CureNFwithJack

Sometimes the best plans get, well, interrupted…

For the past 4 years CureNFwithJack has been hosting golf tournaments.  It has been our major fundraising and awareness raising activity.  On Friday, we will be hosting our 4th tournament in Washington, DC thanks to Matt Benson, Carol O’Connell and their committee.  This represents our THIRTEENTH CNFWJ golf event in just 4 years.  It is an incredible amount of work to pull off a successful tournament and it takes an inordinate amount of time, energy and love.  Jack loves these events.  He enjoys meeting the people who are supporting him and his foundation.  It is a real boost for him to see people sharing his journey and showing him he is loved.  

Beth and I get a tremendous boost as well.  We meet people we have never met before and have an opportunity to look them in the eye and say thanks.  We meet the sponsors and vendors who help make these events a success.  We reconnect with friends too. The tournaments allow us to escape from the lousy side of NF even though we are well aware of why we are at the event.  

For almost a year now, Matt and the DC team have been planning for this tourney.  We too were getting ready to return with Jack to the state of his birth. It is always nice to get back and see friends who are now family.  Old hangouts, restaurants and even reconnecting with his DC based doctors are a reassuring aspect for all of us.

As much as we want to do this event this year, we can’t.  In what has to be the worst of coincidences, Jack is scheduled for brain surgery on Friday morning due to complications from NF. Of course, we didn’t know this would happen.  We didn’t plan it this way.  NF just got in the way once again.  He was really bummed about missing the tournament.  Even at this young age he knows what it means for people to host his events. 

I suppose we can take some solace in the fact that our mission, our vision, our very REASON we host these golf tournaments is so that a kid won’t have to miss his own tournament, endure a 4 HOUR surgery, countless MRI’s, weeks of chemotherapy or worse.  In the midst of our war against NF when perhaps it may think it won this battle it hasn’t. Not even close.  While Jack is in surgery there will be over 140 golfers, volunteers, and sponsors in Virginia saying #ENDNF and saying it loudly.  That will sustain us all on Friday and beyond.  

On Friday morning, Jack will have brain surgery.  I still have a hard time saying that much less writing it.  I know he is in very capable hands but it is still tough to comprehend.  He doesn’t know how anxious we are right now.  He never does.  He shouldn’t.  We are doing our best to support him as he faces this surgery.  In the end, it is his fight and I hate that I can’t do anything about it.  I can’t do it for him, because I would in a minute.  I hate that he will be in pain.  I hate that he will be scared.  I hate that Beth and I have to make these choices.  I hate that Lukey has to worry again. I am thankful for the doctors and nurses who will help him.  I am thankful for the technology and science that will help him.  I am thankful for the scores of people who will be taking a moment out of their day and pause for Jack. We get him back probably around noon on Friday and he will be better.  We will help him get there.  He is strong.  He is courageous.  He is brave. He is my hero. As we have said before:         Jack has NF but NF does not have Jack!  

Thank you to all of you in Virginia and all over the world who are supporting Jack and his journey and remember please stay with Jack folks.

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

Neurosurgery and corporate speaking engagement. How was your day?

This past Monday we had to bring Jack for a 2 hour, full-spinal MRI and true to form he handled it like a champ while his Dad limped along through it.  As you may recall, it was discovered that Jack has a syrinx on his spinal column near the base of his brain.  These can be very problematic and the doctors wanted to investigate further so this scan was performed.  All of that is scary. However, NF adds another element…the unknown.  They were scanning an area that they have not examined before.  Undiscovered territory.  Are we going to find more tumors? Another syrinx?  It is crazy what your mind can do if you let it.  After the MRI we were going straight over to meet with the neurosurgeon to discuss what was found on the scan and specifically the original syrinx.  

What seemed to take forever was meeting the doctor in the room.  We anxiously awaited him to come to the point, which he did.  What every NF parent wants to hear is “no change”, “stable”, and “no new tumors”.  That is the great news and we feel fortunate and relished in it for a few moments.  However, that syrinx is problematic and needs to be addressed.  We were discussing the options and the neurosurgeon was great.  He was clear about our options and engaged with Jack and answered all his questions.

Jack has been doing really well since recovering from chemotherapy.  He has gained weight and he has gotten taller and stronger.  He is enjoying school and “on a groove”.  This is what makes me so angry with NF.  It tries to disrupt the good times and makes the bad times worse.  We were told that based on his symptoms he is going to have to have surgery but it is not emergent but imminent.  We decided to monitor Jack for symptoms and schedule the surgery later this year.  If his symptoms get worse than we will intervene immediately.

