CureNFwithJack

Dewey and a Dad’s Despair

“Dewey…Dewey…Dewey”.  Long before the chant of “Mookie”, there was “Dewey”. If you’re older than maybe 35 and from Boston then you know who Dewey is. Like Madonna, Prince and others with recognizable one-word names, Dwight Michael Evans roamed the right field in Fenway Park for my Boston Red Sox from 1972 until 1991.  He won 8 Gold Gloves and 2 Silver Slugger awards and was an All Star 3 times. Like many kids in Boston, I loved Dwight Evans.  My first game was with a bunch of cub scouts and we sat in the upper deck of right field and I remember watching him the most because he was the closest player to us. He was fun to watch and that is a great memory.

He also was dealing with tremendous adversity off the field.  You see, Dwight Evans was also and “NF Dad” and he was one back when there was not too much out there about Neurofibromatosis. Looking at old articles this morning about his children back then make me cringe when the author mistakenly refers to NF as “Elephant Mans disease”. Two of three of his children have NF and Justin, 41 years young, died on Easter Sunday.  He died because he had NF, period.  NF truly is a monster. Imagine that in spite of all your talents and money and fame and advocacy, you still could not hold off the monster.  Goodness knows that he and his wife Susan have done quite a bit of work in the NF community and I hope in the wake of this terrible outcome that they will continue to be a force for their other son Timothy and all of the people who live with NF.  I can’t understand his pain and frustration and sadness today.  As a Dad, you want to do all you can to help protect your children and I am sure Dwight did just that…but it was not enough.  NF demanded more from him and from us and we have not been able to deliver.  YET.  There is a tremendous hope on the horizon for people with NF and I hope that the Evans family will take pride in knowing that their efforts will help others in the future.  We are now seeing breakthroughs in clinical trials that are producing new treatments.  Very soon the FDA will be approving the very first drug to treat NF.  When Dwight was in right field those many years ago pondering what the hell was going on with his boys and what could be done, I am sure he was left feeling helpless many times.  Today, through is unimaginable pain, I hope he and Susan will soon take some solace in the fact that their work for their boys will help others. 

This entire “NF thing” seemingly has been interwoven into my life longer than I even realized.  Many of you know that NF Awareness Day is on May 17th and that coincidentally, Beth and I were married on May 17th.  It is why we call Jack “one in a million”.  The odds of two non-NF people getting married on that day to then go on and have a child with NF is something like 1.09 MILLION to 1.  Anyway, I digress. Even before Beth and I were married we ran into Dwight Evans.  The story goes like this:

We were dating and I think we were still doing the “long distance relationship” deal.  Flights to and from DC and Boston every other weekend.  It was the best of times.  We had money, time and no kids and we loved every minute of it. One night we decided to go to Maggiano’s over near the theater district in Boston.  We often liked to “belly up” to the bar have a few drinks and maybe an appetizer. As we walked into the relatively quiet restaurant, I sat at the bar and did the usual “anyone else from Medford in here” scan.  Immediately to my left at a table was Dwight Frickin Evans!!!!  He was with his wife and another couple.  I was blown away.  He was right there.  I turned to Beth and told her who it was and why I was so freaked out.  I told her about him and the Red Sox of my youth and the catch in Game 6 of the World Series.  We went about our business and I would occasionally glance over remembering that day at Fenway in my Cub Scout uniform.  At some point, Beth excused herself and said she would be right back.  Just about that time, I feel a presence like a guy at the bar who needed a drink. I turn and it is HIM!  I looked at him and he said “Hello”.  I said “Hello, Mr. Evans, my name is Jake Burke and I just want to quickly thank you for so many great childhood memories.”  We shook hands and he put one hand on my shoulder, looked right at me and said, “Jake, thanks for saying that!” We had a few more seconds of small talk and then he did the unthinkable. He thought that I might have been alone at the bar so he invited me over to JOIN him and Susan for dinner at their table.  I swear to God, I thought I was going to fall off my stool.  The 12-year-old Cub Scout inside of me screamed YESSSSSSSSS!! THANKS DEWEY!  Can I have 2 Fenway Franks?” The 34-year-old man, politely said “Thanks but I am waiting for my fiance and we are just hanging out.”  He looked around and not seeing her, he said, “are you making that up?”  I laughed and said, “No, she will be right back.”  “Then bring her over too, Jake”, he said. Just then Beth came over, looking amazing like she always does and I introduced Dwight and Beth.  “Hello, nice to meet you”, he said.  I told her Dwight was kind enough to invite us to the table (my back to him, my face to her, my EYES WIDE OPEN), but I said we didn’t want to intrude on his night.  He graciously shook our hands and said thank you again and headed back over to his table.  All of this happened in about 3-4 minutes some 17 years ago. Of course, at that time I did not know Dwight had children with NF and of course I would never imagine that I would too.  I have thought many times over the years why Beth and I chose that restaurant on that night and met THAT famous Boston athlete.  It was a very cool night and one I will never forget and know that he and I are forever tied together now by this terrible disorder that impacts our boys and so many others.

