TYLER ALFRIEND - FIGHT TO WIN! A Teenagers Victory Against Burkitt's Lymphoma / Leukemia.

The Fighting Goalie

2012-01-03T07:21:00.004-05:00

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.

Tyler's Christmas

2011-12-30T16:32:00.002-05:00

For the 3rd year, Tyler went collected money to purchased kits for stuffed animals for the cancer kids at Children's. This was his best year so far, with over 250 gifts delivered to the kids!

Always fight to win!

The Flying Feather

2011-11-25T16:55:00.005-05:00

Four years ago, Thanksgiving began on the cancer floor at Children's Hospital. This year, it began with us all healthy, running the 4 mile Flying Feather race.

We have so many reasons to be thankful.

Four years ago we were one of just a couple of families remaining on the cancer floor at Children's Hospital. The hospitals do everything possible to get the cancer kids home for holidays. But Tyler was in isolation and doing bad. We have just learned that, while on chemo for Burkitt's Lymphoma, Leukemia had moved into his bone marrow and central nervous system. So we had Thanksgiving dinner spread out on the air hockey table in the play room on the cancer floor.

Then, about 10am, doctors came in with the latest scans and blood tests. They said they would allow Tyler off the cancer floor for three hours. We packed up all the food and plates and ran home. It was the first time Tyler had been allowed out of the hospital since being diagnosed. We knew there was an ugly and difficult road in front of Tyler. But for that day we were all together. We celebrated each other, and we celebrated the now. Everything from tomorrow on was unknown and ignored.

The following months were ugly, just as the doctors promised. Treatments that took Tyler closer to death than I thought was possible. And Tyler continued to fight. Nothing could stop him, even as we traveled other cancer facilities in Boston and Houston.

And now his is a victor. A 15 year old fighter that beat three stage IV cancers. And this Thanksgiving we all ran the Flying Feather. Life is worth living. Life is worth fighting.

Always fight to win.

Fitness and Cancer Survival

2011-11-14T12:49:00.007-05:00

Health and good estate of body are above all gold, and a strong body above infinite wealth.--Ecclesiastes 30:15

Almost daily I am stopped by people who ask, "How is Tyler doing?" The simple answer is "Fantastic!". His recovery is nothing short of a miracle.

Tyler beat a cancer that had spread aggressively through almost every major organ in his body, his bone marrow, and his central nervous system. And, after beating cancer, he avoided the long list of physical problems we were told to expect. His liver, heart, lungs, and immune system have all fully recovered. He looks and feels great.

I am often asked why Tyler had such a miraculous recovery. Well, there were a lot of reasons. And one of the essential reasons has been Tyler's focus on health. The truth is we hammered him with treatments. His physical conditioning allowed us to push well beyond standard protocols.

And once he beat cancer, he jumped back into life with enthusiasm. He ran the last portion of the marathon with me. He regularly works out, plays basketball and football. He's now playing a lot more soccer (largely due to it being a favorite sport of his girl friend).

I believe his attention to total health has been a critical (and often ignored) factor in his survival and recovery.

Below is an article by David Haas. He emailed it to me, and I think it is worth the read.

Fitness and Survival Rates

A diagnosis of cancer doesn't define who you are. No matter what stage of cancer you are in, you are still you, and capable of making decisions that will help you stay as strong as you can be as you battle your cancer. Whether you have just been diagnosed, are undergoing treatment or have reached a remission, it is important to keep yourself feeling as good as you can feel. If you are now cancer free, take advantage of your new chance to follow a fitness program to maintain your health and feel good.

Studies show that the benefits of staying fit and healthy not only reduce the risks of many types of cancer, but can improve the survival rates after the doctor has given a cancer diagnose.

The National Cancer Institute at the National Institutes of Health report that research has indicated that physical activity helps survivors by reducing the fatigue that many experience as part of their treatment and recovery. Working to become more fit through a regular program of physical activity will assist energy balance that serves to improve the quality of life during the time the survivor is in treatment, recovering from treatment and throughout the lifetime.

Studies funded by the NCI are working to find out how fitness plays into improving the prognosis of cancers as well as making survivors gain more energy and looking for evidence that would indicate if it plays any part in the reoccurrence of cancer.

If you have been diagnosed with cancer, whether it is a common diagnosis such as skin cancer or a rare cancer such as mesothelioma, discusses your physical fitness routine with your doctor during each stage of treatment and recovery. Work with your medical care provider to make sure that you exercise program doesn’t interfere with treatment and make adjustments to it as needed. Don’t feel discouraged if you feel that you aren’t making progress on your way to becoming physically fit. Fatigue and other side effects of treatment may be playing a part in how you feel by emotionally and physically.

Ask your medical care provider for information on physical fitness programs that are available in your area. Many times, cancer support groups sponsor sessions for both cancer patients and survivors. The social support of others who have faced the same health obstacles as you are facing often helps motivate the continuation of an exercise routine.

The 99 Percent

2011-11-02T17:30:00.005-04:00

Last month I ran the Columbus marathon. This was my 4th marathon, one for every year since Tyler was diagnosed with cancer.

Most people don’t see me as a runner. Even while on chemo, Tyler laughed hysterically about my marathon plans. He informed me I was, “Too old, too slow, and too fat!” Its true Nike is not likely to sponsor me. Sports Illustrated has never called for a photo shoot. And no one has ever asked if I was from Kenya. But for 5 months I did the grunt work of 575 training miles, and then completed the marathon.

During the race something dawned on me. Less that 1% of people have ever run a marathon. Therefore, old, slow and fat, I’m still included in the top 1% endurance athletes in world. I got pretty impressed with myself.

