Thursday, November 3, 2016

Priorities

In 2016, our government gave $26.4 million for clinical trials in childhood cancer.  That is 2% of the number we give to adult cancers.

At the same time, we gave $170 million for the distribution of free condoms in central Africa.


I was told that this was comparing apples to oranges.  So I looked it up.  We gave $440 million in subsidies to U.S. apple and orange growers.

We prove our priorities with our wallets.

Tuesday, November 1, 2016

Lots of Money for Trump and Hillary

Those running for president this year have spent $1 billion dollars on their campaigns.
If you total the other national elections this year, the total reaches $5 billion.  That is $13.7 million spent every day.  I guess it takes that much money to talk about all the hot mikes, lost emails, lying, cheating, and tax evasion. 
I saw that number this morning, and it struck me.  $13.7 million a day. That number is exactly HALF of the ANNUAL amount our government budgets for childhood cancer clinical trials.  Oddly, that is a topic no candidate has mentioned. 
Childhood cancer is the #1 disease killer of children in this country. Every year 15,780 children are diagnosed. That is a school bus full of children every single day. 20% of those children will die of cancer within five years, with another 16% dying after the fifth year.  Of the survivors, 78% will suffer life-long debilitating complications from the treatments, most dying pre-maturely.  Only 22% survive to live a full and healthy life.  
These numbers have remained unchanged for three decades.  In spite of this, our government only budgets 4% of its cancer research funds for childhood cancers. Our "public servants" find this acceptable. Those campaigning to be our new "public servants" seem to agree.  I do not. 
Now would be the logical place in this blog for me to insert support for a particular candidate. Unfortunately, there is not a single candidate in a national election willing to tackle this issue. I guess they are too busy fighting for people with votes and $13.7 million a day in contributions. Children have neither. 
Therefore it is up to the rest of us.  We must fight for our children. There is a cure, and we must find it.  There are many ways you can help.  If you don't know how, one of the best forums is People Against Childhood Cancer. 

We must to fight for our children.  And we need to fight to win. 

Saturday, October 29, 2016

Jim Gant - American Spartan

I meet two incredible people this week.  Jim Gant and Ann Scott Tyson. Jim was a Major in the Green Beret, serving in Afghanistan. Ann is a Washington Post war correspondent, and wrote the book, "American Spartan".  It is the story of their experience, while embedded in an Afghan village.  It is an amazing story, and you absolutely need to buy this book and read it. 
So why am I mentioning it here, on a blog about childhood cancer?
It is because Jim Gant is a decorated war hero, and fought incredible battles against the Taliban.  Those fights were successful, but he also faced enemies more powerful that the Taliban.  Those enemies were his leaders.  It was bureaucracy, money and politics that too often control the U.S. military.  In the end, the very officials that sent him into Afghanistan betrayed him.  
In the war on childhood cancer, our children are the warriors in every battle.  However the same institutions designed to support them can often become their primary enemy.
My son was denied access to needed treatments on more than one occasion.  The argument from was that it was better to let him die, than to attempt a treatment that might kill him.  It is one of the ugly unspoken truths in childhood cancer.  The explanation is money. 
The companies funding clinical trials are attempting to get FDA approval for their drugs. Having a child die on a clinical trial could potentially slow down that approval process.  So access to the trials is limited to only the "healthiest" sick people. Their attitude is "why should we risk our drug approval on a child who might die either way?" They close the door, eliminating hope for any options. 
Pharmaceutical companies say it is not their fault. FDA approval of a single drug can take several years, at an average cost of $1.2 billion.  Allowing high-risk kids into the trials could result in delays or denials of these critical drugs. 
The FDA supports this policy. They claim they are "protecting" us. So how are they protecting the children that die, waiting on the approval? 
Children are denied access to clinical trials during the first two phases of the trial. Those phases take an average of seven years. You would never be happy with a seven-year-old phone or computer.  But the best we can offer our children is seven-year-old medicine. In fact, the majority of my son's treatments were outdated chemotherapies from the 1970's. 
Our government spends $26.4 million a year on childhood cancer research.  That number is less than 4% of the amount spent on adult cancers.  As a result, cancer remains the #1 disease killer of children in this country.  
Our government, in many ways, is pretending to fight a war. We send our young men and women into Afghanistan, but the leadership fails to implement a clear plan to win.   Bureaucracy, money, and politics cloud every goal. 

