Posted on April 9, 2018
A Childhood Gone Too Soon
In the 10 plus years that we’ve been dealing with NF, we have faced lots of uphill battles. The pain associated with many of those episodes often assuaged by the encouraging and thoughtful words and deeds by so many of you. I am the first to realize that while we have had some hardship, there are other families of sick children with NF and other disorders, too many to name, that are in a much more difficult predicament. I know that. But this isn’t about that. This is about a childhood. A childhood I listened to just rush away far too early into adulthood today. I listened on my phone in some hotel at some conference near some booth where I had a break for a minute. I listened to my boy who was several hundred miles away talk about what he heard at yet another doctor’s appointment. It was to discuss his NF and how it is impacting him. I listened and could do NOTHING. NOTHING.
I heard him say through his tears that “I am nervous, Daddy and I am sad.” Having listened in on the call with the doctor a few minutes prior, I knew WHY he felt this way, but I asked anyway. His sadness, his confusion, his fatigue with this dreaded disorder soaked the phone and made the air in the hotel lobby heavy. My boy’s voice made my heart heavy. I rushed to a secluded corner so as not to make a spectacle of myself, muting my phone so he couldn’t hear me. I tried to offer some encouragement while swallowing my angst.
Being the father of a child with NF has been a terribly brutal lesson in trying to figure out what to do to make it better. That is, after all, a parents job. MAKE. IT. BETTER. During our brief conversation,I resisted the temptation of telling him things I cannot possibly know including “It’s going to be OK” or “Everything will be fine” or simply implore him to “Don’t get upset, buddy”. There is a myriad of other stupid things parents like me tell their kids to try to make it better. I know it’s bullshit and most importantly, Jack does too.
Nope, I listened. I said I was sorry and that word is just about the most inadequate word I could say to my boy who is no longer my “boy” after today. He is a man. In many ways, I think he has been a man for a while. He sits in a room with adults talking about HIM. He does not sit idly by and just listen. He LISTENS and asks questions and shares his thoughts. That level of engagement, by any measure, is a man. Listening to scary, unpronounceable things like Plexiform Neurofibroma, Syrinx, Glioma, Ventricles and then learning in real time the presence of new challenges and not losing it right there makes him a man. He is just thirteen years old.
NF has taken a few things from us over the years but today I feel like it took Jack’s remaining years of childhood. I hate it for that. Sure, he still will do “kid things” and yes, he is only in middle school, but this disorder has forced him to confront issues that make most adults quake in their goddamn boots. And I hate NF for that.
So, I told the man that used to be my boy the only thing I could. I told him that I have his back no matter what and that it is OK to be nervous and that he is very brave and that I loved him. I told him that I do not know how he must feel but that Beth and I are always ready to hear what he thinks. Jack’s childhood is gone.
The solace that I find in that, if there is any at all, is that he moves to adulthood with bravery I don’t understand, courage I could never muster, wisdom I hope to only achieve and the love of more people than he can count. We will keep fighting with him, for him and for others through our awereness and fundraising initiatives through CureNFwithJack. Our first ever deep sea fishing tournament in Palm Beach is May 17th and our 7th annual CureNFwithJack golf tournament is June 5th. We hope many of you can play, volunteer or donate. We will beat this. Thanks for reading and please stay with Jack. He would like that.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER.
Jake, Beth, Jack, Luke and Grace
Posted on January 23, 2018
Lucky 13
LUCKY 13- Today is the 13th anniversary of one of the best days of my life. I was so excited to become a Dad and all the things that I thought came with it. Jack was perfect. He had 10 toes, 10 fingers, and a big smile that showed you that he was Grampy Burke’s grandson. He brought me more joy then I thought I could ever experience and from almost the very start he had that great personality. Months went by and soon he was walking and talking and singing “Cocaine Blues” by Johnny Cash and learning lots of things from his Mom and me and his favorite nanny, Casey Fox. He was just so great and so was life. My son. What no one prepares you for is the unexpected. Nobody can prepare you. There is no manual.
And so it goes that Jack was diagnosed at age two with Neurofibromatosis Type 1. The physician who first told us thought we already knew but I won’t go into those details. As most of you know, the years following this diagnosis have been challenging. Countless MRI’s, needle sticks, 52 weeks of chemo, brain surgery, eye surgery and endless other doctors appointments.
On the other hand, there has been tremendous joy and accomplishment. Jack has inspired thousands upon thousands of people to join him in the fight to CureNFwithJack. He has raised awareness about the disorder and over $1 Million toward research benefitting others with the disorder. People who wanted to be helpful within their communities have mobilized around him and host golf tournaments, wine tastings, yard sales and many other events. People have given their time, talent and treasure to help us find a cure. Neighbors and friends have been our board members and advisors and caregivers. The stories I could share about out friends and neighbors. WOW. We have partnered with both the Childrens Tumor Foundation and Cupids Undie Run to take that event to an entirely different level. Well-known people and personalities like Ryan Eversley, Michelle McGann, Jack Nicklaus, Andy Lally, and Rodney Harrison have helped us in our efforts. Others like Kevin Griffin and Clint Eastwood have supported Jack along the way.
