Tuesday, January 10, 2017

Keep fighting. Stop struggling - Miles Levin

Miles Levin pasted away at the age of 18.  I probably would have never heard his name unless, two months after his death, my son was also diagnosed with stage IV cancer.  The wisdom of this young man's writings carried us though many difficult days.

His parents have put together his writings into an increadible book, Keep Fighting, Stop Struggling.  Everybody should read this book.  While facing death, Miles brought a beautiful perspective on life.

You can buy the book on this families site by going here.  http://www.levinstory.com/orderbook.html

Friday, December 30, 2016

Christian Barker and the Gold Rush Cure Foundation


Beating cancer is hard, and requires the entire community.  The support we received, especially for others fighting cancer, was a critical reason for my son's survival.

Many families became a source of inspiration, advice, and support. High on that list were Gary and Sandy Barker, parents of Christian Barker. At the time, both Christian and my son Tyler were losing their battle with cancer.  The courage of the Barker's to pursue every option to save their son inspired us to do the same...to break open every door, to search for the impossible.  

Christian's courageous fight, and the way his parents embraced their responcibility in the battle, became a road map for our fight to save Tyler. I saw with confidence that the Barker's example was instrumental in saving Tyler.

Unfortunatly, cancer is still a killer, and Christian did not survive. In response, the Barker's have become powerful advocates for families fighting childhood cancer.  They have created the Gold Rush Foundation.  They do an incredible job, and you should check them out at http://www.goldrushcure.org/

We must never forget, despite all our efforts, children continue to die.  We will continue to fight, until childhood cancer is removed from this earth. 

Below is a note from the Barker's caring bridge. May we never forget.

Dear Christian, We dread this day every year. Today is the 9th Anniversary that you went to heaven. The calendar may move on, but missing you never will. Anyone who has lost someone significant in their life knows what I'm talking about. The memories we have are priceless, and the memories we wish we could create leave a void that can never be filled.😢 You endured so much suffering, yet your faithfulness in God, courageousness, determination, respect and compassion for others, and sweet nature remained in tact your whole life which are just a few of the reasons you still inspire me and others with the legacy you have left. You are my hero and the driving force behind SO much of what I do. I pray that your life isn't defined by your cancer, but by the multifaceted character traits you showed to others, as well as your funny sense of humor, sharp wit, tight hugs, and impressive comic-drawing skills just to name a few. My heart aches and yearns for you because I miss you so very much, but I know you are happy and healthy in heaven. I am SO very thankful to be your mom and that I will get to see you again someday. We love you forever Christian! (((HUGS))), Mom, Dad, Garrett, and Kendall

Tuesday, December 20, 2016

Jesus Christ or Jack Daniels


Christmas is approaching fast. At some point, in between all the rushing through holiday events, we all take a moment to think about the birth of Jesus.

My view of Jesus has changed dramatically over the past several years.  It began when my son was diagnosed with childhood leukemia.  During times of crisis, some people turn to God for help. Others turn against God, blaming Him for the tragedies of life. I did both, sometimes crying to God from my knees, and other times cursing God from the rooftops.

At the time, I became very angry at God.  I now realize my anger was misdirected. My anger was actually at the people who said my son’s cancer was part of God’s plan. My anger was toward those who said I must believe God would handle everything, and I must accept any outcome as God’s will. They said I must learn to just be content. Did God really send his son, just to help us be cozy and content?  Complacency, and doesn’t require any help from God.  If all I wanted was some comfort, and a little help in accepting the troubles of the world, why would I choose Jesus? I’d probably choose Jack Daniels. It’s much easier, faster, and doesn't come with any religious strings attached.

However, I think Jesus intended to be more than just a cosmic bottle of Tennessee Whiskey for our souls.  If Jesus went through all the hassle of coming here, I don't think it was to tell us to accept the unacceptable.  I believe he came to be the power and passion inside us to fight for others, especially the weakest, poorest, and youngest. I believe Jesus calls us to to action, to break through barriers, take risks, and pursue the impossible. He calls us away from the comfortable, and into the unknown.

I’ve been told I must learn to wait on God. How long should I wait, while forty-six children a day are diagnosed  with cancer? I believe in waiting on God.  I believe God has been here a long time, and has been waiting on us. Waiting has never put food in the stomach of a starving child, or placed a roof over a homeless family. Waiting will never cure cancer. Faith requires action, and I choose to believe in the Jesus of action, the Christ of the impossible. The only path to immortality is to fight for things that last into eternity.

So what is your impossible goal?  How do you want to change the world?  My goal is simple. I want to eradicate childhood cancer from the earth before I die. It will not be easy. Big challenges require a lot of hard work, and impossible ones are even a little harder. However I believe in God, so my goals should be worthy of God, and worthy of eternity.

That is my religion.


Saturday, December 17, 2016

JJ THOMAS


JJ plays foot ball, basketball, golf, and runs track.  He also has leukemia.  He was diagnosed two weeks before Thanksgiving.

The Thomas family actually helped us with meals when Tyler had leukemia.  Now they are in the same place, fighting for life.  JJ has completed his first round of treatments, and is prepared to fight to win.  I have no doubt he will be victorious, another miracle.

Remember that no one fights alone.  The Thomas family were among the many people that participated in our fight that saved Tyler's life.  They now need the same from us.

Go to their Go Fund Me page, and help us prove that cancer will never win.



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