As the race went past the state capital, there were 4 or 5 of the “occupy” protesters. They were holding signs and chanting, “We are the 99%! We are the 99%!” I started waiving and yelling, “I’m the 1%! I’m the 1%!” They stopped chanting, and just stared at me.

I wasn’t making any political points. I was just hurting and tired and it seemed funny at the time. Besides, I’ve never wanted to be part of any 99%. It’s too crowded. I would rather be among the 1% in just about anything.

Around the 15 mile mark I began to really struggle. Rounding the corner, the band was playing “You Get What You Give”. The song it home. It was a favorite of A.J. Piniewski, who battled the same cancer at the same time as Tyler. I thought about the courage of A.J., Tyler, and so many other children fighting cancer. And I remembered why I was running, and the disciplines necessary to reach the goal.

I began to think about the 1% that really matters. I started thinking about the 1% that change the world, that truly do the impossible. 200,000 women get breast cancer each year. But what percentage responded like Nancy Brinker, starting the Komen Race For The Cure? 8,000 get testicular cancer, but how many responded like Lance Armstrong?

And then there are the numbers I care most about…two classrooms full of children who are diagnosed with cancer every single day. What am I doing to end childhood cancer? Are my efforts in the top 1%? Completing the marathon didn’t require me to be a superstar athlete. To be among the 1%, I just needed to focus and take the disciplined steps necessary to achieve the goal. As A.J. said, “You only get what you give”.

When Bruce Cleland’s daughter was diagnosed with Leukemia, he decided to train people for marathons. His Team-in-Training has now raised over $1 billion for cancer research. The parents of Alexandria Scott raise $15 million a year through Alex’s Lemonade Stand. The gang at St. Baldricks are adding $25 million each year to the fight. Bob Piniewski, A.J.’s dad, is pulling groups together, informing, educating, and continuing the quest of 1 million signatures on his petition.

So what am I doing? Am I a spectator? Am I among the 99% on the sidelines, waiting for “someone” to do “something” about childhood cancer? Or am I willing to do the grunt work necessary, to be among the 1% who are changing the world?

Here is the truth about childhood cancer: There is a cure. It is out there. We just need to find it. So I will run another mile, raise another dollar, write another congressman, and sign another petition. I will continue to help parents looking to new options, raise funds for families, and speak to groups that will listen. I will act, and never wait on someone else to do the work. I will fight, and fight to win.

And I will remember that the only person I control me. Therefore, what’s going to be, is up to me.

I will be the 1%.

Tyler continues to do great. He is cancer free and healthy. He is now a sophomore at Ohio State.

A.J. did not survive. He passed away at age 14, and is a legacy to the need to find the cure NOW! A.J.'s dad, Bob Piniewski runs People Against Childhood Cancer. a great source for information.

Christina O'Bryon has been fighting cancer through all 4 of my marathon runs. She continues her fight with incredible strength and courage. I dedicated my run to her fight, and there is no doubt she will beat cancer. She is a fighting goalie that will never lose.

The Home For Home - $400,000

2011-06-26T09:50:00.002-04:00

We did it! $400,000!

Yesterday was the end of a year long project, to raise money for cancer research. We built a home with Charles Ruma and Virginia Homes, with all proceeds going toward cancer research.

The home was completed, and we sold it a auction yesterday. Winning bid...$400,000!

100% of all proceeds go to cancer research. 90% to new research facility at The James cancer hospital at Ohio State, and 10% going the Lance Armstrongs LiveStrong organization.

Thank you to the Ruma family, and the many, many people that made this all possible. I'll update with pictures as soon as I get them.

Laps 4 Love

2011-05-15T14:21:00.019-04:00

We and a great time at Laps 4 Love. The music was incredible! Ladies of Longford, Johnny and The Revelators, Noyse Avenue, and The English Project. Thank you all very much!

Ever launch a fruit cake across a football field, through the goal posts? No easy, but we had a lot of winners (a lot more than I expected). Thank you to Sister's Sweet Shoppe that put all of that together.

Clowning in Columbus, J. Liu's, Ci Ci's, Columbus Zoo, and many more made a great event!

A Life Worth Living

2011-04-10T10:44:00.009-04:00

It is odd how different things effect people differently.

At no point did my mind accept any possible outcome than Tyler's complete recovery from cancer.

None of the overwhelming mortality statistics phased me at all.

I was also unaffected by the pages of potential side effects from treatment. All the risks of permeate damage to liver, lungs, heart did not worry me. Chemo induced secondary cancers, diminished mental abilities, and shortened life expectancy were all irrelevant. We would fight, and we would win. There would be not death, and no lasting side effects. my mind easily accepted this, and the statistics were irrelevant.

But then one potential side effect that knocked me off my feet. It sounds really stupid, but it was the only one that caught me off guard, They said the chemo damage to Tyler's lungs would prohibit him from SCUBA diving.

Some would think that is getting off very easy. No great loss. But for some odd reason, that one really bothered me.

Well, Tyler did beat cancer. And he beat all the dreaded lasting side effects. And his lungs are in full operation. And, last week, we spend 9 days SCUBA diving.

Check it out. It was worth the fight.

Travis, Tyler, Erik, me -- doing the O-H-I-O on the ocean floor

Tyler chasing the turtles.

Travis

Me helping Erik with his gear.

Probably should have keep the regulator in my mouth. Air is a good thing.

Erik and Tyler with their grandmother.

Erik is counting his fngers after finding the shark hiding in the reef.

Exploring the caves

Hugh Crab

Lots of tunnels and caves to explore

Eriks show and tell

Laps 4 Love

2011-04-06T11:36:00.003-04:00

Our Friends

Saturday, April 30th

Our 3rd Laps 4 Love event

Supporting local children fighting cancer.

Lots of Games

Lots of Food

Lots of Music

Lots of Fun

A great time for a great cause.

Saturday, April 30th, noon - 6 pm.

Sells Middle School

Bridge Street in historic Dublin

25 Years

2011-04-05T18:21:00.003-04:00

There is an old saying...Opposites attract, and then they annoy. When there is crisis in your life, you tend to revert to the very core of who you are. If your and your spouse are opposites, that can cause some bumpy road. When we learned that Tyler had cancer, and that it was moving aggressively, we immediately went to war with cancer. Kathy fought with her strength, which faith, quite trust, and comfort. I fought with my strength. All out war. Questioning every treatment, spearing every option, tracking down and demanding the best doctors and hospitals. One might think it is a good combination. But one would be wrong. Actually I guess it is a good combination. It saved Tyler's life. But our relationship became a train wreak. From what I'm told, this is not unusual. Tyler is now 2 1/2 years in remission, and doing fantastic. And Kathy and I continue to work through the damaged relationship. The bottom line is this: There is no right or wrong. We both did what we thought was needed to save Tyler. Every decision was based on love for him. And we will never fully know what decisions helped, hurt, or were indifferent to Tyler's recovery. So that brings it all down to this simple reality: I love you, Kathy. I am happy that today we have been married for 25 years. We will continue to work through everything. We will continue to fight to win, and learn from each other. And maybe, over the next 25 years or so, we'll have all figured out and write a book. I love.

Laps 4 Love

2011-04-03T12:54:00.004-04:00

Laps 4 Love

Saturday, April 30th, 12-6

Sells Middle School, Dublin, OH

Benefiting local children fighting cancer,

through the Make-A-Wish Foundation

Come join us for Laps 4 Love, a great time, for a great cause.

We have...

Live mucis from 4 bands

Food from Ji Lui's and CiCi's Pizza

Dodge Ball

Tennis

Fruit Cake Tossing contest

Clowns

Moon Bounce

Carnival Games

And much more

Come on out, and show your support for....

Christina O'Brian

Evan Schroeder

Olivia Delahunty Kyle Teeters

The Methuselah Life

2011-01-31T18:00:00.007-05:00

Our dear friend Matthew Barr passed away this week end. He is 5 1/2 years old.

It was about 15 months ago that doctors said Matthew only had weeks to live. But Matthew proved them wrong. He fought an incredible fight.

I have never heard a voice sound as pure and innocent as Matthew's. It is as angelic as his face. I was always amazed that a boy with such amazing fight and courage could have such a sweet voice. I was always taken back by how small he looked on the large hospital beds on the cancer floor at Children's. He would be surrounded by IV and monitor lines. But I would feel so relaxed as I watched him sit there playing with his trucks, wearing that wonderful calm smile.

Matthew never gave up. he fought to the end, and is now free from cancer and pain.

But the pain still remains for the rest of us, especially his family. As Bob Dylan says, "When you have nothing to lose, that's when you find out you can still lose a little bit more."

I believe that the purpose of life is not found in the number of our years. Rather, it is found in the impact we have on others. Matthew Barr impacted every one who meet him.

The other day a friend told me about a guy by the name of Methuselah. Apparently Methuselah is mentioned in the Bible as the oldest guy to ever live. According to the Bible he was 969 years old. I'm not really sure how all that worked. Maybe his wife just told people that to get some sympathy. But odds are Methuselah was about the oldest guy around.

I was told that story the day before Matthew passed away. I've thought a lot about it. In 5 1/2 years, while fighting cancer, Matthew was still able to impact thousands. He became a living example of what is good and strong and pure. In 5 1/2 years, he had a greater impact than I have in 50 years.

It seems I sometimes live as though I am Methuselah, like I have all the time in the world. Like I could accomplish so much, if just given enough years. But that's not how the deal works. It's doubtful I'll live to be 969 year old. And actually tomorrow is not a guarantee. All I have is now. Nothing else is for sure.

Cancer stole Matthew. But it could not steal him impact on this earth. So what are all my years worth, if I am not impacting others, changing the world? Even if I live to be 100, within a couple of generations even my own family will have forgotten me. All the matters is the impact. And the only time I have for sure is now.

So how important is this one day? Well, I know how hard Matthew fought to receive it. And so did Mason, Zac, Alexis, Kelsey, Rachael, Matt, AJ, Ryan, Trey, Robbie, and so many others. But they were denied. They fought with their life for this day that was so freely handed to me. What have I done with it?

The clock is ticking. It never stops. The only question is this. Will I be Methuselah, living like there will always be more time? Or will I be Matthew, living and cherishing every moment, impacting other for good?

At the beginning of each day, life asks me that question. As each day ends, I've given my answer.

Don't say you don't have enough time. You have exactly the same number of hours per day that were given to Helen Keller, Pasteur, Michelangelo, Mother Teresa, Leonardo da Vinci, Thomas Jefferson, and Albert Einstein - H. Jackson Browne

I close my eyes, only for a moment, and the moments gone. - Kansas

And though you want to last forever, You know you never will. And the good-bye makes the journey harder still. -Cat Stevens

Conduct yourselves wisely, making the best use of the time -Colossians 4:5

You have a gift and you best start using it, cause if you don't, your gonna wind up losing it. So get busy like a school boy making an "A", cause time my brother is ticking away. -DC Talk

Strength to Strength

2010-11-09T12:36:00.004-05:00

I ran the Columbus marathon a few weeks ago. The highlight of the day was at mile 25. Tyler, now two years in remission, was there to greet me. Two other sons, Travis and Erik, were there as well (Brandon was up in Michigan). We all ran the last mile, crossing the finish line together. It made all the miles, including the 571 miles of training, worth every step.

Preparing for a marathon is simple. You push your body to the limits of your strength, recover, then push farther, creating a new limit, constantly increasing strength and confidence. It's a principle called "Strength on Strength" training. Each week you force yourself a little farther, faster, and taking on more resistance. Each week building more strength and endurance for the more difficult challenges still ahead.

This is really the same process used in fighting cancer. Except the intensity is a thousand times greater, and the outcome is life or death. And it's our children doing all the work. Aggressive chemotherapy pushes their bodies to the limit, attempting to kill everything except the most vital organs. Then treatments back off, allowing the body to “recover” as it fights the side effects. And then more chemo, higher doses of pure poison, simultaneously pushing the body closer to both the cure and the grave.

As I watch these young people, I am in awe. Their bodies are beaten. But through the pain, I see an incredible strength emerge. Strength of character, compassion, and courage. I see a joy and thrill for life. A passion to enjoy everyone and everything around them. As their options are eliminated, their focus becomes clear. They understand the meaning and purpose of life more more than the rest of us.

And when they win, when it is all over, they do not run. They move past the painful memories, and return to support their friends. Strengthening and encouraging. Helping them move from strength to strength.

Tyler spent a year of Hell on the cancer floor. I saw the pain as he lost his friends Brett, Duck, Ryan, and others. But he will be back this Thanksgiving serving dinner to the families on the floor. And for the 3rd year, he will be delivering “Stuff and Fluff” bears to the kids on the floor for Christmas.

Kylee Bornhorst was diagnosed the same day as Tyler. She beat cancer, and reurned to school. And now she will soon be joining the hospital staff as a counselor working with the kids.

I saw Joe Friend in ICU, battling his 2nd relapse. He spent the entire time talking about the “most perfect job in the world”…coming back to Children’s to talk and play with the kids on the cancer floor.

Jake Silberg also went through horrendous treatments for Burkitt’s, the same cancer Tyler beat. Jake beat the cancer, and now has committed his life to becoming a pediatric oncologist. In the mean time, he is running marathons and triathlons for the Leukemia Society.

Christina O’Brian, fighting her 3rd relapse, continues to maintain the brightest smile I have ever seen. Nothing, absolutely nothing, can bring her down. And her attitude is contagious throughout the entire cancer floor.

And the stories go on and on. These are my heroes. Just read their words. Feel their inspiration, as they move from strength to strength.

I can not believe this year and all of the things I have got to do. I am so happy to be where I am, and so glad I have had to fight to get here. Who doesn't have ups and downs growing up....Mine just had chemo involved. – Christina O’Brian

Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!
--Jake Silberg

During chemo you find you're stronger than you've ever been. You're clear. Your mortality is close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous. – Melissa Bank

Whatever happens in life, fall in love with it. –Cory Pike

Don’t ever have any what-ifs. Live your life to the fullest. – Bradley Brock

I want to only have experiences that count, that matter. That teach me or someone else something that matters. If life isn't growth, if survival isn't achievement, then what am I doing this for? - Sean Swarmer

I hate it when people give up. Don't ever give up. Follow your dreams. – Brenden Foster

I want to die from an overdose of life - Robbie Russell

Trials make or break a person. The greater the ordeal, the more strength you'll attain upon surmounting it, or the further you will fall. I am doing fine because I refuse to do otherwise. That much is mine. – Miles Levin

These young people have taught me the meaning and purpose of life. From my perspective, they are the very definition of sainthood.

They go from strength to strength; each one appears before God in Zion. -King David, Psalms 84:7

Fan into the flame the gift of God which is in you…for God did not give you a spirit of timidity, but a spirit of power, of love, of self-discipline. – St Paul, 2 Timothy 1:6-7

I have the strength for everything through him who empowers me. – St. Paul, Philippians 4:13

Please keep all them all in your prayers and thoughts. There are always new and difficult decisions to be made by them and their parents. Remember them, as they continue to fight from strength to strength.

Jared Sylvester arrived at Children's yesterday, and has begun treatments.

Christina OBrian, always positive, is fighting through her 3rd relapse.

Joe Friend, big brother to everyone on J-5, will be back this week for port surgery.

Matthew Barr scans came back stable, but continues to have good and bad days.

Luke Torres continues to fight strong through some difficult times.

Alexis Agin is in very difficult territory right now. But she continues to fight strong.

Matthew Barr

Luke and his dad

Alexis and her dad

Joe and Holly Friend

Christina O'Brian, the fighting goalie

Then and Now

2010-10-12T09:43:00.005-04:00

I see a lot of runners posting "Then and Now" or "Before and After" pictures. They like to show the transformation they bodies have gone through during training. The pictures are always very impressive.

When I think of my own "Then and Now", I don't think first about the changes in me. I think of my inspiration.

When Tyler challenged me to run a marathon, his fight with cancer was not going the direction we had hoped. The battle was turning very ugly. Then, as i crossed the finish line 10 months later, Tyler was winning his fight. He was beating cancer for good.

So here are my "Then and Now" pictures. From the 2008 marathon to today.

Not of me, but of my inspiration. Tyler Alfriend

Then...

Now...Then...Now...Then... Now...

Then...
Now..

The Amazing Race

2010-10-08T14:43:00.004-04:00

525 training miles completed. 20 remaining training miles. Then the starting line. October 17th. 26.2 miles.

The day before the race I will drive the course…picture what I will be doing at each mile. Counting every mile to the finish line.

The thing I love about running is that every mile is a victory. First place or last…running, walking, or crawling..it is constant forward motion. Every mile is earned, and can never be taken away.

It's important to count your miles and know where you are. I learned this after the worst race I ever ran (to date, that is). It was 10 miles. I had never run over 7 miles, and never raced more than 3.