I can’t change the fact that Jack has NF. I would trade with him in a minute but I can’t. We don’t know what the future holds for him or our family. But I do know this. My boy, my hero, is 13 years old today and that is absolutely glorious. He has taught me more about adversity than I can ever share. He has taught me perseverance, dignity, pride, compassion, empathy and more. He showed me how to be a difference maker. I love him and only worry that now that he is a teenager he will drive me absolutely insane. I am glad he has the chance to do just that. To celebrate Jack today be a difference maker. Volunteer for a cause. Our friends at Sunshine on a Ranney Day or the Front Row Foundation or Cure Childhood Cancer are always looking for support and they do great work! Donate to a Cupids Runner. Donate to CureNFwithJack or the Childrens Tumor Foundation.
The birth of Jack and of course, Luke and Grace are 3 of the greatest days of my life. The gifts that he and they give me are immeasurable and that my friends is LUCKY13.
I’ve stolen these lyrics before from our friend Kevin Griffin, and on this LUCKY 13 anniversary, here they are again:
And what would you intend to find? Solitude? Your peace of mind? Holding out for something less than touching the hand of God?
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER.
Jake, Beth, Jack, Luke and Grace
Posted on December 22, 2017
“So this is Christmas and what have you done?”
There are so many great Christmas songs and my favorite is Little Drummer Boy. Right up there though is John Lennon’s Happy Christmas (War is Over). The first lyric always causes me to reflect on the question it poses and often I feel like I’ve fallen short of whatever self-expectation those words conjure up. I don’t mind because this reflection helps me strive to do more, to be better, to be impactful in some way. A few years back when Grace was attending pre-school at Oak Grove Academy she had an amazing woman as a teacher, Ms. Linda. She was (and is) such an incredible teacher and helped prepare our Grace and every child in her care for the rigors of school. Linda came into our lives when Jack was dealing with the worst of his NF and was a wonderful friend and supporter. As kids tend to do, Grace graduated to kindergarten and left the care of Linda to pursue her education at Cogburn Woods Elementary where her brothers had been busy making their mark.
While she still had Grace in her class, Ms Linda surprised us by asking us if Jack would come to speak to her class about Neurofibromatosis. Apparently his little sister Grace talked about both of her brothers a lot and would often bring up Jack’s illness. We talked to Jack about it and he consented to speak to the 4 year olds about NF. Grace was so proud of him and what we didn’t know is that Ms. Linda had organized the other families and parents to raise donations for CureNFwithJack. It was quite a wonderful day for Jack to speak about NF and empower him to tell his story to an audience. The audience of curious, and well-behaved four year olds listened attentively and Jack shared his story for a new audience.
Yesterday, Jack was invited back by Ms. Linda to share his story with a “fresh crop” of 4 year olds. He had just come off a busy week at middle school where he finished his mid-term exams. When Beth told him he was invited back to “speak to the kids” he was very excited. Once again, the audience was attentive and once again Ms. Linda arranged for a donation to CureNFwithJack.
When I looked at the photos yesterday I was struck at the humanity of all of this. Ms. Linda, who was never Jack’s teacher, could have decided to never get involved. Instead she empowered Jack and our family and helped us educate others about this important topic. She raised awareness and dollars and gave Jack and our family so much more. She gave us hope through her actions. She did it again this Christmas. I see my boy in these photos as someone who knows he has a significant challenge, one that many others would run away from quickly and consistently. Instead he faces it head on every day and invites us all into the most private elements of his life. Through that he inspires others to be good and to do good in a world that is incredibly lacking in those virtues. He fights his fight and brings his NF brothers and sisters with him toward that cure. He makes me so proud.
Coincidentally, Happy Christmas (War is Over) came on as I was reviewing the photos and BOOM! The lyric at the top “And so this is Christmas, and what have you done?” I thought to myself, look what Linda and Jack have done for Christmas? So much good and so much love. That little girl in the picture with Jack is well served by having Ms. Linda teaching her academic topics, but way beyond that the dose of humanity she teaches these young minds is priceless. As for Jack, I can’t be objective because he is my boy but the gifts he continues to bring our family and the community through his courage, humor, tenacity and personality are why I don’t need to ask Santa for anything. Along with his brother Luke and sister Grace I’ve got more than I need.