In the war on childhood cancer, we are doing the same to our children.

Wednesday, September 21, 2016

Gavin Rowe


September is Childhood Cancer Awareness Month.

Most people are aware of the brutal treatments used on cancer patients.  However many are not aware of the long term devastating effects of those treatments on the young developing bodies.  Many are not aware that 78% of childhood cancer "survivors" suffer life long problems, primarily relapses, secondary cancers, heart disease, and liver disease. 

Gavin Rowe is just on of the many stories.  

Gavin was diagnosed with cancer at age three.  He beat it, and is listed in the statistics of survivors.  Then he relapsed, and beat it again.  Now, eleven years old, Gavin has relapsed again.  

Gavin is strong, and continues to fight, in spite of multiple replaces, and leukemia now spreading into his central nervous system.  Like my son Tyler, Gavin continues to fight to win.

Currently Gavin is pursuing an new treatment option at Childrens Hospital of Philadelphia.  I encourage you to go to the family's site, lend your support, and let Gavin know he is in your thoughts and prayers.

My son also had leukemia.  It also spread into his central nervous system. many people also gave up on him.  He is now eight year in remission, healthy, married, and cancer free.  I have no doubt that Gavin will have the same outcome.  He just needs us all to keep fighting. 

To learn more about Gavin Rowe, and help his family though their financial needs, please go to their Go Fund Me page.



Thursday, September 24, 2015


 Kyle Alfriend, speaking at the Inspiration Dinner, before the Nations Triathlon for The Leukemia Society.




Life Lessons: Unraveling Pediatric Cancer

Monday, August 10, 2015

The Big Day

Unbelievable.  





The Big Day

I have not been on this space for a long time.  Two and a half years.  I could not come back here, after losing two great fighters, Joe Friend and Christina O'Bryan.  However the joy of this past week-end brought me back.

This week-end, Tyler was married.  This morning, at 5:30 am, I drove them to the airport.  They are known their way to Maui.  I'll post pictures later.  An incredible wedding.  A great victory.

Thursday, January 17, 2013

Lance Armstrong - My Take

Six years ago I read Lance Armstrong’s book, “It’s Not About The Bike”. As a father of four very athletic boys, we were always impressed with Armstrong’s accomplishments.  And the story of his fight with cancer was very inspirational.  He wrote of meeting kids with cancer, and being inspired by their determination.  He said, “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. We have two options, medically and emotionally: give up, or Fight Like Hell.”

A couple of things have changed since reading that book six years ago.  The most recent change is Armstrong’s fall from grace. He’s guilty of doping to win his races, and admits it.

Another thing changed since I read his book, one much more personal.  My son Tyler, 15 years old, was diagnosed with advanced stage IV Lymphoma and Leukemia.  In an instant my son was thrown into the horrors of chemotherapy, surgeries, spinal taps, and bone marrow treatments.  I confess that, prior to that, I never understood the meaning of the phrase “Fight Like Hell”.  But on that day, November 14th, I became introduced to the ugly world of children fighting against cancer…innocence verses evil.

My son’s slogan became “Fight To Win”.  Through a year of victories and setbacks, we often repeated our version of Armstrong’s quote, “We will never give up.  We will Fight Like Hell.  We will Fight to Win!”

Now Lance Armstrong is confessing to Oprah.  He lied, cheated, and intimidated to win races,.  And he also raised over $500 million for cancer research. So does the money he raised for cancer research offset the doping and lying?
   
Armstrong committed the sin of winning at all costs, and was rightly stripped of those wins.  So here is my question:  Was his sin any worse than the sin of doing nothing? Is cheating worse than never fighting?  I’m not defending his cheating.  I'm saying that if Lance can raise millions for LiveStrong, than I can do the same for childhood cancer. I don't care about his motivations. The only person I control is me.  And my choice is to either sit on a sofa, or get off my butt and impact the world.  Give up, or fight like Hell.
 