My strategy was to start with the front runners, running as fast and far as I could with them. That would carry me at least half way. Then I would gradually slow a little at each mile, still finishing at a good pace.

Stupid strategy.

I died, and died fast. I couldn't breath. Everything hurt. I lost track of were I was, had no idea what mile I was at. But just keep pushing. Finally I saw a mile marker…only one mile to go. I ran that last mile with everything I had in me.

That is when I realized there was a triathlon using the same trail, and I was reading their markers. I still had another 4 ½ miles.

Everything hurt. I was hurting in places I don’t even know I had. At the fluid stations I was throwing two cups of water on my face, and then gulping Gatorade. At mile 8 I got confused and threw Gatorade in my face. Now I really had to keep running…I was attracting bees.

It was a horrible race.

I think about that race when I see these kids fighting cancer. They are in a race for their lives, but are never told where the finish line is. They keep pushing and pushing, fighting with all they have. Parents sit and wait and hope and pray. Finally test results come in, only to be inconclusive. And the kids fight on.

Finally some make to the finish line. But the celebrations are guarded. Scans and test continue. Was the finish real? Or will we be told it was a false finish, and the race must continue?

These young people fight their way toward a finish line that moves and changes at will. Their strength and courage is amazing.

Christina O’Brian ran her race, and beat cancer. She won, and celebrated. Then doctors called to say she had relapsed. The finish line is moved, and the race was on again. So she ran and then won again. And then a 3rd time.

Now, Christina has graduated from high school and begun college. She said, "I can not believe this year and all of the things I have got to do. The good is starting to become more common. I would have never guessed in my wildest dreams that I would be a hockey goalie, star in my 2nd fashion show, and starting college. I am so happy to be where I am, and so glad I have had to fight to get here. Who doesn't have ups and downs growing up....Mine just had chemo involved."

And then doctors called again on Friday. It was all a lie. The finish was nothing but a mirage in a large empty desert. The race continues. So Cristina will do what she always does. She will step back into the race. And she will win again. And this time, God willing, she will cross the real finish line. I have no doubt. You see, a fighting goalie will never lose.

The Lord is with you mighty warrior. -- Judges 6:12

Terry Fox amd Pheidippides

2010-09-30T16:40:00.006-04:00

22 miles! Finished my last long training run before the marathon.

486 miles completed...59 training miles and 17 days to the starting line.

I'm told the marathon originated in 490 B.C. with a Greek soldier named Pheidippides. During a battle in Marathon, Greece, he was ordered to run to Athens with an urgent message. He delivered the message, saved Greece, and fell over dead on the spot...a 26.2 mile run from Marathon to Athens.

Yesterday I ran 22 miles. I wasn't wearing any Greek armor, but it still hurt. Half way through the run, I found myself hating Pheidippides. What idiot runs 26.2 miles? Why didn't that stupid SOB just fall over dead at 15 miles? Or even 10 miles. It would have made this whole idea a lot easier.

And then I remembered why I run. Or more to the point, who I run for. Then I was sent this video. Terry Fox. He ran a marathon a day, every day, on one leg. I had never heard of him. After watching this, I'll never forget him.

Well, now my petty 22 miles seems a bit lame. Maybe I should go out and run 50 miles right now (but then again, maybe not).

I admit that I can't run a marathon a day. But does that really matter? I think the really question is this: Am I doing what I can do? As I look out the window, I think of these young people. I think of their courage and passion for life. I think of how hard they fought to receive this day. And I ask myself what have I done to earn this day.

I ask that question a lot. I hope I never stop.

Have a dream, make a plan, go for it. You'll get there. I promise.
-Zoe Koplowitz, after finishing the 1993 NYC marathon, in 24 hours, on crutches, suffering from MS

Don't ever accept anyone else's preconceived limitations. If there's something you want to do, there isn't any reason you can't do it.
-Amy Dodson, Triathlete, lost leg and lung to cancer

Bring it on! Let's do it now. Right now.
-Tyler Alfriend, 15, during especially severe side effects, responding after doctors expressed concerns about his body's ability to continue treatment.

I am doing fine because I refuse to do otherwise. My remaining life is now about something bigger. I must keep on.
-Mile Levin, 18, a few weeks before losing his battle with cancer

Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!
-Jake Silberg, 17, cancer survivor, completed first triathlon last week-end

We have two options, medically and emotionally: give up, or fight like hell.
-Lance Armstrong, cancer survivor

Even if your losing, you have to fight.
Perry Rothaur, cancer survivor

I will not give up on anything. God will take me when it's my time.
-Shane Christensen, 19, shorting before losing battle with cancer

In a race there is only one winner. When I run a race, I do so to win.
-St. Paul, I Corinthians 9:24

They shall mount up with wings like eagles. They shall run and not be weary.
-Isaiah 40:13

There is nothing impossible to him who will try.
-Alexander the Great

Mad Max

2010-09-24T17:31:00.009-04:00

Our very first weeks in the hospital were a blur. I was in overdrive, calling doctors around the world, while signing paper after paper acknowledging we had been told about the risks. Countless visits, calls, and emails from family, friends, doctors, and pastors. They all run together. However there were a few standout moments, events that I still recall with vivid memory.

One of those "standout" moments was after one especially difficult treatment. Tyler was in a lot of pain, and morphine was no longer doing its job. Kathy was home with the other boys, I had asked all the visitors to leave. Tyler was struggling to get some rest.

The two of us were alone in the room. Tyler lay there, struggling with the pain and unable to sleep. I also had very little sleep, as I researched and called doctors around the world. Those actions were necessary in saving my son. But I made the mistake of having some very heated arguments with doctors in Tyler's presence. It was a difficult time, and tensions were high.

We sat in silence in the room, and there was a knock on the door. Tyler said, "Make them go away." I opened the door, and saw a guy in a cowboy hat and cowboy boots. He said he was there to pray for Tyler's healing. Before I could stop him, he walked past me and up to Tyler.

He sat down in a chair, took off his hat, and pulled out a small bottle. He said he was there to anoint Tyler with oil. Tyler shot a look at me, and I walked over to tell him to leave. Neither of us was in the mood for this.

As I stepped toward him, he looked at me and said, "My son passed away." The statement stopped me in my tracks. He spoke briefly about his son, and then about his passion of helping other families facing serious illnesses with their children.

He then bowed his head and began to pray. Many people had been by to pray. Friends, ministers, and even a Rabbi. But this was different. I can't explain it. A feeling of total calm filled the room. I actually recall getting nervous, because I did not understand the feeling. I knew Tyler would win, just as long as I fought aggressively for every available treatment. But at that moment, for the first time since we got there, it seemed okay to relax...even if just for a little while.

I looked over at Tyler, and he too was relaxed. His body was still, and the labored breathing has stopped. His face was completely calm. It was very weird, because I usually don't buy into this stuff. I remember thinking to myself: there is either a new presence in this room, or I am losing my mind (and possibly both).

The guy finished the prayer, looked at Tyler, and asked if he could place the oil on him. Tyler smiled and said yes. He place a drop of oil on Tyler's forehead, and began to pray again. He then walk out of the room. Tyler looked a me and just said, "That was good". He then closed his eyes, and slept more sound than he had since we had arrived.

Later I learned his name was Eric Niemeyer. I learned more about his son Max, who passed away after several years of treatments at Children's Hospital. I still run into him in various places, and am always impressed with what he is doing. He is one the few people I've meet that maintains a confidence that God is in control, while still understanding the need to work aggressively to help save the lives of children.

Eric and his wife Stephanie started MadMax Farms, named after Max and their daughter Maxine. The farm is completely run with their personal funds, and all proceeds go to Children's Hospital. Right now it is a great place to get pumpkins. Everything they have is free to everyone. Any donations go directly to Children's Hospital.

They are up in Powell. You can get directions, and more information about them at madmaxfarms.com

It's worth checking out. And if you ever need someone to pray for you, give Eric a call. It's worth the effort.

Jake Silberg: The Triathlete

2010-09-09T12:37:00.007-04:00

382 miles down...163 miles to the starting line!

I want to give my sincere appreciation for all those who have continued to support my run for cancer. With about 5 weeks remaining to the start of the race, my fund raising goal has been reached -- thank you very much!

These next weeks are critical for the race. I handle well the 13-15 mile runs. But I'm a hurting puppy at 16+ miles. And from this point on, all the week-end runs are 20+ miles (23 miles this week-end). I guess it's a simple question...in this world of give and take, am I will to give what it takes. As I see these young people fighting cancer, how can I ever give up (although there are times I wish I had some of Tyler's morphine!).

I appreciate your continued support through thoughts and prayers. And I have an additional request. I would like to steer your financial support to a good friend of mine...Jake Silberg...also with Team-in-Training.

Jake is the same age as Tyler. Like Tyler, Jake began having stomach pains in 2007. And he also went through one misdiagnosis after another. And finally his parents also heard those words, "We are very sorry. You son has cancer." Jake had Burkitt's Lymphoma, and quickly began months of intense chemo.

One night, as he battled through his treatments, he stood on his bed and wrote in large letters on the ceiling, "Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!"

Our families connected and shared information as our son's battled cancer. After several rounds of chemo, Jake went into remission. Team-in-Train then invited him to speak at the kick off ceremony at the Nations Triathlon.

Jake is an incredible young man. We had the privilege of getting together this past week when his family invited us to join them at the Jersey shore.

Jake continues to give back, speaking at fund raisers, speaking with kids, making his famous pancakes at the Ronald McDonald House.

And this month he will be racing for Team-in-Training in his very first triathlon. I would appreciate any support you can send his way.

His fund raising site is http://pages.teamintraining.org/nj/nattri10/jsilberg

There is a cure. We just need to keep fighting until we find it. And as Tyler says, Whenever we fight, we must always fight to win!

The Faith to Fight

2010-08-30T16:52:00.004-04:00

Bradley Brock

I believe the greatest purpose of life is to impact others. This video is evidence that Bradley Brock, a young man of 17, has impacted the lives of 1,000's. Probably 100's of thousands. How many can say that? In fact, since my son was diagnosed with cancer, I have learned an indisputable truth...these young people, in a short period of time, achieve a greatness that I never dreamed possible. They have taught me the very meaning of life.

And they have taught me something else. There is a cure for cancer. And these young people suffer because we have not done enough. I have not done enough. They taught me, "If it's going to be, it is up to me." Some say, "I can't do everything." They simply look at us and ask, "Have you done everything that you can do?"

I have watched these kids. Standing tall and proud, they can say "Yes". They fight with everything they have to give. And they do so with amazing compassion to others, leaving leave nothing on the table. Can you look in the mirror and say the same? I cannot. But I might be getting closer.

Bradley is in a difficult fight right now. But fight is still on. And in the heart of the battle, Bradley continues to talk, sing, and share his love for his family, his friends, and his Lord. "Don’t ever have any what-ifs. Live your life to the fullest."
-Bradley Brock

Christina O'Brian, without question the most positive and joyful person I have every had the privilege of meeting. She is truly unstoppable. In the middle of the 3rd battle with cancer, struggling to find workable treatments, she smiles the most beautiful smile, and says "I am so happy to be where I am, and so glad I have had to fight to get here. Who doesn't have ups and downs growing up....mine just had some chemo involved." Never forget...a fighting goalie will never lose.