My wish for you is that you too have “enough” of what you need and that you shine your light toward others if you can. Lastly, I hope you feel good about responding to John Lennon’s question this year and every year. Thank you all for your continued support of CureNFwithJack. 2017 was another great year and 2018 will be too. Stay with Jack, he needs you.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER.
Merry Christmas, Happy Holidays, and Happy New Year!
Jake, Beth, Jack, Luke and Grace
Updated on February 4, 2020
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:
Updated on June 28, 2018
He Stood Up and Started it All
We knew Jack had NF right after his second birthday. For quite awhile Beth and I were pretty devastated by the news that our boy had a genetic disorder. In fact, when we initially found out we were pretty paralyzed with fear. We were young parents with another child on the way and could barely say much less spell Neurofibromatosis or what to do about it. Initially we shared the news with just family and very close friends. The discussions would create more questions than answers and also a heavy dose of angst on the part of the person hearing the news. What hurt people the most is when they heard “no cure” and “no treatment”. I stopped telling people for a while. We spent much of our time seeking out help and advice and resources. The great Dr. Bruce Korf was the first person to officially diagnose Jack with NF. He was kind, honest and deliberate and despite the fact that he was delivering life-changing, awful news he provided much needed information and encouragement.
Back home in Virginia, Beth and I began to identify doctors and hospitals to monitor Jack and provide care as we continued to learn more about the disorder and how it may impact Jack. We continued to do this and began our foray into a myriad of doctor appointments, new medical terms and a whole bunch of anxiety. Luke was a gift delivered at the right time and we were so fortunate to find out that he did not have NF. We learned about different NF groups and investigated a number of them including the Childrens Tumor Foundation. When we moved to Atlanta we soon came to learn about a local group called the Tumornators made up of 3 brothers Drew, Chad and Ben Leathers and their family and friends. Beth attended one of their fundraising events and came home to tell me how great these people were. I had no idea at the time that we would come to be so close to this family and take up the fight to ENDNF with them.
We continued to live our lives the best way we could but still not knowing so much about what the future held for Jack and our family. He was monitored by doctors in DC and of course here in Atlanta as we watched him go from preK to Kindergarten with Luke always close behind. We learned more about NF and what resources were out there for families both locally and nationally. Beth was always looking to help inform our family on what we could do. We joined in the Racing for Research program through the Childrens Tumor Foundation where we raised money to bring Jack to Daytona along with other kids with NF to meet the drivers and sign the car and watch the 24 Hour in Daytona. In 2011 we took our first trip and among other things that were awesome, we met Ryan Eversley. I had no idea that night and over the next day or two how profound that relationship would become and how much he would do to advance the cause of NF.
Then it happened. That evening in a room full of families, who also had people with NF, Jack got up and stood on his chair. He wasn’t the only one who did it but he may have been the only 6 year old to do it. He stood up and told the room that he had NF. He proceeded to talk about whom he was and why he was there and I was standing off to the side while all this was happening. It may have been all of one or two minutes but it was powerful. He had no fear. He shared with a room full of strangers the most personal thing about himself. I was blown away. For 4 years I felt like a helpless father who could do nothing for his son. Sure, we provided the best medical care we could and I think a pretty good life for a young boy but the NF was still there. We needed to find a cure and we needed to do it for Jack and others.
Not too long after that evening we began CureNFwithJack. 6 years later we have accomplished things I never thought possible. We have hosted over 20 golf events, wine tastings, lemonade stands, garage sales, and so much more. We established a social media presence that has over 3,000 followers and created a great website. We had Coca-Cola, Converse, Anthem Blue Cross Blue Shield, Verizon and many other corporations join our fight! We have engaged with the famous and infamous, he has had random people thank him in person because they met him on Facebook or Twitter and his story has helped them. He has been interviewed on TV and radio. We hosted a medical symposium leading to a published article on how to better help people with NF. We have partnered with Cupids Undie Run for the past 4 years and have had teams in 10-12 cities every year, over 1200 runners on his teams and have raised over $800,000 for medical research through that partnership. We have donated thousands of dollars from CureNFwithJack and will continue to do so. Our goal in 2006 was to raise one million dollars in 10 years; we did it in 5 years.
Jack is now 12. Today he goes in for another MRI on his brain. How’s your Monday? I’ve written about that and the associated anxiety so no need to repeat it here. You get it. The world is very different than it was that night when Jack stood up. We have lost some incredible people we knew because of NF. That’s the awful piece and yet there continues to be hope. 6 more years of research has happened. Clinical trials have been increased. Annette Bakker and her team at CTF continue the fight every day. We are not going to stop. 2017 finds us post unide run and now into our first of many events and golf tournaments and other exciting things to come. We are hopeful. We still need you. Jack still needs you. Six years ago, he stood up on a chair by himself and declared war. Today, while Beth and I will once again be with him. He will lie alone in an MRI machine because in the end it is HIS fight. The single most incredible thing that YOU do by attending an event, or donating to our cause or wearing your CureNFwithJack shirt is that you make it clear that you are with him too. It is an awful thing this NF. I hate it. And be sure it is awful to watch your child go into an MRI machine and hope that it finds nothing but good news. But the beauty and the humanity you provide to this brave young man should never be minimized. He stands alone at the most difficult times because that is what he has been dealt, but he need not look to far to see that he truly is not really alone. Send good thoughts to Jack today.
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
Updated on June 28, 2018
A Coach who became a Friend who became an Advocate
It is day 9 of NF Awareness month. As you may know, many kids with NF struggle with core strength issues and other side effects that make it relatively more difficult to play sports. About 6 or 7 years ago, we signed Jack up for baseball. Randomly, he was picked to play on a team and he liked it. His coach was a guy I didn’t know at the time (despite being my neighbor), Marc Fein. Marc was terrific with the kids. Jack was not the best and was not the worst player. He was learning the game. He was having fun and Marc had put together a pretty decent team. Fast forward to the playoffs. Championship game. I know they are six but as we all know it can get pretty intense.
Jack’s team was a run behind. Bases were loaded and there were 2 outs. It was Jack’s turn to bat. Everyone wants to win. I get that. Marc coached to teach and because he is a good man. He is a former D-1 ballplayer himself. As I stood nervously by, watching Jack get ready to bat for the championship I was hoping he would walk or get a single or anything! If he made an out I would deal with that too, after all we had “bigger fish to fry”. I was a terrible player by the way.
It’s coach pitch, so Marc was on the mound. Parents, coaches, kids are all standing at this point. Not sure if Jack felt any tension as he walked up to the plate. Marc was ready to pitch to him. I was about to have a stroke. Anyway, just before he is ready to pitch, he comes off the mound and goes to the plate to have a word with Jack. He put one arm on his back and got down on one knee and said words that I will never know and returned to the mound. “Ok, Jack. Let’s do this and have fun”, he shouted from the mound. “OK”, said Jack from home plate. I was biting my lower lip. I know, ridiculous. Pitch. Swing. Miss. Strike one. Crowd noise increased just a bit. Marc said, “just look at the ball”. It got quiet.
This was before chemo and brain tumors and eye surgeries, although that surgery would be just around the corner. He was a regular kid, playing America’s past time and it was straight out of Norman Rockwell but better. If I had the awareness at the time, I would have realized now that he was a winner no matter what. What I didn’t know then is that NF makes that bat heavier for him. NF makes that ball harder to see and track and hit than others. NF can impact hand-eye coordination. Fact is, he was standing there with just his coach learning, championship be damned. He was amazing. Best of all he was in great hands. His pitcher was his coach. Marc is a Dad himself of some pretty amazing kids and an accomplished ball player in his own right. But right there in that moment it was just Jack and Marc having fun.
So, Marc readies himself and instructs Jack to do the same. Kids are anxiously waiting to hurry to the next base. They want to win. In what seemed like forever, the second pitch came. Pitch. Swing…
HIT!!!! RUN! RUN! Kid on third scores easily to tie the game. NF makes you run slower than most. Jack is no exception. He just needs to make it to first and beat the throw. I swear that day he was running with an anvil in his pants! Kid on second made it to third and the fielder was going for the play at first to get Jack. He threw it which sent the winning run toward home. Jack just needed to get to first before the throw!
Throw. Bounce. SAFE!!! Jack made it to first. Winning run scored. They won the championship. Everyone was happy and jumping around! Except for Marc. He was just standing there obviously happy. I watched him look at Jack and he was smiling and he went and high fived him. It was such a great moment.
Jack had the winning hit that scored two RBI’s to win the championship. He “retired” from baseball.
Career paths took Marc and his family to Dallas where he would be working for NBC as a news anchor. We stayed in touch. He would stay up to date on Jack and was always concerned and supportive. One year he sent some autographed items for our golf auction. Just really great. Interestingly, the family that moved into the Fein house is the Codrington’s. Duane Codrington would go on to film the iconic Jack’s Journey video. Through the past few years, Marc has remained tied to Jack and our family and the battle to fight NF. A few years back he met a local Dallas child with NF and did a profile story on him and his family. He was raising awareness. His experience with Jack had left quite a mark. He wanted to make an impact.
A few weeks back I got a call from Marc and he told me about a baseball tournament he wants to host and use as a fundraiser and awareness raiser for NF. I was astounded but shouldn’t have been. He decided that he could be impactful. Like most people, Marc is in the “unaffected pool”. His children are healthy and none have NF and to my knowledge none of he or Nikki’s family has NF. But you see, that’s just it. This is how we are going to CureNFwithJack. It will happen because of people like Marc. It will happen because of people like you!
If this is not evidence of the kindness, humanity and much needed grace of people that we have had the good fortune to meet, I don’ know what is.
When Marc reads this story it may be the first time he realizes the enormity of his deeds and actions that day. I wish I told him before now, but I hope he reads it today and realizes he is making a difference.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER
Jake, Beth, Jack, Luke and Grace
PS Don’t forget to sign up for the 6th Annual CureNFwithJack Golf Classic on June 6th! https://cnfwj6thannualgolf.planningpod.com/
Updated on June 28, 2018
The Hope at Hopewell and the Bowl of Bracelets
Many of you know that Jack recently started middle school. Now, middle school is a big transition for anyone and my estimate is that about 99.9% of the adults I talk to hated middle school for a myriad of reasons. This is where kids can become jerks, homework becomes real hard and EVERYTHING else that comes along with becoming a teenager. I must admit that I was concerned about Jack transitioning to a new school and carrying with him all things that NF forces him to carry. I thought he might struggle a lot. I thought he might catch some crap from the “jerks” about his eye or something else. I was wrong. I am happy to say that too. I am not foolish enough to think that he won’t experience the challenges that most of us do (and then some) but I thought that maybe some of that would have come already. It hasn’t. Which brings me to today and yesterday at Hopewell Middle School.
This month the school is sponsoring awareness and fundraising activities for several charities including CureNFwithJack. We were fortunate to be selected as one of the charities the community would be supporting. Jack was VERY pleased that his new community of teachers, staff and students would be interested in helping him advance the mission of CureNFwithJack by letting us sell hats, shirts and bracelets. “Daddy, this is awesome!” he said. Leading up to the day he was excited. Despite having to get up early and get the material over to the school and set it all up, he was excited. “Pushing the message, Dad!”
I remember being in middle school. We called it Junior High School back then and it was just 7th and 8th grade. I was fortunate that I had a few friends and for the most part went through those years OK. I wonder how well I would have fared if I had the added burden of a chronic, life-threatening disease. I wonder how eager I would have been to stand out if I had such differences in a world where being different can be socially deadly. As confident as I was through the upbringing at home and 2 strong parents (especially my Mom) behind me, I think I would have just tried to get by. Not rock the boat. Hope for the best.
Not Jack. Yesterday Beth and I accompanied him to the school to staff a desk where we were to sell bracelets to raise awareness and dollars for NF. He was there in his shirt the physical embodiment of our foundation, putting himself out there once again to all the world for a greater good. He was interacting with kids that were buying his bracelets, thanking them, conversing with others and generally having a good time. “Hi Jack!” I heard dozens of times. Several kids who had purchased t-shirts in previous years were wearing them in support; others were buying them for the first time. One of the staff members suggested we take the basket and go to the dining hall where lots of kids were waiting for the first bell. “Go sell some in there”, he said. So Jack and I went in. I asked if he wanted me to come with him and I could see a hint of trepidation. “Yes, please”. So off we went and we sold a bunch. Shortly after we were done selling and I packed up and left and Jack went to class. Beth was off to work. Another day…another step closer. Later in the afternoon Beth called to say that they wanted us to come back tomorrow and sell some more. We had raised an impressive $276 toward the schools monthly goal! Jack insisted we return. And so today, we returned.
Today we had bracelets, t-shirts and hats again. Today, the kids were told we would be there. Today we raised over $400! We had kids who were buying $1 bracelets for $5 and insisting we keep the change “for Jack”. We had kids bringing in their change to scrape up a buck so they too could wear a bracelet. We had kids by t-shirts for $10 and pay with a $20 and refuse to take the change. “My Mom said to keep it.” It really was amazing today. Probably my most productive hour all month!
The bracelets were going well once again and we were pleased. I asked Jack if we should go back to the dining hall to sell some more. He said “Yea, sure Dad.” He grabbed the bowl and I started to follow him in, you know, to be the big supportive Dad. “Mr. Sales Guy”. He took a few steps and turned to me and said, “I got this Dad, I can do it myself.” He had the bowl of bracelets a few dollars for change and just kept walking. With all the confidence in the world in a new community that he (and we) is hopeful would embrace him and the cause, he walked in and said, “Who wants to buy a bracelet?” It struck me how brave and courageous he is and continues to be in the face of adversity most of us would lie awake at night about. He knows Monday is MRI day. He knows he will likely get good news that his brain tumor is stable. He also knows he could get bad news that it is not stable or a new tumor has grown. He knows this. I know this. But today, that didn’t matter. Today he had a bowl of hope and awareness to share. Today he asked his new community to share the bowl and become part of the hope of Hopewell and they did just that.