I hope Dwight knows he did the best he could to help his boys, my boy and others. I have an imaginary conversation time and again with myself sitting at a bar with “adult Jack” and we are sipping a beer and he asks me, “Dad, what did YOU do?”  And my fantastical response is “Everything I could.”  I hope Dwight knows that he did everything he could and to paraphrase a great American:  “I pray that our Heavenly Father may assuage the anguish of your bereavement, and leave you only the cherished memory of the loved and lost…”- Abraham Lincoln

So, with all this in mind and as I writing this today I was reminded by many of you we must keep fighting and we will.  We always will. THIS MONDAY in Washington DC, CureNFwithJack is hosting the 7th annual DC Golf Tournament.  It’s not too late yet to sign up or donate.  You can do so by clicking on this link: http://Day4Heroes.givesmart.com

Rest in Peace Justin Evans, thank you for your life and for your impact. Peace to you Dwight, Susan, Kirsten and Timothy as you navigate forward.

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

Jake, Beth, Jack, Luke and Grace

Humanity, Friendship and Progress- The Greatest Gifts

For the last 8 years or so, CureNFwithJack has been raising dollars and awareness toward the goal of finding and effective treatment or cure for NF.  Of course, my motivation is self-serving.  I want to save Jack’s life and make it better.  However, it’s never been just about Jack.  It has and will always be about benefitting the community.  These past few years have been challenging but also very rewarding.  We’ve had MRI’s, chemo, tumors, surgeries, sleepless nights, family strife, braces, IEP meetings and the list can go on.  However, we have had yard sales, golf tournaments, fishing tournaments, Undie Runs, jewelry parties, birthday benefit parties, straight donations and other wonderfully creative ways of raising awareness and dollars.  These events and the people who organize, participate, volunteer, share and donate are responsible for raising close to TWO MILLION DOLLARS through CureNFwithJack.  Think about that.  Many of you do this because of Jack or a relationship that ties you to him or to us and we are eternally grateful.  Many of you may not be 100% sure where those dollars you entrust to me goes but you contribute because you trust we will do our best with those dollars.  Your trust is well placed and Beth and I are always grateful for that trust.  Among the things that we ahve supported through our partnership with the Children’s Tumor Foudation is the Synodos project.  I read this today on a Facebook post from the President of CTF: 

Our signature collaborative science model Synodos delivers again!  Studying low grade glioma seemed impossible because there were not enough samples…. we were told the Children’s Tumor Foundation loves impossible problems…. we launched Synodos- an invitation to fix the impossible problem and now, 2 years later: 2 synodos groups (one led by Dr.’s Michael Fisher and David Gutmann) and one by Dr. Antonio Iavarone; gathered hundreds of samples from all over the world (NF has no borders!} discovered new mechanisms, new researchers joined the field…. THIS IS PROGRESS… I am beyond proud…. and the best part; there are more discoveries…. more options. Thanks Lauree and Jim Bob to kick off SYNODOS for LGG. Thanks Flashes of hope, CureNFwithJack and all those that made the Moffett match a reality 3 years ago. You helped making the progress we need to END NF!
But…. 
Now we need to fundraise Fast to translate these new findings in treatments for our beloved patients
We can do it! Together!

Can you believe that?  We were specifically mentioned in this amazing update about the progress toward a cure.  THIS IS YOU!!  

In His Shoes

It’s not too often that I reference a previous blog posting to provide context for the next but in this case I am doing just that.  It’s not required reading but I think if you stop and click on Camp Courage you will thank me later.  

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What many of you already know is that Neurofibromatosis (NF) is a very complex genetic disorder that manifests itself in a myriad of ways.  Jack has a brain tumor, a plexiform neurofibroma in his left orbital area, and a NEWLY discovered plexiform neurofibroma in his right orbital area.  Like many others, Jack suffers from low muscle tone and some gross motor skill challenges.  Despite all of that and through his courage and determination, Jack persists and lives his life.  We won’t talk about the countless stares and questions that he endures because through his grace and skill he manages that well too.  

What we have been concerned with for the past 8 months or so is Jack’s fatigue.  As I said, NF is complex and lead to many different maladies.  We couldn’t figure out why he was suffering so and was so lethargic almost daily.  You know us, we don’t sit idly by and “wonder”.  Beth and I seek answers, good or bad. We went to see a pediatric orthopaedic.  We visited his NF doctors and spoke to others.  We ordered more MRI’s and were now exploring the previously unknown lower part of his body for signs of tumor growth.  That anxiety is always fun.  We were seeking answers and were not finding them.  His MRI’s (thankfully) came back mostly negative.  He has a few smaller tumors but nothing that would be causing his fatigue and pain when he walks.  

Imagine.  13 years old and getting out of bed to go to middle school and your feet are in such pain and you don’t know why.  

Thankfully, his mother is persistent and just won’t give up on helping our boy.  Days would turn into weeks and he would complain on just SOME days because that is who he is.  We knew better.  He was hurting and we were OVERJOYED that it wasn’t some spinal column tumor or worse but we were frustrated because we didn’t know what it was and fearful of what we didn’t know was coming.  Showing itself day after day, week after week was the pain and we couldn’t figure it out. Shamefully, I started to wonder if it was psychosomatic or something.  It wasn’t.  It isn’t.  I should know this.  I couldn’t walk 10 feet in his shoes.

2 weeks ago, the Childrens Tumor Foundation had their annual gala in NYC and was celebrating 40 years.  Beth and Jack went to the event and to spend some time in the city. They walked around a bit, took in some sights, grabbed some great food and spent some quality time together.  They had a great day.  The next morning he could barely walk.  He was in pain that Beth had never seen in him before.  She was really upset.  He was really upset and we really needed some answers. 

Finally, it was time to return to the orthopaedic doctor and see what is going on. We were desperate to provide relief to Jack.  Beth was spending hours and weeks to find anything she could.  Did I tell you she is “wicked smaht”?  Then she found something that described his symptoms but we weren’t sure. She mentioned that we would go see the doctor and get a new X-Ray on his feet and see if it is something called Tarsal Coalition.  Of course, I looked it up and it seemed that the symptoms were similar.  We went to the doctor and after Jack described his pain and symptoms we went upstairs for the X-ray and in about 20 minutes returned to the doctor.  

He came into the office somewhat stoically and said, “Good news, bad news.  Bad news is that Jack has Tarsal Coalition.” I looked at Beth and our jaws dropped.  “We thought that’s what it was”, Beth said. All this happens in a split moment and his look at us was briefly, an “I’m calling BS” look.  Then he saw Beth immediately reach into her purse for the printed out pages (all marked up as a lawyer would) describing Tarsal.  We were so relieved to have an answer even it meant that there was something coming at us in about 10 seconds.  Jack was listening intently as he always does.  I just looked at his feet, interrupted by the doctor’s next comments.  

He said the “Good news is that we can FIX this!”  This is a phrase that people with NF and the complications that come with it do not hear very much.  I could see the tension slowly leave Beth’s body. Jack was still listening.  The doctor went to get a model of the human foot and went onto explain what Beth already knew and more importantly how he will fix it.  “Jack will endure another 2 surgeries, one on each foot”. My ears were on the doctor; my eyes were on my boy. I don’t know how he does it.  He listened, we caught eyes for a second and I was challenged once again to not lose it.  The doctor went onto explain that this surgery will take about 3 months recovery for each foot and casts, and hospital and scooters, etc. I was listening to the man describe the “fix” and was overwhelmed that there is a solution but so sad for Jack and what lay ahead. As his Uncle Danny has said many times, toughest kid I know who needs to catch a friggin’ break. 

