Thursday, October 3, 2013

Day 5 Miles 70: Dedicated to Anna Conger

The ride on Day 5 from Nachville TN to Bardstown KY 70 miles is dedicated to Anna Conger, a 4 year old princess warrior.  Anna fights so hard to overcome this illness, like all these kids do, which truly deserves a lot of respect.  As we cycle and dedicate these rides to all these children, it makes you wonder why these kids get served such a harsh destiny.  Keep fighting little ones and by doing so create your own destiny.


Courtesy of the Matthew and Andrew Akin Foundation

For the dedication video please click: http://youtu.be/a7b073dw1x0

The day started with a deadline: 70 miles by 2pm.  Why you may ask?  Because we are a bunch of crazy people, in case you had not figured that out by now.  A few months back I was asked to be the honoree at the Hope Gala of the Icla Da Silva Foundation (largest bone marrow recruiter for the Be the Match Bone Marrow Registry in the world) for my contribution to the organization.  A great honor I accepted with much appreciation.  The issue was that after accepting the honor the date of the HLH700 Bike Rike, to which I had also committed, was moved from the end of August to the end of September.  Dilemma, I now had two things I truly wanted to commit to at the same time!!  I called Speedy (Dennis) and told him of this problem (as he is always my guest at the Icla Gala and committed to the HLH700) to which he responded that it isn't crazy but just an organizational problem.  And he was right.  So long story short we had to cycle 70 miles by 2pm to then change in tuxedos, jump on a flight from Kentucky to NYC for the Hope Gala, fly back, sleep and saddle up.

As if the time deadline was not enough, the day started with rain and wet roads.  We all departed together but not soon after Bolt and Speedy took off like torpedoes and the three musketeers (Iron Man, Energizer Bunny and Achilles) were left behind in their dust cloud.  It was such a beautiful and nice ride with small little (and not so little) rolling hills and towns.  We passed by Munford TN known for the Battle of The Bridge during the Civil War.  A gentleman at the museum where one of our support members went stated that the true end to the war was at this bridge.  We have seen lots of remembrance of the Civil War in the south but in this town it seemed that the civil war never ended.  Every corner of every street you could see something about the Civil War.  Also some of the people seemed still stuck in time.  Beautiful but scary how history was so present.  Not sure I should have sang the song “New York New York” while cycling through the town.  Them Yankees!

 After some 15 miles Achilles had to retire from the pain in his left knee and left Achilles.  It was disappointing but the pain was rather excruciating despite the Aleve and Hydrocodon-Acetaminophen.   I was drugged up and still pain persisted every time I put pressure on my left leg.  Bolt (Justin) had recommended me in the early stages of the course to find motivation in saying the names of my daughters every time I push one of my legs down, just like he says the names of his two sons Matthew and Andrew, HLH angels (Read www.matthewandandrew.org).  Bolt is an amazing cyclist but his determination and dedication to this ride leaves many of us in shock and awe.  However when you realize that this ride is his ride with his sons, you understand even better the importance of this ride and why he does it to help others.  He is an amazing gentleman who despite his unmeasurable personal loss he and his wife dedicate their time to the other HLH families.  Thank you! 

To come back to my cows and chickens (or whatever the american expression is).  After a few miles I told Iron Man (Sean) and Energizer Bunny (Doug) to go ahead and just leave me behind like road kill because I was holding them up but they insisted on the fact that no man should be left behind and that there was no such thing as the two musketeers.  As a New Yorker I would say that they are a “A bunch of nice guys, you know what I am saying”.  The two musketeers continued their road slowly, steadily with determination, while Achilles Road Kill was picked up by the Canadian support car of Sue and Mike.

There is nothing more disappointing than when your body gives up on your mental dreams but I guess just like with HLH children sometimes the body is not strong enough yet their mind continues to fight.   The key is that when you fall you must always get up.  When failing you must always try again.  And although quitting is easier, perseverance is the only thing that turns dreams into reality.   I will try again tomorrow and the day after and the day after....and eventually next year (yes I said it...next year I am in again).

 Iron Man recovering from a heavy day

Energizer Bunny always happy and joking even after 100 miles.


