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.  

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 example...it 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 KyleRunning.com 

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
 

Wednesday, May 16, 2012

Creating Hope Act


Please Take Action - May 14, 2012




"We must all hang together, or, assuredly, we shall all hang separately."

Benjamin Franklin at the signing of the Declaration of Independence, July 4, 1776


The Creating Hope Act will stimulate research by pharmaceuticals and save kid's life's. As it makes its way thru the legislative process, KIDS V CANCER and we ask for your support at key junctures. TODAY RIGHT NOW IS A KEY JUNCTURE! Please take action today - 2 phone calls. THANKS!!   Here's the request from our friends at KIDS v CANCER:



Last week, the US House of Representatives Energy and Commerce Committee passed the Creating Hope Act as part of a larger FDA bill!  We now have the Senate to go.  

Tuesday, the Senate will consider an FDA bill on the Senate floor that does not yet include the Creating Hope Act.   

We need your help to ensure the Creating Hope Act is attached to the Senate FDA bill.  Senators Harkin (D-IA) and Enzi (R-WY), as the Chairman and Ranking Member of the Senate HELP Committee, have the power to include this important language in the FDA bill.

Please take 5 minutes TODAY to call Chairman Harkin’s and Ranking Member Enzi’s offices and tell them why this is important to you.

We will only be successful if YOU take ACTION immediately.  Senator Harkin and Senator Enzi need to receive hundreds of calls before 5pm EST today  to understand that it is important for pediatric cancer patients.
YOUcan make the difference.  

Make your calls and then please share this action alert via email, Twitter and Facebook.

Below are the numbers for Harkin & Enzi’s offices.  Please speak with the staff member who answers the phone, using the script below.  If no one answers, leave a voicemail.  Be respectful to the staff, but express your urgent concern.

  1.  Chairman Harkin (D-IA):  202-224-3254 (if you live in Iowa please say so on the call)
  2. Ranking Member Enzi’s (R-WY) :   (202) 224-3424, Toll-Free (888) 250-1879 (if you live in Wyoming please say so on the call)
Sample Scripts:
Parent/Family/Caregiver/Friend:  I am a parent of a child with cancer.  I am calling you because I’m concerned that the Senate FDA bill does not include the Creating Hope Act, legislation to promote drug development for pediatric cancers and other pediatric diseases.   Please make sure the Creating Hope Act is included in the final version of the FDA bill.  My child is (a pediatric cancer survivor)/(undergoing treatment for a pediatric cancer)/deceased.

Physician/researcher:  I am a physician working to treat pediatric cancers / rare diseases calling because I’m concerned that the Senate has not yet included the Creating Hope Act in the FDA bill.  The Creating Hope Act provides market incentives for new drug development for pediatric cancers and other rare pediatric diseases.   Please include the language from the House FDA bill’s Creating Hope Act in the Senate FDA bill. 

Please share how your calls went on our Facebook page
https://www.facebook.com/kidsvcancer  or
info@kidsvcancer.org.


More information on The Creating Hope Act:
Although the United States is a leader in drug development, almost no drugs are being developed for American children.  Some 27% of those affected by one of the 350 most “common” rare diseases die before their first birthday because there are inadequate or no drugs for these babies.   In addition, in the past 20 years, there has been only one initial FDA approval for a drug for any pediatric cancer.   Because the market for pediatric rare disease drugs is small relative to other diseases, pharmaceutical companies cannot develop drugs for children with serious and rare diseases.



The Creating Hope Act generates market incentives for drug development through the establishment of a priority review voucher for pediatric rare diseases.  Under this program, a company or institution that develops a drug for a pediatric rare disease and receives FDA approval also receives a voucher.  That voucher comes with rights to priority FDA approval for any other drug which results in the second drug getting to market many months earlier.  The voucher would be fully transferable.



The Creating Hope Act does not require any tax payer spending and has bipartisan support.  It has 168 cosponsors in the House.  On September 23, 2011 Representatives Michael McCaul, G.K. Butterfield, Sue Myrick, and Chris Van Hollen introduced the Creating Hope Act (H.R. 3059) into the House.  It was introduced into the Senate on March 17, 2011 by Senators Robert Casey, Scott Brown, Sherrod Brown, Al Franken, and John Isakson (S. 606).



On May 9, 2012 the House Energy and Commerce Committee passed the Food and Drug Administration (FDA) Reform Act of 2012, which includes the Creating Hope Act as Section 865.   Chairman Upton and Ranking Member Waxman agreed to Section 865, which modifies the Creating Hope Act to be a demonstration project of three vouchers with a sunset and GAO evaluation.



The Creating Hope Act fills an important gap in policy initiatives to encourage drug development for pediatric rare diseases.  BPCA and PREA only provide for relabeling of adult drugs for use by children, not for new children’s drugs.


The Creating Hope Act builds on the “FDA Amendments Act of 2007,” which established a priority review voucher for drug development for neglected tropical diseases.

The Creating Hope Act of 2011 closes a loophole that allows pharmaceutical companies to receive vouchers for drugs that are already marketed abroad and allows the vouchers to be transferable.

Visit People Against Childhood Cancer at: http://curechildhoodcancer.ning.com/?xg_source=msg_mes_network

Tuesday, March 20, 2012

Creating Hope Act

On behalf of Nancy Goodman, Founder of Kids v Cancer, and kids everywhere, today we ask for your immediate support for the Creating Hope Act!! Kids v Cancer has reached a critical point in the passage of the Creating Hope Act!

Thanks to the thousands of you who wrote their members of Congress and urged them to cosponsor the Creating Hope Act, 150 Representatives have pledged their support.

We hope to pass the Creating Hope Act by attaching it to a major piece of legislation, PDUFA. However, at this time, the draft House Chairman's mark has been issued without the Creating Hope Act. We are disappointed, but we still can get it attached if we act now.

We can still ask that the Creating Hope Act be attached to Chairman Upton’s mark -- eg part of the first draft of PDUFA considered by the Energy and Commerce Committee of the House of Representatives. In addition, we can ask Congressman Bilbray to introduce the Creating Hope Act as an amendment to PDUFA.

Let's give one final push -- along with everyone you know, please call these Members of Congress listed below TODAY and urge them to pass the Creating Hope Act!

For each call, please tell the receptionist why you care about pediatric cancer and other pediatric rare diseases.

There has only been ONE initial FDA approval for a pediatric cancer drug in 20 years! We need the Creating Hope Act to change this!

Please make 3 calls:

Congressman Upton
(202) 225-3761
The Ask: “Please include the Creating Hope Act in your Chairman’s Markup of the Prescription Drug User Fee Act- PDUFA.” (pronounced pih-Du-fa)

Congressman Bilbray
(202) 225-0508
The Ask: “Please urge Representative Bilbray to include the Creating Hope Act in his Chairman’s Markup of the Prescription Drug User Fee Act- PDUFA. If the Creating Hope Act is not attached, please introduce it as an amendment to PDUFA” (pronounced pih-Du-fa)

Congressman Waxman
(202) 225-3976
The Ask: “There is an immediate need for innovative drug development in childhood cancer and other rare pediatric diseases. Please support the Creating Hope Act so we can get new drugs to children as quickly as possible!”
(Explanation: As the ranking Democrat, it’s important that Congressman Waxman not oppose the Creating Hope Act even though it grants benefits to the drug industry.)

Please also let us know you called! Post on the Kids v Cancer Facebook wall, or email us at: Adrienne@kidsvcancer.org.

On behalf of sick kids everywhere, thank you.

Thanks PAC2!!

Monday, January 30, 2012

Tuesday, January 3, 2012

The Fighting Goalie



I have long thought teenagers with cancer seem very isolated. They face a very unique battle, one that is difficult the rest of us to fully understand. They have a full adult understanding of what is before them. But they have very little life experience to help them deal with events that few adults handle well. Just as they are tasting life, it is ripped from them.

They are at an age that begs for independence, but are forced into dependence on others. Just when they should be out seeking and learning new relationships, they are isolated around family, nurses, and doctors. While their friends are stressing over what to wear and who to date, they face decisions involving sterility, amputation, and life itself.

When I was 15, the greatest fear in my life was a delay in getting my learners permit to drive. Tyler was diagnosed with cancer at 15, one week before getting his learners permit. Suddenly the questions changed from "when" to "if". Would he ever drive? Would he return to school? Would he fall in love, ever date, ever get married? Would he have a career?

The questions are never asked, but they hang in the air.

The response from these young adults, from my observation, is amazing. Their singleness of purpose, their fight, their passion for life, is life something I had never witnessed before. They demand information and face the answers with courage. And they respond to everyone with an outpouring of love and compassion.

One of the greatest illustrations of this is Christina O'Bryan. In her small body, she has more fight per pound than anyone I have every witnessed. At 19 years old, she has been fighting for over 6 years. And her fight has never diminished.

They say teenagers are spastic and unfocused. But how many of us have focused non-stop on a single objective for over 6 years?

Christina is living, walking proof that cancer does have limits. Even when cancer Christina's hip, she refused to slow down. Doctors said she must give up her passion for hockey, but "give up" does not exist in her vocabulary. So Christina became a goalie on a sled hockey team, and has risen the the highest level she can in the sport. You see, cancer can not touch the soul, can not touch the heart, has no access to the spirit.

And I know something that cancer has not yet figured out...that a fighting goalie will never lose.
Always fight to win.