As always, Jack had questions.  Important questions.  Relevant questions. The doctor answered each one and was honest. He told Jack that this will involve a little bit of pain that can overwhelm some people and then he paused and said, “Not you, though. It’s going to hurt but relative to what I KNOW you have been through, you will be fine.  Mom and Dad, I mean that”! Then he fist pumped Jack and we began to discuss other details. 

I looked at his shoes covering those feet and I realized again that I couldn’t walk in them for TEN FEET.  I thought about the journey those feet have been on in just 13 years.  I couldn’t do a day in his shoes.  I think of the countless walks to doctor appointments, MRI’s, X-RAYS, PT appointments and know I can’t walk in his shoes.  I think of the number of rooms those feet and those shoes walk into and are met with curiosity or just plain staring and how those shoes and those feet carry him right past it all.  I think of those shoes as he walks around the golf events, genuinely thanking participants, volunteers, and sponsors alike.  I think of the pain in those shoes and wonder how sometimes one foot goes in front of the other. I think of those shoes and how that maybe they wished they could run fast or climb high, but cannot. I think of what he must have endured this summer at Camp Courage just to be one of the Boy Scouts like his friends.  Jack’s Journey, as we have called it, begins every day with those feet and those shoes and even if I was man enough to take on his burden, I cannot.  It reminds me once again that it is uniquely his and all I can do is walk beside him or carry him when he asks.  

It’s crazy isn’t it?  As parents of a child with NF, you leave the doctors office and he tells you your son is having surgery again and you have a sense of relief?  Of course the relief is well founded but I HATE that this is what he must battle.  Many times people have said over the years, “How do you do it, Jake?  How do you guys do it?” Well, what I don’t say is the truth of the matter.  He does it. He leads us all with his valor and bravery.  While relatively speaking, this surgery is not as major as his brain surgery, the recovery and therapy is long and intense.  He will be challenged in different ways but in the end he will be better and will get through this too.

Surgery is scheduled for Monday, November 12th in that we do not want to disturb his summer.  Of course we will keep you up to date as always.  I can’t walk in his shoes but I may be his shoes for a while and that is OK by me.  Thanks as always for the support.

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

Jake, Beth, Jack, Luke and Grace

Camp Courage

Last week I accompanied Jack on his first over night Boy Scout camp.  If you know me AT ALL, my idea of camping is walking barefoot through a suite at the Marriott. It is just not my thing.  However, Jack had been talking about it for weeks and his buddies were going too so HE was going.  As we led up to the event, Beth and I thought it would be good for me to go along and make sure he was OK. Initially, I balked thinking he has been through so much that camp should be fine. I know a few other Dad’s were going with their kids but I didn’t want to be cramp his style.  In the end, we decided that I would go for a few days and then leave because our good friend Brian Riggins (who Jack loves and is a Scout Leader) was coming up mid-week.

The big talk of the camping trip was the white water rafting adventure.  On Day 4 we would head down the Nantahala River for some fun. For those of you who don’t know, the Boy Scouts of America (BSA) are deadly serious about safety and insuring that you’re all good to go.  Prior to the trip I needed to get 3 different medical forms and waivers filled out and one signed by my physician.  Jack did too.  We also had a waiver to fill out regarding the white water trip.  We did and no big deal.

Sunday afternoon I drove the 2 hours with Jack and his buddies to camp. It was hot.  About a mile outside of camp, I noticed LOTS of debris, leaves, branches, bigger limbs strewn all over the place.  It looked like one heck of a storm came through.  I thought to myself that I wouldn’t want to be in a damn tent through something like that!  We arrived to check in and lunch and I asked one of the counselors about the aforementioned debris field. “Oh, yeah, he says with a curious smile, we had a 138 mile winds come through camp last night.  Lost 68 trees!” “What?” I said.  “Yeah, it was scary but kinda cool”, as he nonchalantly walked away.

Shortly after that exchange we started to learn more about our week, where we would be camping (site 16) and our accommodations.  We were told that we would walk to camp, pick our tents and then get ready for the swim test.  The swim test would be held in the lake and in order to do any water activities you have to pass the test.  Cool.

So we get our daypacks and start walking to the site.  It is a little over a half-mile away but we are in the Georgia Mountains so it was up hill.  

One of the things most people do not realize is the toll NF can take on their core strength and endurance.  I remember visiting Jack’s geneticist many years back and he said that people who have NF can often struggle with many seemingly normal physical tasks and the reason for this is the lack of core strength.  He essentially told us that day that someone with NF is exerting SIX TIMES the energy of the person they are walking beside…just walking.

Well, didn’t that hit me like a ton of bricks in that moment?  We did our best to keep up with the pack but we fell a bit behind.  Despite that we kept moving.  “You good Jack?”  “Yea, Dad.”  We got to camp 16 and were assigned our accommodations.  Heavy, green, canvas tents with a 2 cots inside was where I would be sleeping.  3 or 4 HUGE daddy long leg spiders welcomed us immediately.  Nice. As we began to get our gear into my tent and then Jack’s into his tent, it was announced that we would now be walking to the lake for the swim test and we should suit up.

At the lakeside we are told that the swim test requires 3 25-yard laps of “forward stroke”.  You could use freestyle, breast, butterfly or side.  After those three laps you need to complete a 25-yard backstroke and then float for 1 minute on your back.   I don’t swim much but I didn’t think too much of it.  We got in 2 lines and Jack went one way with his buddies and I went the other.  I watched some other boys exit the lake after their test was completed.  Nothing really alarmed me too much.  Slowly but surely, some of the adults were not looking so hot coming out.  A couple of them walked by us and muttered, “good luck” or “that sucked”.   I was next.

As instructed, I jumped in and began my laps.  25 yards, no problem but I was more tired than I expected.  Next 25 and I couldn’t believe that I was feeling so gassed.  The entire time I was thinking about Jack and how he was doing and I started to panic.  If he needs to work SIX times as hard this has to be killing him.  Focus.

I’m now into the 3rd lap and I’ve resorted to the sidestroke so as to keep me alive.  I could not believe how hard this was.  The lake water felt like maple syrup.  I knew I needed to get on my back and mercifully I made it through the 75 yards and onto the last 25 on my back, praying I didn’t drown.  All the while I was wondering about Jack.  I floated and I finished and I began to exit the lake.  As I climbed the ladder and I walked to the beach to look for Jack.  I sat down next to him trying to understand why I thought my head would explode and asked him how he did.  My headache got worse.  He tried his hardest but did not pass.  I said I was so sorry.  The lifeguard then came over to high five Jack and let him know he could retest.  

Test over.  We walked back to camp to get ready for dinner. He wasn’t saying much. I still had the weird headache.  He was assigned waiter duty and we had our first meal.  The kids hung out at the trading post for a while and then we had opening ceremonies that went until about 10 PM.  We then walked back to camp in the dark through the woods.   What I clearly and quickly remembered is that in addition to the fatigue that NF gave Jack it also messes with his balance.  Walking through dimly lit woods does not help with that and all I could think about was how much he must have been struggling to keep up to his friends.  I was tired and I don’t have NF.  After a bit, he started to fall back near me as the boys kept moving forward to camp.  I walked with him and we started to talk about the day.  He grabbed my hand as we walked and I soon was overwhelmed.  Jack doesn’t hold my hand too much anymore.  If I try to hold his he often lets go right away.  Not this time.  We walked together.  I wasn’t sure who was holding whom. I thought he was so brave.

We got back and he was done.  The other boys were still excited about the day and were planning on staying up late.  He didn’t have the energy and he asked to stay with me because I was solo.  I complied and we began to go to sleep.  “Daddy, that swim test was hard but I think I want to try again.  Was it hard for you too?” I told Jack it almost killed me and he laughed having no idea how serious I was.  I said we would decide tomorrow because we had a few days until rafting.

Reveille blown on a trumpet at 6 AM sucks.  Not too much sleep but day 2 and the pursuit of merit badges began.  He went to his classes and I snuck in some emails.  I looked at his requirements for “Mountain Man” class and it said FIVE MILE HIKE!  Nope.  I went to the class and pulled the leader aside and explained what was up and those 5 miles wasn’t happening. He was cool about it and indicated Jack will do all the other requirements, etc.  At lunch he sat with the boys and I watched from a distance how much he was laughing and having fun with the kids.  It was really great.  Before afternoon classes I asked about the retest and he said maybe tomorrow he would try.  I reminded him that he didn’t have to do it and that I have an alternative plan other than rafting.  He told me he really wants to go.  