The rest of the day was not without interesting moments for the 4 cyclists left.  Bolt (Justin) had warned us that dogs do not like cyclists too much and that last year Energizer Bunny (Doug) had a dog nibble at his ankle.  So while rolling over the beautiful hills in Tennessee they discovered that also in Tennessee dogs like cyclists.  From a pit-bull to two little shit-shoes (also better known as Shih Tzu) and than some other ugly untrained dogs all ran after all 4 cyclists to get a piece out of their ankles.  I cannot understand that people do not have electric fences or a regular fence realizing that if their dog bit someone they would have a serious issue.  Dogs!  Just imagine you are cycling 100 miles, you are tired and exhausted and suddenly out of nowhere you here barking and growling.  Imagine a huge pit-bull starts running full speed after you and you have to put it to a run with your bike.... after 100 miles.... tough!  Energizer Bunny (Doug) decided today that he will not run but rather bark back.... that didn't work...running was finally the only option.  Run Forrest!!! Run!!!!

Finally everyone ended at the hotel by 2pm, we rushed and ate, washed up, jumped in tuxedoes, ran like a bunch of penguins to the airport in the middle of nowhere (there were more crop-dusters than passenger planes), jumped on the plane by 3.30pm and flew out to NYC to attend the Hope Gala of the Icla Da Silva Foundation by 6.30pm.  It was the first time to NY for some of us cyclist.  Sean, Dough and Mike had never been to the big apple.  And like Justin said “Thank you for my Make-A-Wish come true!” (Make-A-Wish foundation is a foundation granting wishes to children affected by often fatal illnesses)

We could not believe that the 2pm deadline was attained and although the president of the Icla Da Silva Foundation, my good friend Airam, was very concerned of the honorree not arriving in time, we arrived with 30 minutes delay to the cocktail party.  Incredible!!!!  The organizational skills of the Speedy organization are impressive!!  But where there is a will there is always a way.  Note that the cost of this trip was not covered with the donations of any of the foundations of the HLH700 or Icla Da Silva Foundation, we are all committed in making certain that every dollar you donate goes to the cause and not to tuxedoes and airplane tickets.  We are committed to supporting our HLH and Bone Marrow families and bare the entire cost of the HLH700 cycling trip as well as the Icla Da Silva trip ourselves because that is the right thing to do.  So rest assured your money goes to the many children that need it, and we are committed to making certain it does.

Why would the HLH700, Akin Foundation, HLH Center of Excellence and the entire team support the Icla Da Silva foundation efforts? HLH and Bone Marrow transplants are 100% linked because the only way to control HLH is by bone marrow transplant, which without a donor is impossible.  Without donors these patients would never get a second chance to life.  Miabelle like many would have died if we did not find a donor.  The Akin Foundation supports the HLH Center of Excellence which focuses on HLH awareness, research and family support, whereas the Icla Da Silva Foundation focuses on recruitment of donors and patient-family support.  Both organizations are linked at their core and essential to the survival of our little HLH warriors.

The Hope Gala was amazing and among the best Gala’s I attended in my Gala career, which is long and sometimes painful.  The Ritz-Carlton was an amazing setting, the crowd was interesting and pleasant but the high moment of the night, the most emotional moment of my year, was the encounter of a donor with the patient he saved.  Many of you reading this blog are certainly familiar with death of a loved one, which is painful, but when you see how a young man saves the life of a little girl by becoming a donor to a complete stranger you realize that heroes do exist.  The moment of them meeting for the first time at the gala was magical, baffling, stunning, emotional and most of all it creates hope that some day no kids or adults will die because they could not find a donor.  Thank you for sharing this moment with us!!!

 Iron Man (I wish I had his strength)

 Energizer Bunny (Always running at full speed)

 Bob, he eternalizes our experience.

Don Bolt.


It was so much fun to get off them saddles and enjoy a night of laughter and tears with my teammates and friends, my family, my NY friends and my wife who was absolutely Stunning... and I mean Stunning with a capital S.  My teammates had to drag me out of the gala like a little kid kicking and screaming being dragged out of a toy store... that stunning!  Thank you all for coming to the Hope Gala of the Icla Da Silva Foundation in support of awareness and registration of donors, in the support of creating hope for those who deserve a second chance to life.  Hope lives thanks to all you unsung heroes, my friends, my family and all the strangers who donated!!

