Monday, August 18, 2008

Stuart Holden and the Olympics

Tyler is doing great. We are so thankful for all the support, and all the friends we have made.

Below is a link to an article about U.S. Olympic soccer player Stuart Holden and his relationship with A.J. Piniewski. Just like Tyler, 15 year old A.J. began his long battle with Burkitt's Lymphoma last year. I mention this because A.J.'s father, Bob, always had this uncanny ability to send me words of encouragement just at the right moment during some of the darkest times of Tyler's fight.

Then, when Tyler and I were at the MD Anderson Hospital in Texas, Bob rearranged a business trip to visit us. I could never explain how much that visit meant to us. And I will never fully appreciate emotional toll it took for Bob to reach out to us.

Supporting your son through cancer involves a lot of waiting. Your son does all the fighting. You sit. You hope. You dream. You pray to God. You yell at God. Then you beg God. And then you wait some more. Bob did the same with A.J. for 8 months. Waiting. Sitting. Hoping. Praying. And then waiting some more. And then, only months after his son A.J. passed away before his eyes, Bob walked back into the hospital to sit and wait with us. It was an act of kindness and compassion I will never forget.

Bob is now behind the cure childhood cancer petition. Here are the facts on why our children are ignored. Cancer research facilities and pharmaceutical companies see the numbers:

Newly diagnosed cases per year:
Lung cancer.... 215,000
Prostate cancer.... 186,000
Breast cancer.... 184,000
Colon cancer.... 150,000

All childhood cancers combined.... 12,500
And how many of those are teenage cancers? 950 (Think of all the pictures you have seen of cancer patients. Ever see a teenager? Probably not)

The ugly truth is that decision makers do not see the "return on investment" on childhood cancer research. The "market" is not there. And here are the results:
  • In the past 25 years, only one new drug has been developed for childhood cancers,
  • Most drugs for childhood and teenage cancers are little more than mega doses of adult chemotherapy, most developed more than 30 years ago.
  • The only recent drug to improve Burkitt's is rituxin, a drug discovered by accident. It was developed for arthritis (a "profitable market").
  • The number of teenagers diagnosed with cancer is increasing.
  • 15-22 year old's are the only age group where survival rates are declining.
  • For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
  • Teenagers have the highest cancer fatality rates of any age group (other than 70+). Their cancers tend to be much more rare, therefore lacking established treatments.
  • At the time of diagnosis in teens, the cancer has already spread in 80% of the cases. That is compared to the 20% in adults and 35% in children.
  • It has been known since the 1950's that cancer responds differently in teenagers, and the treatments are less effective. But there has been almost no research into the reasons. An adolescent cancer tissue bank is finally being discussed and looking for funding. The Lance Armstrong Foundation is the primary donor and driving force.
Bob has one single goal. Awareness. The petition is requesting the networks to do a special on childhood cancer. He believes that, if everyone heard the stories and knew the facts, they would demand a change. So do I.

"First they ignore you, then they laugh at you, then they fight you, then you win"
- Mahatma Gandhi

If you agree, please sign the petition. Then pass it on to everyone you know.

Here is the story of Stuart Holden and and A.J.

And here is A.J.

1 comment:

AJay Piniewski said...

i love that quote....found it in a book by some left wing there!