given them both this gift.  It manifests itself in different ways with each of them but it is there.  In the playground or in the neighborhood yards or at the pool, Lukey has a way of being present and I think it is partly derived from his understanding of the seriousness of his brothers battle.  In other words, they have grown up quickly.  Jack’s presence is the way he carries himself in conversation.  His willingness to give of himself in the most personal way sharing his struggle to benefit him and others.  He allows us to hold events “featuring him” that helps us to raise money and awareness. He doesn’t have to do that.  But, he does do it.  

Pastor Gibbs then spoke of Wisdom.  This was the third word I focused on and it just spoke to me very clearly.  It is defined as knowledge that is gained by having many experiences in life.  Now, at 9 and 7 they don’t quite fit THIS definition and attaching the word “wisdom” to these two young kids may have you thinking I have lost it. But what they lack in the NUMBER of experiences in their young lives is trumped by the DEPTH of their experiences. Jack has experienced more than most adults will ever have to in their lives.  Along the way he has acquired wisdom and imparts it to us often through the way he approaches his struggles.  He educates and tolerates those among us who would ask “What’s wrong with your eye?” Instead of anger or resentment he imparts knowledge to an unsuspecting and often apologetic adult. Luke sees the areas his brother needs help in and encourages him to be better.  He knows chemo is hard and accompanies Jack when he can and when appropriate. Always encouraging.  

There have been a lot of times (too many) of reflection these past 28 weeks of chemo but this week was really a gift.  Finding the right words sometimes is hard but not this week.  May was a great month for CNFWJ and I will be detailing that more soon.  I hope this does not come off as obnoxious praise for my kids for that is not the intent.  Be aware that my 7 and 9 year olds are pains in the butt, annoying, messy and sometimes WAAAAAAY out of line just like all the others.  But the gifts they possess and those that they give allow for them to get a little wiggle room.

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

Jack’s Journey

Tweet #JacksJourney

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

Cupids, Sigma Chi’s, and Front Row

It has been almost 2 months since my last update and for that I apologize.  It means this one may be very long.  It also means that I found it hard to write that last few times I began an update. I am not sure why honestly.  These last 6-8 weeks have given us more to update you on than any other block of time in recent memory.  I just didn’t have it in me before today.  So, in no particular order of importance but more likely chronologically, here goes.  

When I last left you Jack had just turned 9 and was continuing his chemotherapy treatments (this is where I have left off when I tried to write you several times these past few weeks). He is managing amazingly well and has missed only one treatment due to low counts.  He does get fatigued and tired but that is about it. My concern is always what he does not share. He is an incredibly resilient kid and we have to pull stuff out of him sometimes.  Remember he was suffering from multiple headaches every week for almost 9 months and never told us which led to us finding his glioma!  

Jack has been incredibly supported and continues to be by kids who are donating their “birthday money” to CNFWJ or baking cookies or creating custom bracelets that they sell to donate the proceeds.  Others are sending him and his sibling’s gifts and cards and it really helps him.  The generosity is truly the most genuine you can receive and it is wonderful.

On February 15th we participated in the Cupid’s Undie Run in Boston.  We ran through Fenway Park with about 600 other runners.  200 of the runners were on Jack’s teams in Boston. We were the number one fundraiser in Boston, Atlanta and the entire country.  Our 11 CNFWJ teams across the country raised over $200,000 for NF research.  Jack was highlighted in articles, on a news program (where he absolutely killed it) and had a prominent role in the success of the day.  Many of you ran, supported or donated to the run and we can’t thank you enough for shattering every record there was for this event.  Over 350 runners nationwide from 7-70 years old supported this cause in Jack’s name. The whole room sand a special “Happy Birthday” to Luke led by our good friend Hank Morse! 

A week later my high school friend Larry Gordon sent me photos of his girls basketball team what showed them wearing custom-made CNFWJ basketball jerseys.  They dedicated the tournament to Jack and they went on to win second place overall but were in first place here in the Burke house.  Amazing really.  In addition to the awareness, they raised $500.00 for research!  

Upon out return to Atlanta we needed to take a breath and recognize that essentially our 2013 fundraising was over.  The tumors still remain.  I hate that.  However, between Cupid’s activity, our events (golf, yard sales, wine tastings. etc) we raised over $400,000 in Jack’s name for the Children’s Tumor Foundation! Amazing really.  You all are!  And now we reset the clock to $0 and start again.  

Some young men who stopped by our yard sale last year matriculate at the University of Georgia.  They met Jack, asked about him and NF.  They took a group photo with him and wished us all well as they took a truckload of stuff!  A few weeks later I got an email from Chad Camp, one of the guys who said that he and his fraternity brothers want to do “something” for Jack.  The eternal cynic I am, I was not optimistic.  Well, I was proven WRONG again.  The guys from UGA Sigma Chi sent me this website announcing their event http://derbydash2014.com/home.html   Perhaps one of the coolest things I have ever seen.  The entire Greek system is getting behind Jack and I am blown away.  