At the end of the Gala we flew back to Kentucky (please don’t ask me where in Kentucky because it was truly in the middle of nowhere).  We arrived around 1.30am in the morning (as the flight takes about 2 hours including boarding).  Everyone was so tired but seemed to have had a lot of fun.  And despite the early morning bed time, we will get up and proceed with 94 miles of cycling!!!!

We will prevail!

People, rightfully so, told me that doing the HLH700 was nuts, people said that attending a Gala for Hope during the ride was impossible and people said we would be crazy to do it all.  Well them people were right: we are crazy, it is impossible and doing the HLH700 is nuts.  But what them people underestimated is that a bunch of crazy yet motivated minds with the inherent desire to persevere in the support of HLH and Bone Marrow will do everything humanly possible to support life and hope for those to come.

I hope some of you blog readers, who have not yet, will join us in this battle.  Spread the word of HLH through this blog, raise money for the HLH Center of Excellence (www.matthewandandrew.org), support Bone Marrow families by donating to the Icla Da Silva Foundation for all those who need a bone marrow transplant and more importantly become a donor by contacting the Icla Da Silva Foundation at www.icla.org.

Remember you are the hope they need!


Gala Speech:

“Let me start by thanking Airam Da Silva, the board of trustees and the employees of the foundation for this great honor.  I also want to thank my friends, family and all of you for attending tonight’s gala, and I want to give a special thanks to Dennis, Ann, Sean, Mike and Justin, who have flown in with me today all the way from Kentucky to show their support.  Finally I would like to thank my fabulous wife who without her I would not have been able to support the Icla Foundation nor would we have been able to save our child.  She was and is my partner through good and bad.  Thank you all.

Last year I stood before you and told the story of our daughter Miabelle’s difficult journey back to health following her diagnosis of a rare and often fatal disease called Hemophagocitic Lymphohystiocytosis or HLH.  Tonight I’d like to take the time to give thanks to all of those who helped our family face the unthinkable and find the strength to carry on.

When I think back on what Miabelle went through during her battle, I am often awestruck at how incredibly strong and resilient a baby of 11 months can be.  While my wife and I were coming undone she remained a happy, silly, giggly girl.  Unphased by the chemotherapy, or the weekly lumbar punctures; the masked strangers or the needles; the 16 medications or the central lines pertruding from her chest; the solitary confinement or the absence of her twin; the 30+ surgeries or the countless beeping machines attached to her.  Miabelle was simply Miabelle.  But she was our thoughts, our dreams, our prayers, our life, our reason, our everything.

While I would like to think that my wife and I were ourselves throughout the journey, our family and friends can attest to the fact that we’ve all been scarred.  For Miabelle’s struggles were not Miabelle’s, they were ours, and our loved ones, our friends, our coworkers, our clients, our communities.  Anyone and everyone we came in contact with during that 2 year struggle were impacted.  And everyone of them took our story and shouted it out from the rooftops.  Save Miabelle! 

My wife jokes that God’s inbox must have been full from all the prayers.  During the campaign to find her match some 15,000 new donors were registered.  That is not because of me or my wife, it’s because of people like you.  Strangers who heard the sound of our despair and said “there but for the grace of God, go I.” 

Their stories are too many to tell.  They were the colleagues who adopted our family and became our Food Angels.  They were the friends and friends of friends who helped us move.  They were the doctors and nurses and counselors and therapists who were by our side every step of the way. 

Recently, my wife came across a link to our blog, posted in Belgium by a stranger with thousands and thousands of followers following the airing of our family story on the Belgian news.  Then there’s the story of the stranger seated next to Miabelle’s godmother flying in from New York who listened to her tell our tale of woe and posted it on her blog of 50,000 followers.  Or the leasing agent in Cincinnati who upon learning what brought our family to Ohio, organized a Bone Marrow Donor Registration Drive on her University campus.  The list goes on and on.

The honor tonight goes to all of them.  They gave us back the hope we nearly lost.  And together with Airam and The Icla da Silva Foundation, they are the true heroes of the night.  The unsung heroes who sounded the alarms, beet the drums, rang the bells and screamed from the mountain tops – Save Miabelle.  And thanks to you and all of the unsung heroes of the Icla da Silva Foundation – hope lives.

And remember when making your donation tonight, the Icla Da Silva Foundation is Hope; for everything else there is your mastercard!  Thank you.”


 Sleepy sleep,
Papa




1 comment: