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


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 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.  

Wednesday, November 28, 2012

The Real Numbers - Not 80%

Sometimes you can make any point you wish with statistics. 
There is a statistic I hear often about childhood cancer, that the average survival rate is 80%.  That number is very misleading,   It is sort of like saying a guy drowned in a river with an average depth of three feet.  It tells only tell part of the story, and thereby distorts the truth.  I would like to share the other numbers.

The problem with the 80% is that it comes from using the same guild lines used on adult cancers. The average age of an adult with cancer is 65, and survival rates are typically tracked for 5 - 6 years.  After that, the average patient is in their 70's, making it difficult to distinguish cancer related issues from age related issues. Therefore the stats are simply not tracked after 5 years.

Pediatric cancer is very different.  The average age of a child with cancer is 7 years old. These children have many decades of life remaining...years the 80% number ignores.  A quick Google search of long term effects of childhood cancer will give you a long list of all the potential lifetime problems these children endure.  

To use just one is understandably difficult to identify all the causes of a heart attach in a 70 year old adult cancer survivor. However the connections are more obvious when data shows high percentages of childhood cancer survivors having heart attacks in their 20's and 30's.  Chronic heart, lung, and liver issues, as well as secondary cancers, are just a few of the life threatening health issues these children face.  All issues the "80%" number ignores.  

Bob Piniewski, with People Against Childhood Cancer, has put together the following chart.  It breaks the numbers down, showing the true numbers of pediatric cancer. The data is now available tracking these children for 30 years, and shows that only 22% live full and healthy lives.  And the very troubling part is this: The numbers have remained unchanged for almost 30 years.
Bob explains that, when discussing the potential future life of a child, there is a lot more than just a 5 - 6 year prognosis.  So here are the numbers broken down into the four potential outcomes.  

Outcome #1   34% die.  20% die within 6 years of diagnosis (giving the misleading "80% survive").  An additional 14% die after the 6th year, from chronic health conditions.
Outcome #2   19% live with life-threatening or disabling chronic health conditions
Outcome #3   25% live with mild to moderate chronic health conditions.
Outcome #4   22% (not 80%) live at least 30 years after diagnosis, without chronic health conditions.

And as you look at these numbers, please remember they are more than numbers.  They are children.  Bob and I first met as our teenage sons were battling the same cancer at the same time. 14 year old AJ Piniewski did  not survive.  Click on the "Heroes of Childhood Cancer" slide show in the column to the right to see the faces of these statistics.  

To read the full article, or other information from People Against Childhood Cancer, go to

Saturday, July 7, 2012

Fourth Lap - Columbus Marathon

I am now in training for my 4th Columbus Marathon for the Leukemia Society.

A couple of cool changes...
1. The race is now sponsored by Nationwide Children's Hospital, where Tyler received much of his treatment.

2. The race will run through The Shoe, running into the stadium, circling the OSU football field.

If you would like to support my run, go to 

Friday, June 1, 2012

Childhood Cancer Action Day

With Congress poised to pass sweeping FDA reform, childhood cancer advocates visiting Capitol Hill next week in conjunction with Childhood Cancer Action Day (as part of a program sponsored by the Alliance for Childhood Cancer) are doing so at an especially critical time to present the following issues to legislators:

• New and more effective drugs for children with cancer – Helping to improve and accelerate access to life saving treatments is one of several pediatric drug development provisions included in FDA Reform Act of 2012, which is currently making its way through Congress. For complete details about the requests that advocates are making,
click here.

• Improved treatments for childhood cancer survivors – With more than 350,000 young cancer survivors living in the U.S., and three-fourths of them suffering a chronic condition or late-effect from their cancer treatments, better programs are needed for their follow-up care, psychosocial services, and adjustment to adult life as outlined in The Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act.

• Encouraging members of Congress to work together to help kids with cancer by encouraging House members to join the Congressional Childhood Cancer Caucus, a bipartisan group working to improve the lives of children with cancer.

You can support this effort by sending a message to your members of Congress (and asking your family, friends, and colleagues to do the same). Send a message through the St. Baldrick’s website.

Let’s work together to send thousands of messages to Capitol Hill on behalf of the 13,500 children who are diagnosed with cancer each year in the United States. 

About the Alliance for Childhood Cancer
Founded in 2001, the Alliance for Childhood Cancer is a forum of national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer.

Members of the Alliance for Childhood Cancer include: 
American Academy of Pediatrics
American Cancer Society
American Childhood Cancer Organization
American Pediatric Surgical Association
American Psychological Association
American Society for Radiation Oncology
American Society of Clinical Oncology
American Society of Pediatric Hematology/Oncology
Association of Pediatric Hematology-Oncology Nurses
Association of Pediatric Oncology Social Workers
B+ Foundation
Cancer Support Community 

Chai Lifeline
Children's Brain Tumor Foundation
Children's Cause for Cancer Advocacy
Children's Oncology Group
CureSearch National Childhood Cancer Foundation/Hope Street Kids
Lance Armstrong Foundation
Leukemia & Lymphoma Society
National Children's Cancer Society
National Coalition for Cancer Survivorship
Patient Advocate Foundation
Pediatric Brain Tumor Foundation
Sarcoma Foundation of America
Society of Pediatric Psychology
St. Baldrick's Foundation