Several friends got together this year with the Front Row Foundation and raised money to send Jack and his family on an once-in-a-lifetime trip.  About a week ago we had the unveiling of that trip and in April we will be going to Myrtle Beach so Jack can be in the “Front Row” at a magic show.  We are so excited to have the opportunity to share this special trip and event with Jack and through friends like Helen Brown supporting us we know we are loved.  

On March 5th we celebrated Gracie’s 3rd birthday.  She shares her birthday with he “Mama” Mary Anne.  The best mother-in-law a guy could have, period.

We announced this week the Third Annual CureNFwithJack Golf Classic will be held on “Cinco de Jacko” May 5, 2014 at the Alpharetta Athletic Club.  This year we are sure to sell out and have already secured some great sponsors, raffle items and auction items.  If you want to come play in this great event just click https://grow.ctf.org/curenfwithjack2014 and sign up!  With our friends Matt Benson, Dan Allen, Pat Kelly and Mike Nicklaus we will be hosting TWO more tourneys in the early fall in West Palm Beach and Washington, DC.  These events are the backbone of our fundraising and awareness campaign and simply would not happen without many of you volunteering, donating or playing!

Finally, our goals are to continue to help JACK raise money and AWARENESS to stop this awful disorder.  Perhaps it is a result of us being more involved but I hate the fact that I am personally aware that about 6 kids have died from NF since October.  Hate it.  So I keep going. We keep going. We seek out and invite you and your friends to keep going.  I want every year to be the last year we do the tournaments and events so that one year we have a round of “Victory Tournaments” and figure out what other charity needs our help because we went ahead and cured NF!  

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

9 years and 9 million lessons

As I write this Jack is going to sleep with anticipation of celebrating his 9th birthday tomorrow.  Like most soon-to-be 9 year-olds he is pretty excited.  Unlike most he had an appointment for chemo today.  I don’t want to make this update too much about that however.  Just know that today his counts were too low and he could not receive chemo.  Essentially I am learning as I go here but the chemo makes him susceptible to illness.  Giving him chemo this week would exacerbate that so he gets this week “off”.  Stay tuned!  Let’s get to the good stuff which despite the situation we find ourselves in is pretty overwhelmingly cool.  Let’s start:

1.  Jack turns nine years old tomorrow!  As my first-born he changed my life from the moment we knew he was coming and it hasn’t stopped since that day.  He has changed it so much for the better.  A lot of parents feel that way about their kids (I hope) and I am no different.  He has taught me many lessons, so many in fact I could not dare to try and list them.  In his short life thus far he has come to personify the best qualities of people while minimizing the worst.  Compassion, Courage, Dignity, Love, Hope, Humor, Inspiration, Courtesy, Creativity and Self Respect,  There is not a week that goes by (and by my calculation there has been about 460 or so) that he hasn’t shown me one or more of these things.  If you have been following along this most recent journey you well know this.  If you have met or know Jack personally you have experienced it.  I love that when I go to Cogburn Woods Elementary I overhear kids say, “There’s Jack Burke’s Dad.” Or I hear them say ,”There’s Luke Burke’s Dad”. It happens folks, a lot.  And it is said in a way that makes me proud.   I know there is no better way for me to lose my own identity than that.  Which brings me to my next item.

2.  Today at school Jack, along with some other kids, received an award for Character.  Some staff at the school nominated him.  Like his younger brother before him a few weeks back, Jack made us so proud.  I said it then and I will say it now, you can’t TEST for CHARACTER.  You just have to have it.  Despite all of the challenges that Jack faces EVERY day he obviously makes an impact on his community at school and I love him for that.  You see, he could very easily crawl up and feel bad for himself.  He could say “poor me”.  Instead he says, here I come and nice to meet you! I love him for that courage and confidence even under the most difficult of circumstances.  

3.  His community at school led by his great after school teacher and our family friend, Brenda Miller has taken unprecedented steps today to show him that they are with him!  This morning they announced a CureNFwithJack Tshirt sale with all proceeds going to the Children’s Tumor Foundation.  Additionally, tonight they held their annual talent show and all of THOSE proceeds are going to CTF.  Just amazing.

4.  Lastly, the Cupid Undie Run.  As many of you know because you are running or supporting this event, people will be running in their underwear for people with NF.  We wanted to put Jack’s stamp on this amazing event founded by one of the greatest people I have come to know, Chad Leathers.  As of this writing we have NINE teams running in SIX cities for Jack.  There are a total of 245 runners on Jack’s teams that have raised a record $54,000 for NF research!  We have been overwhelmed by this response and can’t wait for the event to happen.  

This article deliberately focused on all the good things going on.  Tomorrow is a celebration of a unique life.  A life full of life.  A life full of lessons.  A life full of hope.  Look at the pictures.  Smile if you will.  Tomorrow, call someone to just say hi and make their day.  Do it because it’s Jack’s birthday.  He would think that was cool.  Maybe you will donate to NF research in his name or someone else’s.  Maybe you will donate to another charity.  Maybe you will volunteer somewhere.  Maybe there is a researcher in a lab somewhere working on a drug through a grant funded by YOUR dollar that is the first step toward a cure.  

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

I can’t wait to hug him tomorrow and say HAPPY BIRTHDAY!  

As always, thanks for taking the journey with us.

Jack’s Dad