Day three came and he woke up saying he wanted to swim test again.  After classes we went down for the afternoon swim and tried to get him a retest.  Jack’s friend Jack Flynn was there and was thrilled that Jack was going to retest. “I really want you to go with us”, he said.  He stayed with me to cheer on Jack.  The lifeguard took Jack and asked that we stay put so as not to distract the process. I wanted to be IN THE WATER with him but I agreed to stay back.  He was about 50 yards away so I couldn’t see.  Jack Flynn kept asking what I thought and I said the longer he is in the water the better.  Shortly after, I saw the lifeguard help him out of the lake. He slowly walked over and said he didn’t pass.  Before I could respond, his friend Jack Flynn said that it was very brave of him to try again and he was sorry.  I was astounded by the comment and the empathy and thought to myself that my boy has really great friends.  Jack hid his sadness and his friend took off for the “deeper” part of the lake.  Jack was stuck with me and I was out of ideas.  I asked him to swim with me in the lake and said he didn’t want to.  I asked again and he obliged.  I asked him what happened.

The first test just two days ago he swam just the first 25 yards.  The second test he swam 65 yards but couldn’t do much more.  He thought he was going to drown. “Jack, I said, Let me tell you a secret.  If roles were reversed and I didn’t pass the test but you did I was never going to retest.  I was too scared and I was going to tell you that you would go with Mr. Riggins.” I told him how brave he was and that I wasn’t kidding.  I hugged him and said we have other plans for tomorrow.  We swam for a while and I thought how lucky I was to be his father.  He tries so hard to be one of the guys and tries harder than anyone I know.

Wednesday came and the troop went rafting.  I got Jack signed up for an additional merit badge and we went to the rifle range to shoot some guns.  He loved that and was a good sport all day.  I was happy for the extra time we got but hated the reason.  At one point we were sitting near another boy at the trading post.  Jack walked by him and I was out of earshot but could see the boy talking to Jack.  He and Jack engaged for a minute or two and I was anxious to know the conversation topic. I knew what it was before he told me.  I often ask myself how I would handle the stares and the whispers and the questions about my appearance when I was just 13 and I don’t know.  What I do know is that I hope that I would be as brave, open and honest as Jack is, but I doubt it.  Anyway, Jack told me that the boy asked about his eye and why it looked that way. He told the boy he had NF and that it was a tumor.  The boy said he was sorry and that he hoped he would get better.  “He told me his Dad has a tumor too, Dad and I felt bad.”  I told him he was the coolest kid on the planet and he looked at me and smirked.

Looming ahead was that he knew I was leaving that evening and I could sense that bothered him.  I think missing out on rafting and 3 days of rain and fatigue caught him.  He would never ask to leave with me but I needed to ask him.  I did. “I think I want to go home.”  I was so glad I asked.  If you asked me before camp what my response would have been it would have been the opposite.  Stupid thoughts like he needs to stay or suck it up would have likely prevailed.  I was happy I asked.

I told his troop leaders, who are great guys and who give so much of themselves, that Jack was going to leave. They understood. Keith Pry, the Scoutmaster, pulled Jack aside to tell him how proud he was of his efforts and that he was happy he came to camp.  We drove home with his buddy Drew arriving about 10 PM.  I asked Jack if he was tired and he said yes.  I asked if he was too tired to see Jurassic Park at 10:30 as a special treat.  “Really?  We can do that?”  I said, “Sure!”

It was the least I could do for a boy who taught me (again) how to be a better man, a better father and human.  Jack taught me more lessons in 3 days then any one else I have ever met and he is just 13.  I am lucky to have him and so is the world.  For almost 72 hours straight in innumerable ways, Jack showed me one of the greatest virtues anyone can ever have and that is COURAGE.

He will need to tap into that as his journey with NF continues.  Please stay with Jack folks.  Trust me, you get way more out of it than you can ever put in.

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

Jake, Beth, Jack, Luke and Grace

HERE IS THE LINK BACK TO THE POST ABOUT HIS SURGERY:  http://www.curenfwithjack.com/content/his-shoes-0