On Tuesday Jack was the keynote speaker at a conference of professional engineers.  My college friend Kevin Andrews, invited him to speak to his team about creating a “Great Story”. His story.  How he has faced this battle head on against adversity and has created a movement to find a cure for everyone battling NF.  The audience was engaged and asked some great questions which Jack answered flawlessly. They asked his biggest advocate, Luke, what it is like to be in his role as younger brother.  Luke was thoughtful and courageous as usual and offered his perspective while still allowing Jack to be the “star”.  He is simply a great brother.

As we were concluding the discussion, I told the group that this may be the first time they had heard of NF but Jack will not be the last person they meet that has NF. In fact, I said, within 6 months and within two degrees of a relationship, they will know someone else who has NF.  The VERY next night when I went back to meet with them, one of the guys told me that he called home to discuss the presentation with his wife. He told her how he listened to a kid talk about his battle against NF.  His wife responded by telling him that one of her family members has NF too.  I guess he never knew his relative had the disorder!  Within 24 hours we were already educating and raising awareness. Another gentleman from Austria promised to bring the word back with him to his friends and family and to proudly wear his shirt.  Some people even donated to CureNFwithJack right on the spot!

So after another roller coaster week, we move forward again. We are armed with information and determination.  We have you all with us and that is tremendous.  Stay with Jack folks.

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

A complex relationship with a machine

As many of you know, Jack had his quarterly MRI last Monday.  These exams are always anxiety producing regardless of why you find your child in that big constricting tube.  It has become a norm for us and for Jack.  It is part of his life and will be for the forseeable future and it is a bittersweet process.  These machines tell us so much about Jack and I thank God for the fact that the technology exists.  It is life changing and in many ways lifesaving.  It also represents for me the entire lack of control that I have over this process we call #Jack’sJourney.  

Sometimes I walk in and I want to hit the damn thing with a sledge hammer because I know it may give me information about my boy I don’t want to know.  Sometimes it will give me information that I hope to hear. But EVERYTIME, every single time, I don’t know what that MRI machine will tell me. It really is a complex relationship. Perhaps the most complex.  I love it and I hate it. I want to destroy it and I want to worship it all at the same time.  There have been days when I simply want to destroy it.  There have been days when I want to kneel before it in thanks. Then there are days that I want to do both.  Like today.

Yesterday I played in a charity golf tournament for the great professionals in my city of Milton that are first responders.  Firefighters, police, EMT’s who go above and beyond.  I knew going into the tourney that we may hear MRI results but I wasn’t sure when they would come.  In or around the 6th hole I got the email from Jack’s oncologist.  I thought to myself let me wait.  I am sure it is good news.  Just wait and enjoy the company of friends and have the typical, terrible round of golf.  Alas, I just couldn’t wait.  So I hit my ball and retreated quickly back to the cart while my friends hit their shots (inevitably all better and further than mine).  

There it was. The good news.  Jack’s brainstem glioma was stable as was his complex plexiform neurofibroma in his left orbital area. A brief sigh and a sip of beer.  

Then the bad news. Highlighted in yellow in the email:  There has been significant interval increase in the syrinx in the upper cervical cord. Increased signal in the cord is again noted below the level of the syrinx. A dedicated MRI of the spine is recommended in further evaluation. 

Two words I don’t like to see in the same phrase signifcant and increase.  I put the phone down and moved on down the fairway and played out the hole.  I texted Beth. We were making plans on next steps before I tee’d off on the 7th hole.  The syrinx is a relatively recent issue in Jack’s history but it is a complex situation.  As I was trying to conribute to the team, I utlimately found my thoughts straying elsewhere.  Google searches on a phone on a fairway about syrinx’s, prognosis and complications will never help your score.  However, if you have ever played with me you know even this news is not an excuse for my play.

We will learn soon of what the next MRI on his spine reveals. I may or may not bring my sledgehammer. If I do, maybe my good friends at Milton PD will help me out (kidding, of course). Surgery on his spine is possible.  As I have always said, I wil share with you the good and the bad.  Keep Jack in your thoughts.  Will update whe we have more to share.

On another note save some thoughts and prayers for our neighbor Mary Elizabeth Paris.  She is fighting (AML) Leukemia and she and her family have requested prayers for her.  An incredible 11 year-old girl with a great family who are fighting the battle of her life.  

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

This cuts close to the bone…

It has been a while since I last wrote an article here, in fact, I have not had this much time between articles since I started to write down my thoughts about all that encompasses Jack’s Journey.  This is not, mind you, because there has been nothing happening. On the contrary actually.  But I write only when I am “moved to do so”.  It’s hard.  Trust me.  But I have been moved to write today like I have never been before.  

Many of you know the man in the photos is Drew Leathers.  Drew recently turned 28 and has been battling a form of NF called Schwannomatosis.  It is a rather severe form of NF (Jack has NF1) and can devastate the person that has it, in many cases the person dies from it.  Drew died today.  While we know he was born with Schwannomatosis my understanding is that the real battle started some 12 or so years ago and has been relentless ever since. Countless surgeries, pain medications, radiation and chemotherapy treatments, physical therapy, is what Drew and his family have endured because of this terrible disorder.  

Drew was one of my friends.  He was also one of my heroes.  It sucks to lose a friend AND a hero much less a son, brother, or nephew.  I am not going to claim any deep, deep friendship with Drew in the sense of how most friendships are defined. I am almost 20 years older and a lot less cooler than he ever was and lot less funnier too. He had a way of making you feel OK.  He owned the room he was in and not because of his wheelchair, in spite of it.  But we had a connection through the NF community but it was more than that to me. He was courageous in countelss ways.  I never had the courage to do most of what he already accomplished in his life, least of which was doing stand up comedy a few months back while in the throws of his battle.  Amazing really.

I watched Drew battle back under the love and guidance of his Mom, his brothers and his family many times.  Hundreds of people got to see him get up out of his wheelchair, a feat of magnificent proportions that I never thought would happen. I watched him and I learned.  I watched him hug Jack and Luke and it was great.  Kids tell you everything you need to know about somebody.  My kids loved Drew.  Drew was cool.  Beth and I will need to find the words to tell them soon.  

I watched as Cupids Undie Run grew and grew into what is now a national phenomenon that has raised close to $8M in 5 years for NF research.  He inspired all of us at CureNFwithJack to create our teams and it became a senssation within the phenomenon!  In 2 years CNFWJ and the runners on those teams raise $400,000 for research and promptly became one of the biggest fundraising mechanisms for Drew’s race.  

He showed me that I need to do more.  One of the last times we texted I told him I loved him and asked what I could do for him. “Just keep being there for your boys (and girl). It is my family that got me this far. And they will get me through this as well. Y’all just keep being badasses. Love y’all.”And so I have my directive from my hero who died today. You may read this and if you didn’t know him, you wish you had. Well, don’t worry you know him.

If you have lived life, you knew Drew.

If you have known laughter, you knew Drew

If you have known pain, you knew Drew

If you have known courage, you knew Drew

If you have known love, you knew Drew

If you have known struggles, you knew Drew

If you have known HOPE, you knew Drew

When I went to his “FUNeral” it was absolutely packed. I have never experienced anything quite like it before. I was not surprised, in fact nobody was except maybe Drew. Hundreds of people came to say goodbye the way he wanted it to happen. The line went on forever. People were grabbing a few moments of precious time. People I knew. People I didn’t know. Other “NF parents and families”. Community members, friends and family. It seemed like the entire Cupids Undie Run crew was there too. It was quite a tribute to him.

I was fortunate to share my moment with him. The last thing he said to me was not profound, in fact, in true Drew fashion it was more profane! And it was great. However, the second to last thing he said to me was “I love you, man. Keep doing what you’re doing.” So, I got that going for me which is nice. Peace to you Drew Leathers, your family and friends.

We will keep Cupids going.  People can sign up by clicking here and selecting Jack’s team in their town!  We will keep CureNFwithJack going and we will beat this Drew.  In your name.  

I love you.

It’s working- Thoughts from Jack’s Mom

CNFWJ: IT’S WORKING

It’s Jack’s Mom here. I know, I know, the blog is Jake’s thing – and I’m so grateful for that (more on that later). But I can’t help but share something that hit me like a ton of bricks this past week.

Those that know Jake and I know that we are connected to and fighting for each and every individual who is affected by NF. Many of them we do not know. Some of then have touched our lives deeply and are connected to us forever. All are important.  All need their voices to be heard.  That said, when Jake and I began our journey as NF advocates – but always as parents first – above all we wanted to give Jack HOPE. We thought if nothing else comes of it, Jack could witness firsthand that there is so much good in the world, and so much support behind him, and that, because of this, he has the strength and the power to fight and to make a difference. That HE has NF – not the other way around. That he can find strength to cope beyond the chemo and the surgeries and the anxiety and the sadness and the worry.  If nothing else. Well, it’s working.

Jack is part of the NF registry. This is an incredibly important tool created by the Children’s Tumor Foundation (CTF) which collects anonymous information on individuals with NF so that, among other things, matches can be made for potential clinical trials, and also hopefully get the attention of big pharmaceutical companies to prompt more trials.  Both personally and collectively as part of the Georgia Chapter of CTF, I have been a big proponent of the Registry, and many in the NF community have heard me encourage, plead, beg and even harass those to join. It’s a natural and vital next step to a cure. Needing to “walk the walk,” Jack and I signed up for a recent opportunity about which we learned through the Registry to participate in a study about plexiform neurofibromas – specifically concerning treatment outcomes that are most important to patients.

It consisted of two 45-minute phone interviews; one with me and on with Jack. Suffice it to say that during my interview, I was asked and relayed Jack’s medical history and how it has impacted his life in every way – physically, mentally, socially, and emotionally. Then, last Thursday, Jack had his interview.

I set him up in our dining room so he could have some privacy – it is his experience after all, no one else’s (well, and yes, Luke and Grace can get pretty noisy). I could hear him talking quite a lot and for quite a while, but could not hear what he was saying.  Towards the end of the interview, I couldn’t resist. I had to see if I could hear any of the substance of the story he was telling.  I snuck into the living room, at which time I heard him say: 

                               I know this sounds funny, but in some ways I’m glad I have NF. If I didn’t, I wouldn’t do the fun things like fundraising or get to know all the people that support me.

Trying not to gasp or fall, I hung onto the banister a little tighter. I wasn’t going anywhere – I was hooked. I was all but screaming inside to Jake, who wasn’t even in town at the time: “It’s happening! It’s working!” Jack then described what a good time he had the previous weekend at CNFWJ’s DC Golf Committee swanky event hosted by Matt Benson and Carol O’Connell, where he was able to perform his magic act and dress in his “James Bond” tuxedo.

The next question was apparently about being treated differently by his peers, to which he responded:

    Yes, my friends do treat me different – but in a good way.  They know they cannot rough house as much with me because of my NF – because of my port – they know to go slower with me.

Words cannot describe the difference in Jack’s story today as opposed to a few years ago, when he would frequently come home with a story about a kid who pointed at his eye, or made fun of him, or when he would witness kids whispering. It really knocked him down. It started to hold him back from everyday interactions on the playground and elsewhere. But now, because of all that YOU have done, he can tell his story with confidence. I must in particular thank Brenda Miller – and all of the teachers who took her lead – for starting the movement at Jack’s school, with almost every student (an many staff) in the entire building now owning a CNFWJ shirt. Far from worrying about peers making fun of him, he now walks around the school like a celebrity. I’m just Jack’s Mom there (no better title).  But I digress…

Finally before the interview ended, the researcher must have asked if Jack had anything else to share.  This was a big one:

Yes, do you know about my video? It’s called “Jack’s Journey.” It has been seen all around the country.  Actually, people all over the world have seen it! You should watch it. It explains   a lot – it’s good!

Holding back tears and trying to tip toe out of the room before my strong, eloquent boy noticed, I savored the moment – especially in the face of knowing how fragile his experience is and how all can change in an instant. I thanked God, and thought of Duane Codrington – who singularly transformed the face of CureNFwithJack by coming to our house one day and asking us if he could (please!) document Jack’s story. It’s working.

It’s working because of all that YOU have done and will do. And it is so much more than giving Jack HOPE – it gives all of us affected by NF hope.  Thus, it goes without saying that my gratitude is actually an emotion – a feeling so big and indescribable that I will not try.  However, I know so much of my gratitude belongs to my husband. I write for a living – but my writing is immersed in facts and argument and advocacy (and other boring legal terms I will spare). Yes, I can write about the future of NF and the hopes and dreams of a cure that we have. But sharing our painful experiences? Well, I often don’t have the strength to relive them, which writing necessarily requires.  All of us know the power of Jake’s stories have in exploding NF awareness.  He does not write because he wants to. He does not write because it is easy.  He writes because he knows – because we all know – that it has and will make a tremendous difference, that it has and will transcend any other type of awareness campaign on behalf of those with NF – because it is hard and painful and necessary and fruitful and hopeful and inspiring.  After all, it has changed Jack from a boy who happens to have NF to a fighter who is recognized in parking lots, grocery stores and restaurants. For that, and for garnering the strength when I cannot, I am eternally grateful. Jake – it’s working.

Don’t forget!!!  Click on the word Golf to learn more about our tournament that will be sure to sell out on June 15th! 

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

Jack’s Mom

Went shopping for groceries and got some perspective

If you have kids and have ANY sense at all you know that taking them grocery shopping is just about the worst idea on the planet.  Well, guess what?  On Sunday, Beth and I were running around with all 3 kids (10 and under) trying to finish errands and so we HAD to go to our local Kroger store.  (Quick digression that Kroger also happens to be a big supporter of CNFWJ)!  Anyway, there we were on a rainy Sunday at Kroger.  The kids were hanging on the cart or fighting to hang onto the cart or just fighting.  This shopping excursion took about 1 hour real time but felt like a week!