A special “shoutout” to Ms. Sosebee, Mr LeMoyne, the staff and faculty at Hopewell Middle School and the PTO for organzing this incredible #HopewellStrong month!
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER
Jake, Beth, Jack, Luke and Grace
Posted on September 21, 2017
The Hope at Hopewell and the Bowl of Bracelets
Many of you know that Jack recently started middle school. Now, middle school is a big transition for anyone and my estimate is that about 99.9% of the adults I talk to hated middle school for a myriad of reasons. This is where kids can become jerks, homework becomes real hard and EVERYTHING else that comes along with becoming a teenager. I must admit that I was concerned about Jack transitioning to a new school and carrying with him all things that NF forces him to carry. I thought he might struggle a lot. I thought he might catch some crap from the “jerks” about his eye or something else. I was wrong. I am happy to say that too. I am not foolish enough to think that he won’t experience the challenges that most of us do (and then some) but I thought that maybe some of that would have come already. It hasn’t. Which brings me to today and yesterday at Hopewell Middle School.
This month the school is sponsoring awareness and fundraising activities for several charities including CureNFwithJack. We were fortunate to be selected as one of the charities the community would be supporting. Jack was VERY pleased that his new community of teachers, staff and students would be interested in helping him advance the mission of CureNFwithJack by letting us sell hats, shirts and bracelets. “Daddy, this is awesome!” he said. Leading up to the day he was excited. Despite having to get up early and get the material over to the school and set it all up, he was excited. “Pushing the message, Dad!”
I remember being in middle school. We called it Junior High School back then and it was just 7th and 8th grade. I was fortunate that I had a few friends and for the most part went through those years OK. I wonder how well I would have fared if I had the added burden of a chronic, life-threatening disease. I wonder how eager I would have been to stand out if I had such differences in a world where being different can be socially deadly. As confident as I was through the upbringing at home and 2 strong parents (especially my Mom) behind me, I think I would have just tried to get by. Not rock the boat. Hope for the best.
Not Jack. Yesterday Beth and I accompanied him to the school to staff a desk where we were to sell bracelets to raise awareness and dollars for NF. He was there in his shirt the physical embodiment of our foundation, putting himself out there once again to all the world for a greater good. He was interacting with kids that were buying his bracelets, thanking them, conversing with others and generally having a good time. “Hi Jack!” I heard dozens of times. Several kids who had purchased t-shirts in previous years were wearing them in support; others were buying them for the first time. One of the staff members suggested we take the basket and go to the dining hall where lots of kids were waiting for the first bell. “Go sell some in there”, he said. So Jack and I went in. I asked if he wanted me to come with him and I could see a hint of trepidation. “Yes, please”. So off we went and we sold a bunch. Shortly after we were done selling and I packed up and left and Jack went to class. Beth was off to work. Another day…another step closer. Later in the afternoon Beth called to say that they wanted us to come back tomorrow and sell some more. We had raised an impressive $276 toward the schools monthly goal! Jack insisted we return. And so today, we returned.
Today we had bracelets, t-shirts and hats again. Today, the kids were told we would be there. Today we raised over $400! We had kids who were buying $1 bracelets for $5 and insisting we keep the change “for Jack”. We had kids bringing in their change to scrape up a buck so they too could wear a bracelet. We had kids by t-shirts for $10 and pay with a $20 and refuse to take the change. “My Mom said to keep it.” It really was amazing today. Probably my most productive hour all month!
The bracelets were going well once again and we were pleased. I asked Jack if we should go back to the dining hall to sell some more. He said “Yea, sure Dad.” He grabbed the bowl and I started to follow him in, you know, to be the big supportive Dad. “Mr. Sales Guy”. He took a few steps and turned to me and said, “I got this Dad, I can do it myself.” He had the bowl of bracelets a few dollars for change and just kept walking. With all the confidence in the world in a new community that he (and we) is hopeful would embrace him and the cause, he walked in and said, “Who wants to buy a bracelet?” It struck me how brave and courageous he is and continues to be in the face of adversity most of us would lie awake at night about. He knows Monday is MRI day. He knows he will likely get good news that his brain tumor is stable. He also knows he could get bad news that it is not stable or a new tumor has grown. He knows this. I know this. But today, that didn’t matter. Today he had a bowl of hope and awareness to share. Today he asked his new community to share the bowl and become part of the hope of Hopewell and they did just that.
A special “shoutout” to Ms. Sosebee, Mr LeMoyne, the staff and faculty at Hopewell Middle School and the PTO for organzing this incredible #HopewellStrong month!