A friend reminded me that I am not a celebrity, that there are limits to what an average person can do.  But is that true?  Consider these ‘non-celebrities”.
·        
  •       Alexandra “Alex” Scott was a 4 years old and fighting cancer. She decided to sell lemonade to raise money to cure cancer. Word spread, and she quickly collected $2,000. At age eight Alex relapsed and passed away.  In those four years she had raised over $1 million. Today her family continues her legacy with Alex's Lemonade Stand Foundation.  They have raised over $60 million for childhood cancer research.

  • ·         Georgia Cleland was diagnosed with leukemia at six years old. Her father decided to run the New York marathon to raise money. He trained a team of 38 runners, who collectively raised $322,000. They became Team in Training, and have now trained over 400,000 runners.  Last year they passed the $1 billion mark in funds raised for cancer research.

  • ·         Laura Graves was a teenager with leukemia, and could not find a matching bone marrow donor within her family. So they did what had never been done before... took the search to the general public for a match.  After Laura's successful transplant, her family began creating a nationwide network to register bone marrow donors. They continued building their network, even after Laura passed away two years later from a relapse. Today, The National Bone Marrow Donor Registry houses a database of more than 11 million donors and facilitates in 200 life-saving transplants a month.

  • ·         The day after my son was diagnosed with cancer, a large gift box arrived.  The word “Victorious!" was written in bold letters on top.  Alicia Rose, another teenager fighting cancer, had experienced the loneliness and unique struggles of teens on a children’s cancer floor.  She decided to create gift packages, designed exclusively for teens fighting cancer. Today the Alicia Rose Victorious Foundation delivers gifts to teens with cancer throughout the U.S.  They have also built Teen Centers in over 40 hospitals, with large, DVD players, movies, computers, video games, pool tables, air hockey tables, foosball tables, and more.

  • ·         At age 14, A.J. Piniewski lost his battle with cancer. Only a few months later his father, Bob Piniewski, flew to MD Anderson in Texas to meet my son undergoing the same treatment. He came to comfort us, as well discuss his idea for a foundation to unify the voices of all the families fighting for a cure to childhood cancer. Today PAC-2 (People Against Childhood Cancer) promotes awareness, shares information, provides resources, and is now the largest data base of foundations, causes, and policy updates in the world of pediatric cancer.

None of these people are millionaires, actors, or sports heroes. They are just like you and me. And they all had a vision and a dedication to see it through. So can an average person with a passion really change things? It has been suggested that it might be the only way things ever really change.

So here is my response to what Lance Armstrong has done: It is to ask what have I done.  What impact have I made?  Right now, today.  I have seen firsthand the horrors of childhood cancer.  It is the #1 disease killer of U.S. children, 46 newly diagnosed a day. I know the lack of funding, lack of research.  And I know that the only thing that matters is my response to these realities.  That is the only thing I control.

Was Lance Armstrong apology sincere?  I don't know and don't care.  This is what I know. If Lance Armstrong can raise $500 million, than so can I.  I will not lie down and accept random outcomes.  I will not wait for "somebody" to do "something" about childhood cancer.  I will call congress and I will sign petitions.  I will run, bike, and shave my head for fund raisers.  And when I think I’ve done enough, I will go back to the cancer floor at Children's and learn again the meaning of “Fight Like Hell, Fight To Win.”

These are the things I control, and the only things that matters.   And now I need to go. Words without action are meaningless, and I’ve been on this computer too long.  

Friday, January 11, 2013

Light The White House


We need your help.  Not a donation, just a couple minutes of your time....

The #1 obstacle is saving our children with cancer is finding.  The #1 problem with funding is awareness.

So here is something you can do, right now.
September is National Childhood Cancer Awareness Month.  This September, the entire childhood cancer community wants to see the White House lit in GOLD to raise awareness of the tragedy of childhood cancers.  
The White House has an online petition service and is required to formally respond to any petition that receives 25,000 signatures within the allotted time frame.   The petition: 
Light the White House gold for the month of September to honor pediatric cancer fighters and bring light to the cause has reached nearly 4,600 signatures in just 3 days.  But it only has until February 7, 2013 to reach 25,000.
Please visit the petition site at https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX to sign in support.  Please share the link with friends and family.
We the people (against childhood cancer) can have our voice heard and our heroes honored this September, please join us in this campaign.