As we were meandering along the aisles each child would consistently ask for something that:

A. We never buy.

B. Never WOULD buy

C. Items with 100% sugar plus 100% corn syrup plus 100% fat.  Yeah, I know it adds up to 300%. Just go with me.  

As we collected our groceries, refereed fights, settled arguments, we made our way to the check out. We had a cart full of sustenance.  As we began to unload at the checkout belt the woman in front kindly mentioned she wasn’t finished unloading.  I said, “I am sorry I think I’m just trying to get out of here as quickly as possible!” She smiled and continued to check out.   Beth went back to grab “one last thing” and we waited.

My back, now turned away from the woman while I was talking to Luke, got a slight tap.  It was the woman.  She asked, “Is that Jack?”  I said “yes” somewhat hesitantly.  “CureNFwithJack!”, she said enthusiastically.  Jack, said yes that’s me..with a hint of a smile.  She turned and said, “You’re his Dad, Jake.  I follow Jack’s Journey! I was going to message you on Facebook this Tuesday”.  I said “Oh cool, why?  

And before she answered I knew.  In a split-second I knew.  Not the details, but I knew.  As she started to well up with emotion, I knew.  I knew I was talking to an NF MOM.  She continued to say that she too has a son with NF and like Jack he has a plexiform neurofibroma in his orbital area.  Apparently that has been the only way NF had manifested itself with HER son…until recently.

We listened and unloaded as she explained that her son was recently diagnosed with a tumor in his abdomen and that he was going to have surgery on Tuesday.  Beth and I were holding back tears as she explained all the known and the greater unknown that was coming.  She was so courageous to share her story.  As she was leaving, she said she would be in touch and that she lives close by. We asked her to share any updates.  

She thanked us for CureNFwithJack and all that we are doing.  I wanted to share this with all of you…look what you’re doing!  Through your support of Jack and CureNFwithJack we are making a difference.  We are offering hope, guidance, and comfort where it is needed most.  So yeah, maybe you golf with us or buy shirts or like our Facebook page or retweet a tweet.  All of it matters.  You matter.  Because all of what you do made this interaction happen.

I was so proud of Jack and Luke that day.  They listened to this Mom intently and learned about another family and their battle.  Later, Jack told me that he felt bad for THAT boy and we need to do more!  I said I know Jack.  And then he said, “I’m kinda famous” with that smile as he joked.  I said, yes you are.  

Please join me in hoping that this boy and all the people impacted by NF will see a cure or an effective treatment soon.  CNFWJ is now a 501c(3) official charity and your donations are tax deductible.  Your money goes to research.  Your money goes to action.  Your money will lead to a cure.  Thanks as always. You can click here to easily donate.

Don’t forget!!!  Click on the word Golf to learn more about our tournament that be sure to sell out! 

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

Jake, Beth, Jack, Luke and Grace

I’m not scared, I’m worried.

Today was bad.  Not as bad as some, but more than most.  This was a tough week in that the priest who married Beth and I passed away and we had the funeral today. Almost 12 years ago on May 17th (World NF day) in coincidences to end all coincidences, he lovingly and graciously married us.  Today we said goodbye.  Earlier in the day, Beth and I had a follow up meeting with Jack’s doctor(s) regarding his MRI reading as it relates to his brainstem glioma and NF.  It did not go well.  At all. Worlds do collide.

It seems that in the 4 months since his forty eight f’ing weeks of chemo to shrink his tumor by 5 MM it only took 16 weeks to get 20% of it back.  I don’t apologize for the sentiment or the language.  Additionally, my boy has developed a Syrinx on his spinal column that may require surgery.  These “little gems” can cause Jack to lose feeling in his upper extremeties (arms/hands), faux sensation to heat/cold and another myriad of symptoms. He is asymptomatic currently but we don’t know how that may change. It may stabilize itself or it may grow larger necessitating spinal surgery.  More info is available by clicking http://www.chiaricare.com/Related-Disorders/Syringomyelia.aspx

His tumor may continue to launch a “comeback” or stabilize, we don’t know.  Fun right?  His current course of treatment is to watch the progression.  Watch the Syrinx.  Watch the glioma. Watch for symptoms. Instead of an MRI every 6 months he will now receive one every 3 months.  His port (which he hates) is to stay in for now.  He heard that today.

Jack and I went to a post-appointment lunch.  I am a big spender so we went to Subway.  Eat fresh.  We sat down and I simply had nothing to say. We split our tuna sub and began munching away.  I stopped and looked at him as he pounded down the sour cream and onion chips.  I asked him, “Are you ok?”.  “Yeah”.  Was the 10 year-old response.  I DIDN’T want to ask the next question, but I did.  I am his father after all.  “Are you scared? Is something bothering you?” He looked at me for about 5 seconds and responded as I munched on our shared 12 inch tuna sub (cheese and pickles!) “I’m not scared Daddy. I am worried.” And he took a bite of his sandwich.  He looked at/through me and it all happened in seconds. A small wave of nausea came over me and I didn’t know what to say.  As a defense mechanism, ( I suppose) I asked him to repeat what he said.  He did. I composed myself and asked what he was worried about and he said, without hesitation, more chemo. More chemo as if forty eight f’ing weeks was not enough.  He then stared off for a few seconds seemingly to spare me what feelings were REALLY going on inside.

This is where it gets to be a challenge.  Beth and I always include him in EVERY conversation regarding HIS health and/or CureNFwithJack initiatives.  Today, I reaped what I had sewn.  My boy was worried and rightfully so.  Jack was anxious and who could blame him?  I was sitting 2 feet from him.  I’m his father and I asked, “How can I help?  How can I make you less worried? What can I do?” His response was quick and deliberate. His response killed me. “Nothing Daddy, you can’t do anything”.  

I froze momentarily.  Swallowed the tuna and everything else I wanted to puke up and responded.  “I am sorry Jack.  Daddy and Mommy and hundreds of other people are with you Jack.” He said, “I know Daddy”.  I said, “You are not alone here.” He said, “I know Daddy”. 

Conversations you do NOT want to have with your 10 year-old.  Days you do not want to have with your boy.  Being honest, it is a day where you want to curl up and die. But you can’t. I need to do more!  Our committees need to do more.  Our events need to raise more awareness and dollars!  We need to fund more clinical trials!

We are gearing up for the 4th annual CureNFwithJack golf tournament in Atlanta on June 15th!  Are you in?  Stay tuned because it will sell out for sure. You can play, sponsor, volunteer or donate! Questions? Let me know.

Let’s keep going. Together.  We will find a cure.  Together. 

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

Jake, Beth, Jack, Luke and Grace

Affirmation Day

Today was one of those NF days.  All that really means is that the day is likely going to suck.  Specifically, Jack was experiencing pretty bad leg pain for the last 24 hours.  Now, it more than likely is nothing but last night in anticipation of a doctor’s visit many things go through the mind and now HIS mind too.  Dad, he asked, it’s not a tumor doing that, right?  He’s 10 now. He gets it.  I said, no OF COURSE NOT (knowing I was thinking the same thing).  Today was also a visit to the eye doctor to see if his vision is stable, the tumor is stable, etc.  All in all not a fun day to start.  We went to the doctor early and fortunately it seems that it is a ligament strain…no growth. However, NF is still a cause.  One of the many things this disorder does to his body is make it weaker and susceptible to these type of injuries.  After that visit he was hungry so we went to get some breakfast…his choice.  IHOP!  We had breakfast.  We had a few laughs and it was time to go and get ready for our next appointment.

Now, some of you may recall an incident I have shared from about 5 years ago when an older gentleman in breakfast line at a McDonald’s asked Jack “What is wrong with your eye?”  Jack was five.  Jack looked at me and I answered for him and lied.  I told the man he just “bumped it”.  A few minutes later, Jack asked me why I lied and since that day I have NEVER protected the questioner over the questioned, and I will never do it again.  Fast forward to today.

Checking out at IHOP and we were waiting our turn at the exit.  The man getting ready to check us out was smiling and said goodbye to a woman as she was leaving.  She said goodbye and in doing so she turned and saw Jack.  This all happened in seconds and maybe because of past experiences, I “knew” what was coming and was getting “ready”. Unlike 5 years ago she made no mention of his eye.  It went like this:  

Woman:  Are you Jack?

Jack: Yes I am. Hi.  

Woman: ” I know you.  I follow you on Twitter.  You are CureNFwithJack!”

Me:  Jaw dropped.

Jack: “You follow me on Twitter? Cool, thank you.”

Woman:  “You are welcome and thank you”

Me:  “Hi, I am Jack’s Dad.  You follow him on Twitter? Awesome, Thanks so much”.  Noting that she is not a teacher or a neighbor and becoming more amazed all at once.

Woman to Jack:  “I hope you had a good breakfast and have a great day!’

Jack:  Thanks

We paid and we left.  I was still taking it all in and trying to control my emotions and astonishment at just what had happened.  Jack cuts right to it.  “Dad”, he said, “I am kind of famous like Ryan Eversley.  People know me and what we are doing with CureNFwithJack.  We have to call Ryan and joke with him.” “Of course we do”, I replied and we did.  That was a great conversation!

We went to the eye doctor and got a fantastic report thank goodness.  But I have been replaying this simple 30 second interaction today over and over. Our friend who follows us on Twitter was just saying hi. But what I heard and I hope you take from this is that she said a LOT more.  She said:

I know your story.  I believe in your journey Jack.  I don’t see anything wrong with your eye.  I see a boy in a battle.  It will be OK.  I am with you. Keep going.

To all of you who support Jack on Twitter or Facebook or in person, thank you. If you ran in your underwear and shared that story, thank you.  If you played in a golf tournament or donated to our yard sale, thank you.  If you are Brittany Downing and running the Boston Marathon for Jack, thank you.  What happened today was AFFIRMATION.  Not just for Jack and the Burke’s but for ALL of us. We are doing the right thing.  We are raising awareness.  We are raising dollars. We are helping to find a cure.  Today was NOT one of those NF Days in large part, because of you.  Thanks

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

Jake, Beth, Jack, Luke and Grace

TEN…It is a big deal.

“And what would you intend to find?  
Solitude? Your peace of mind?
Holding out for something less
Than touching the hand of God?”
–Kevin Griffin, Better Than Ezra.  “Closer”

The video is an oldie but goodie and the song that accompanies it was written about a new Dad experiencing fatherhood for the first time.  We played it often when we were expecting each of our children.  Kevin is a supporter of Jack and if you listen to the words I think you will agree that he does a great job of capturing the emotions of what it means to be a new parent.

If you have children or if you once were one, than you know moving into the “double digits” is a big thing!  My oldest, Jack is going to be TEN on Saturday.  It makes me feel old because I am old. Jack has informed me approximately 3,618 times over the past few months that he will be TEN.  He has told me how many days until he is TEN. He asked me several times to calculate how many hours and minutes until he is TEN.  It is funny how many of us stop getting excited about our birthdays at some point and come to loath the day and what it tells us. Kids, and Jack is no different, embrace it!  They are giddy, joyful and excited.

Birthdays were celebrated in my home growing up too.  Mom ALWAYS made the cake and it was awesome.  I remember one late summer in particular when the City of Medford had a crew repairing my street.  Apparently the guys let me hang around the site (imagine that today), befriended me and allowed me to go to “work” everyday.  Yellow hard hat. Lunch break. The works.  I also remember my birthday that year. It was in the back yard and the vision of these big, burly guys walking into the party to celebrate with a few of my friends and me.  This has to be over 40 years ago.  They bought me a metal TONKA dump truck.  Yellow with a green bed that had a lever you pushed and the hydraulic pump slowly lifted the bed up to dump out the contents.  Still one of the best gifts I have ever received, ever.  More importantly, they gave me their gift of friendship, kindness and acknowledged I was important to them.  I think it helped me feel good about myself and maybe more confident too. That birthday was a big deal.  But enough about that.

When Beth and I were planning Jack’s birthday for this year we discussed many options and ideas and then we were going to share them with Jack. Then we wanted to hear some of his ideas. In the end, and with his input, we are having a celebration.  TEN is a big deal.  Over the past 2 weeks or so I have been reflecting on this day.  I think back to September of 2013 when Jack first got diagnosed with a brain stem glioma.  He wasn’t quite NINE at that point.  It was not too hard to remember the many, many days and nights of chemo, post-chemo sickness, days in bed with fatigue, headaches, moodiness, anger, frustration and sadness he was experiencing.  I couldn’t fix it.  I also remembered the places my thoughts sometimes would take me and I hated that too.  So, we are having a birthday celebration. We determined he deserves it.

In the 4 short years we have been working with CureNFwithJack and through his work and your support, Jack has raised closed to $750,000 for NF research and has supported the Childrens Tumor Foundation.  So we are going to have a great day for Jack.  I have been fortunate to have married Beth and to have three great children.  They are a gift.  The friends, family and acquaintances that have made Jack’s battle their own are a gift. The nurses, doctors, research scientists, fundraisers, administrators, organizers and donors I have come to know are a gift.  The famous and infamous that have joined our fight are a gift.  I have come to think of you all as “Jack’s crew” like the one I had all those years ago.  They made a life long impression on me and a huge impact too.  That’s what you have done and continue to do and the stakes are much higher than what they were for me in 1972.  I know that and you know that.  You are his crew.  You give him hope, encouragement, joy and love.

The gift that Jack has given to me is immeasurable.  He has shown me my own humanity and mortality in a way no other person ever has or will.  He has shown others (I have been told countless times) how to be brave and strong in the most adverse of times.  He has shown me humor when nothing, absolutely nothing, was funny.  He has shown me grace in the face of ignorance.  He has shown me tenacity when there was not much more fight to muster.  He has shown me valor.  He has shown me how to be confident in spite of how others may perceive you.  

In TEN short years, Jack has given me more than I can ever pay back.  So, on Saturday we will celebrate the life he has lived thus far.  I will, at some point stop and observe him and with great gratitude be thankful that I am with him. I am thankful for him and the many gifts he has given me and to others.  I will think of my crew and of all of you, Jack’s crew. You are all much better than that priceless TONKA truck. I’ll take the gifts you have given him any day.  It is a BIG deal.  Thank you Jack O’Brien Burke.

Don’t forget Cupids Undie Run is coming to your town!  Jack has 10 teams across the country!  Join one or donate to a runner by clicking here:

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

Jake, Beth, Jack, Luke and Grace

Sometimes magic is not about the tricks…

2014.  Quite a year for the Burke’s. For many reasons it is one I am not too anxious to ever repeat. Yet in the midst of some pretty terrible circumstances we found and experienced incredible caring, grace, love, and triumph.  The accompanying video is Jack’s entry into his school talent show last week.  He decided to do 3 tricks.  Our good friend, Duane Codrington was there to film his beautiful daughter Sammie performing and I asked if he could film Jack too.  You may recall the film Jack’s Journey…that too is Duane’s work.  It occurred to me as I watched Jack on stage that there was magic just in that.  He was on stage.  He was energetic.  He was funny.  He was confident. He was alive.  What an incredible thing.  If we were just in the previous December this could have never happened. NF and chemo were crushing Jack.  NF and chemo were crushing us.  Yet, there he is with his cape, magic hat and wand killing it on stage with improvisational banter.  I was overwhelmed.  He is so brave.  Confident. Funny.  I hope he is always that way.  So yes, there is “magic” on this film but it is not the tricks.

As we wrap up 2014 and roll into 2015 we still have a battle ahead. As many of you know, Jack beat back his tumor but it is still on his brain stem.  Small enough to be watched but chemo is not needed.  We will start 2015 with an MRI that will hopefully provide us good news that will allow him to have his port in his chest removed.  The MRI will reveal stability and no OTHER tumors.  And that will be our baseline for the fight of 2015.  We will once again run in our underwear to raise awareness.  Jack, undoubtedly will once again garner enough support and his situation implore more people to help him fight and break fundraising efforts.

We will host our golf tournaments again.  They will be fun times.  They will be hard work and countless volunteers and friends will plan these events to be the historical successes they have been. Leaders in the fight like Dan Bowes, Matt Benson, Dan Allen and Pat Kelly will insure the success.  Our neighbors and friends across the country will have their own fundraising events, wear t-shirts, hats and bracelets and tell the world about CureNFwithJack.  People like Jack Flynn, Tracey Stack, Conleth O’Flynn, Tom Pattillo, Jeannine Jannot, Dave Stordy, Mason Gates, Stewart Rahr, Joanne McKay, Kelly O’Hearn, Beth Penney, Jennifer Barr Jack Nicklaus, Michelle McGann, Ryan Berube and Randy Bitting will organize, support and participate in events. Helen Brown will continue to tweet about Jack. Ryan Eversley will race this year perhaps the most important year of his career with Jack by his side. Literally and figuratively.  His friends who have become our friends and fighters will do the same.  Andy Lally, Spencer Pumpelly, Ashley Parlett and Melissa Eickhoff.  Countless others who I cannot name will make a diifference.

New friends will be made.  New advocates will step up. Others who have done much will continue to do what they can to help.  Researchers and scientists will continue their work toward a cure funded in part by the work of CNFWJ.  Barriers will be crossed.  Hope will continue.  Perhaps 2015 will see a treatment for NF.  Inspiration will come from families like the Lee’s, Barabant’s, Bruno’s, Leathers’, Moss’, Watts’, Watkins’ and so many more who battle every day to find a cure for all those with NF.  

Finally, there will be vigilance, tenacity and determination.  That will be our continued call.  It will be our journey again and for every year until there is a cure.  You will decide to share in this to whatever level you feel comfortable and it will be sheer brilliance.  You will know the difference you make by simply liking Jack’s page on Facebook or making a comment on a photo. 

2014 was not magical.  I am glad in many ways to see it go.  I will tell you this though…there were plenty of magic moments, many of them because of you. So we wish you all a great Christmas and a phenomenal 2015.  It will be for the Burke’s!  Pastor Steven Gibbs at church service today told us that we should hope big.  “Don’t get you hopes up” is the wrong message. I was stunned at the timing of his speech today.  We DO HOPE big at CureNFwithJack.  And we realize that HOPE soon.

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

Happy New Year!

Jake, Beth, Jack. Luke and Grace Burke