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER
Jake, Beth, Jack, Luke and Grace
Posted on May 9, 2017
A coach who became a friend who became an advocate
It is day 9 of NF Awareness month. As you may know, many kids with NF struggle with core strength issues and other side effects that make it relatively more difficult to play sports. About 6 or 7 years ago, we signed Jack up for baseball. Randomly, he was picked to play on a team and he liked it. His coach was a guy I didn’t know at the time (despite being my neighbor), Marc Fein. Marc was terrific with the kids. Jack was not the best and was not the worst player. He was learning the game. He was having fun and Marc had put together a pretty decent team. Fast forward to the playoffs. Championship game. I know they are six but as we all know it can get pretty intense.
Jack’s team was a run behind. Bases were loaded and there were 2 outs. It was Jack’s turn to bat. Everyone wants to win. I get that. Marc coached to teach and because he is a good man. He is a former D-1 ballplayer himself. As I stood nervously by, watching Jack get ready to bat for the championship I was hoping he would walk or get a single or anything! If he made an out I would deal with that too, after all we had “bigger fish to fry”. I was a terrible player by the way.
It’s coach pitch, so Marc was on the mound. Parents, coaches, kids are all standing at this point. Not sure if Jack felt any tension as he walked up to the plate. Marc was ready to pitch to him. I was about to have a stroke. Anyway, just before he is ready to pitch, he comes off the mound and goes to the plate to have a word with Jack. He put one arm on his back and got down on one knee and said words that I will never know and returned to the mound. “Ok, Jack. Let’s do this and have fun”, he shouted from the mound. “OK”, said Jack from home plate. I was biting my lower lip. I know, ridiculous. Pitch. Swing. Miss. Strike one. Crowd noise increased just a bit. Marc said, “just look at the ball”. It got quiet.
This was before chemo and brain tumors and eye surgeries, although that surgery would be just around the corner. He was a regular kid, playing America’s past time and it was straight out of Norman Rockwell but better. If I had the awareness at the time, I would have realized now that he was a winner no matter what. What I didn’t know then is that NF makes that bat heavier for him. NF makes that ball harder to see and track and hit than others. NF can impact hand-eye coordination. Fact is, he was standing there with just his coach learning, championship be damned. He was amazing. Best of all he was in great hands. His pitcher was his coach. Marc is a Dad himself of some pretty amazing kids and an accomplished ball player in his own right. But right there in that moment it was just Jack and Marc having fun.
So, Marc readies himself and instructs Jack to do the same. Kids are anxiously waiting to hurry to the next base. They want to win. In what seemed like forever, the second pitch came. Pitch. Swing…
HIT!!!! RUN! RUN! Kid on third scores easily to tie the game. NF makes you run slower than most. Jack is no exception. He just needs to make it to first and beat the throw. I swear that day he was running with an anvil in his pants! Kid on second made it to third and the fielder was going for the play at first to get Jack. He threw it which sent the winning run toward home. Jack just needed to get to first before the throw!
Throw. Bounce. SAFE!!! Jack made it to first. Winning run scored. They won the championship. Everyone was happy and jumping around! Except for Marc. He was just standing there obviously happy. I watched him look at Jack and he was smiling and he went and high fived him. It was such a great moment.
Jack had the winning hit that scored two RBI’s to win the championship. He “retired” from baseball.
Career paths took Marc and his family to Dallas where he would be working for NBC as a news anchor. We stayed in touch. He would stay up to date on Jack and was always concerned and supportive. One year he sent some autographed items for our golf auction. Just really great. Interestingly, the family that moved into the Fein house is the Codrington’s. Duane Codrington would go on to film the iconic Jack’s Journey video. Through the past few years, Marc has remained tied to Jack and our family and the battle to fight NF. A few years back he met a local Dallas child with NF and did a profile story on him and his family. He was raising awareness. His experience with Jack had left quite a mark. He wanted to make an impact.
A few weeks back I got a call from Marc and he told me about a baseball tournament he wants to host and use as a fundraiser and awareness raiser for NF. I was astounded but shouldn’t have been. He decided that he could be impactful. Like most people, Marc is in the “unaffected pool”. His children are healthy and none have NF and to my knowledge none of he or Nikki’s family has NF. But you see, that’s just it. This is how we are going to CureNFwithJack. It will happen because of people like Marc. It will happen because of people like you!
If this is not evidence of the kindness, humanity and much needed grace of people that we have had the good fortune to meet, I don’ know what is.
When Marc reads this story it may be the first time he realizes the enormity of his deeds and actions that day. I wish I told him before now, but I hope he reads it today and realizes he is making a difference.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER
Jake, Beth, Jack, Luke and Grace
PS Don’t forget to sign up for the 6th Annual CureNFwithJack Golf Classic on June 6th! https://cnfwj6thannualgolf.planningpod.com/
Posted on February 27, 2017
He stood up and started it all
We knew Jack had NF right after his second birthday. For quite awhile Beth and I were pretty devastated by the news that our boy had a genetic disorder. In fact, when we initially found out we were pretty paralyzed with fear. We were young parents with another child on the way and could barely say much less spell Neurofibromatosis or what to do about it. Initially we shared the news with just family and very close friends. The discussions would create more questions than answers and also a heavy dose of angst on the part of the person hearing the news. What hurt people the most is when they heard “no cure” and “no treatment”. I stopped telling people for a while. We spent much of our time seeking out help and advice and resources. The great Dr. Bruce Korf was the first person to officially diagnose Jack with NF. He was kind, honest and deliberate and despite the fact that he was delivering life-changing, awful news he provided much needed information and encouragement.
Back home in Virginia, Beth and I began to identify doctors and hospitals to monitor Jack and provide care as we continued to learn more about the disorder and how it may impact Jack. We continued to do this and began our foray into a myriad of doctor appointments, new medical terms and a whole bunch of anxiety. Luke was a gift delivered at the right time and we were so fortunate to find out that he did not have NF. We learned about different NF groups and investigated a number of them including the Childrens Tumor Foundation. When we moved to Atlanta we soon came to learn about a local group called the Tumornators made up of 3 brothers Drew, Chad and Ben Leathers and their family and friends. Beth attended one of their fundraising events and came home to tell me how great these people were. I had no idea at the time that we would come to be so close to this family and take up the fight to ENDNF with them.
We continued to live our lives the best way we could but still not knowing so much about what the future held for Jack and our family. He was monitored by doctors in DC and of course here in Atlanta as we watched him go from preK to Kindergarten with Luke always close behind. We learned more about NF and what resources were out there for families both locally and nationally. Beth was always looking to help inform our family on what we could do. We joined in the Racing for Research program through the Childrens Tumor Foundation where we raised money to bring Jack to Daytona along with other kids with NF to meet the drivers and sign the car and watch the 24 Hour in Daytona. In 2011 we took our first trip and among other things that were awesome, we met Ryan Eversley. I had no idea that night and over the next day or two how profound that relationship would become and how much he would do to advance the cause of NF.
Then it happened. That evening in a room full of families, who also had people with NF, Jack got up and stood on his chair. He wasn’t the only one who did it but he may have been the only 6 year old to do it. He stood up and told the room that he had NF. He proceeded to talk about whom he was and why he was there and I was standing off to the side while all this was happening. It may have been all of one or two minutes but it was powerful. He had no fear. He shared with a room full of strangers the most personal thing about himself. I was blown away. For 4 years I felt like a helpless father who could do nothing for his son. Sure, we provided the best medical care we could and I think a pretty good life for a young boy but the NF was still there. We needed to find a cure and we needed to do it for Jack and others.
Not too long after that evening we began CureNFwithJack. 6 years later we have accomplished things I never thought possible. We have hosted over 20 golf events, wine tastings, lemonade stands, garage sales, and so much more. We established a social media presence that has over 3,000 followers and created a great website. We had Coca-Cola, Converse, Anthem Blue Cross Blue Shield, Verizon and many other corporations join our fight! We have engaged with the famous and infamous, he has had random people thank him in person because they met him on Facebook or Twitter and his story has helped them. He has been interviewed on TV and radio. We hosted a medical symposium leading to a published article on how to better help people with NF. We have partnered with Cupids Undie Run for the past 4 years and have had teams in 10-12 cities every year, over 1200 runners on his teams and have raised over $800,000 for medical research through that partnership. We have donated thousands of dollars from CureNFwithJack and will continue to do so. Our goal in 2006 was to raise one million dollars in 10 years; we did it in 5 years.
Jack is now 12. Today he goes in for another MRI on his brain. How’s your Monday? I’ve written about that and the associated anxiety so no need to repeat it here. You get it. The world is very different than it was that night when Jack stood up. We have lost some incredible people we knew because of NF. That’s the awful piece and yet there continues to be hope. 6 more years of research has happened. Clinical trials have been increased. Annette Bakker and her team at CTF continue the fight every day. We are not going to stop. 2017 finds us post unide run and now into our first of many events and golf tournaments and other exciting things to come. We are hopeful. We still need you. Jack still needs you. Six years ago, he stood up on a chair by himself and declared war. Today, while Beth and I will once again be with him. He will lie alone in an MRI machine because in the end it is HIS fight. The single most incredible thing that YOU do by attending an event, or donating to our cause or wearing your CureNFwithJack shirt is that you make it clear that you are with him too. It is an awful thing this NF. I hate it. And be sure it is awful to watch your child go into an MRI machine and hope that it finds nothing but good news. But the beauty and the humanity you provide to this brave young man should never be minimized. He stands alone at the most difficult times because that is what he has been dealt, but he need not look to far to see that he truly is not really alone. Send good thoughts to Jack today.
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