The is something about Matthew Barr I can never get out of my mind. There something in his voice that is joyful and innocent. And something about his face that feels like I'm looking into the face of God. Matthew was in the hospital with us, and then relapsed after we were gone. He has successfully held the cancer at bay for several months, but now things are changing. New treatments are being evaluated as the fight continues.

Well, it is just going to make the cancer even more mad when I beat it. -- Bradley Brock, response when doctors said the cancer was continuing to spread.

When someone gives up. Don't ever give up. Follow your dreams. --Brendan Foster, 11 year old leukemia patient, when asked what makes him sad?

You can pick up where I left off and serve so many others. Hear this plea and respond to it. This is your friend who asks you to accept this challenge. Do something meaningful in your life. After all, that is how you can honor me and my life. -- Brett Gosnell, 20 years old, written 6 days before his death, to be read at his funeral.

If I still want to fight. Why are they giving up on me? --Brett Workman, 17, Burkitt's Lymphoma

Whatever happens in life, fall in love with it--Cory Pike, 20 years old, Burkitt's Lymphoma

Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME! --Jake Silberg, 16, Burkitt's Lymphoma

I will fight. And when I fight, I always fight to win! -- Tyler Alfriend, 16, when told Burkitt's Lymphoma had moved into his bone marrow and Leukemia had set in.

Dying is not what scares me; it's dying having had no impact. I know a lot of eyes are watching me suffer; and -- win or lose -- this is my time for impact. --Miles Levin, 18

My life is more amazing than I could ever dream. -- Andoni Schultz, 18, battling brain cancer since 3, upon his acceptance to Notra Dame

Courage + Believe = Life. -Scott Challis, 18, Liver Cancer

I did not give up on anything. God will take me when it's my time. --Shane Christensen, 19

We just have to play the cards we're dealt, Dad. --AJ Pinewski, 15, Burkitt's Lymphoma, when told all treatment options are gone.

The Faith to Fight

2010-08-22T21:57:00.004-04:00

Sam Bish is 9 years old. Last year he began having leg, which was eventually diagnosed as cancer. In October he lost his leg, and began the long process of beating cancer. As always, there were many ups and downs. But Sam never gave up. He fought with everything he had to give.

He wrote a letter to God during Sunday school:

I love you God! You are the best God in the whole wide world! And help me not to go to heaven. I would like to not go there for a very long time. Help me to learn how to walk again. Help me to go up to the 4th grade in school so I will be with my friends. I love you Lord! My favorite things are video games, television, Zhu Zhu Pets, Star Wars, Marvel Comics, Action Figures, Disney World, board games, my puppy Yoda and my family!

Last month Sam joined friends in Disney World, courtesy of the Make-A-Wish Foundation. On his return, Sam learned the cancer had spread aggressively. Each test brought worse news. Sam continued to fight his courageous battle. But the cancer was stronger than the medical science. We have simply not focused the need resources to find a cure.

Friday, surrounded by his parents and sisters, Sam passed away.

Faith Pruden is also a fighter. For 6 months she refused to quit. As she approached her 7th birthday, she began learning sigh language. She wanted to make sure, if cancer stole her ability to speak, that she could still say "I love you" to her mom and sisters.

Faith continued he fight, even after losing her ability to speak. Then, 12 days after her birthday, she passed away.

Some of these kids survive. Others do not. But never have I seen one quit. They never stop. Their faith and their fight are tied together. This is the lesson they have taught me. It is impossible to meet any of them and remain unchanged. They have a greater courage to live than could ever hope to achieve.

If I still want to fight. Why are they giving up on me?

-Brett Workman, while fighting Burkitt's Lymphoma

Courage is not the absence of fear but the willingness to go on in spite of it.

-Motto, Cancer Free Kids

Complaining? Yes, sometimes I do. Feeling sorry for myself? Certainly. I have my moments. Quit? Give up? Hell no.

-Jon Agin, father of 4 year old Alexis who is battling cancer

Even if your losing, you have to fight.

-Perry Rothaur, cancer survivor

Whatever happens in life, fall in love with it
Cory Pike, last words before dying of Burkitt's Lymphoma

How do you know when it’s over? When it’s over. That may be soon, but it’s not now.

-Mile Levin, while fighting cancer

Brandon and Lisa

2010-07-29T22:37:00.007-04:00

Brandon and Lisa

Coming home exhausted

after a week long music festival.

Two years ago, during his sophomore year at college, Brandon went to Florida for spring break. While there, he met a girl from Michigan. He started calling her, and driving up to Michigan to see her.

As time went on, the trips continued...but at some point her name changed. As it turns out, his interests had shifted to one of her friends.

And then the name changed again. A 3rd girl, another friend.

But this time was different. This time the name stuck. Lisa Magirl.

Soon she was coming down to see us, getting to know us, playing family games with us. She is a wonderful person, and really bring out the best in Brandon.

Then Brandon move in with her family as he did a summer internship in Michigan. We drove up to meet the family. Later they all came down and spent the week-end with us. A great girl from an outstanding family.

This past week Brandon and Lisa volunteered for Make-A-Wish Foundation at a music festival in Tennessee. Then came the big moment...Brandon popped the question after a Carrie Underwood concert. Lisa said yes, and my oldest son is now engaged to be married.

I could not be any more excited. Lisa a great person, and comes from a wonderful loving family. They also have four children, all very close in age to our sons. I know they will have a wonderful life together.

Team in Training: 210 miles down, 335 more miles to the starting line. To sponsor my run cancer run, go to KyleRunning.com

Alice Smith...All in a Row

2010-07-23T14:33:00.008-04:00

Alice Smith is my mother-in-law, and she has spent a lot of time in our home over the past couple of years. She is a great lady, and I actually have a lot of fun with her.

Once I was on the computer in the room she stays in while visiting. I said hello when she walked in the room, but apparently she did not hear or see me. A few minutes later I looked up, and she was undressing by the bed.

In my deepest and sexiest voice, I said, "Hello there, Alice." She screamed, grabbed her cloths, and yelled "What did you see?' I responded, "I'm not exactly sure what I saw, but is sure needed ironing!"

One day I came in from a run. Alice said she was impressed I was running the marathon, and asked how far I had just gone. It was 10 miles. She then said I needed to slow down, or I would complete the miles early. That is when I realized she thought the 26.2 miles was the total miles run over the 4 months of training.

I explained that the training was about 545 miles, and that the 26.2 was a single race at the end. Her response was, "26 miles, you mean all at once...all in a row!!! Now that's just plain STUPID!"

Right now I'm sitting in a chair with my legs propped up, after finishing 12 miles. Sometimes it does feel stupid. Sitting here, I am also thinking about Alice, who passed away this week from cancer. And I am also thinking about our the battle with childhood cancer.

How do you beat childhood cancer?

I believe it is done the same way you beat every other big giant hairy audacious challenge. Just like the marathon, we must be relentless. Never stopping. Attacking on every level. Day after day, mile after mile. Never quiting, never compromising. Even to the point of stupidity, and beyond. Refusing to lose. Fighting to win. Signing petitions, raising funds, running marathons, shaving heads, selling lemonade. Everything. Everyday, all in a row.

Here is the truth...The cure is out there. And every generation, prior to ours, has failed to find it. I find that very exciting. It means the victory is up to us. We have the opportunity to finish the world's greatest battle, the #1 disease killer of our children. And all we have to do is act. All we have to do is fight on every level. Every day, all in row.

As Orville Wright said, "Isn't it astonishing that all these secrets have been preserved for so many years just so we could discover them!"

We can do this. We can find the cure, and save our children. Why does this matter? Well, there are 46 new reasons everyday... 46 new children diagnosed everyday. Here are 4 of them.

Christina O'Brian is about to turn 18, and is fighting her 3rd battle with bone cancer. Through each relapse, she has remains always cheerful and positive. Recently she said, I am so happy to be where I am, and so glad I have had to fight to get here. Who doesn't have ups and downs growing up....Mine just had some chemo involved."

Sam Bish is also fighting bone cancer. Soon after having his leg removed, he learned the cancer had spread further. Sam courageously went back into treatments and started all over. Last week Sam was scheduled for his final treatment, only to find the cancer have again spread into both lungs.

Matthew Barr is 4 1/2, and battling relapsed brain cancer. Due to several reasons, treatment options are very limited for Matthew, and a cure has not been found. But Matthew continues to defy the doctors and beat the odds.

Faith is home with her mom and sisters, under the care of hospice. She continues to fight cancer on every level. As she began to lose her ability to speak, she started learning sign language...so she could continue to tell her mother "I love you".

Never Stop. Always Fight To Win!

Team in Training update: I have run 183 training miles. Only 363 miles remaining to the starting line. If you would like to support my run for cancer, go to KyleRunning.com

The 4th of July

2010-07-04T11:32:00.005-04:00

Bob Piniewski is a dear friend of mine.

And, although it has been a wonderful honor to know Bob, I sincerely wish our paths had never crossed. You see, our paths crossed for only one reason. Our sons, A.J. and Tyler, were both healthy and athletic teenagers when suddenly diagnosed with the same aggressive cancer.

Tyler is now cancer free. Some people have told me that I need to move on. They say I have become obsessed, and need to leave the cancer world behind. I really don't like the word "obsessed". I prefer "re-focused". You see, I know what cancer did to Tyler, and how hard he fought. And I remember the battles with the medical, insurance, and government establishments.

And I know something else. The same courage, fight, and strength went into A.J.'s battle. But A.J. did not survive. There are no promises or no sure fixes. The only answer is for all of us to fight, for all of us to stay focused.

At the 4th of July celebrations, take some time to look at all the kids. Try counting them. And then understand that 1 in every 300 will be diagnosed with cancer. The truth is that there is a cure. We just need to find it. We just need to stay focused. Actually, as I think about, maybe we simply need to become a little obsessed.

I took the following directly off of Bob's website this morning. I could not agree with him more...Today is the Fourth of July. Our country's birthday. And, thus, the start of our government.

What do you think our Founding Fathers would say about our country's priorities with regard to cancer funding for research? Would they ask why we don't protect children first?

Surely they would want to know why Congress won't fund the annual $30 million authorized by the Carolyn Pryce Walker Conquer Childhood Cancer Act, wouldn't you agree? And please, the "these economic times" excuse just wont cut it. Not when they see that projects like the following are fully funded, even though most satisfy at least two of these criteria:

• Requested by only one chamber of Congress;
• Not specifically authorized;• Not competitively awarded;
• Not requested by the President;
• Greatly exceeds the President’s budget request or the previous year’s funding;
• Not the subject of congressional hearings; or
• Serves only a local or special interest.

$29,992,000 by Senate Appropriations Committee Ranking Member Thad Cochran (R-Miss.) for 27 projects, including: $4,000,000 for the Jamie Whitten Delta States Research Center, Stoneville; $1,500,000 for Berryman Institute, Jack Berryman Institute, Utah and Mississippi Agriculture and Forestry Experiment Station; $1,002,000 for Mississippi Valley State University, curriculum development; $939,000 for the Agricultural Wildlife Conservation Center; and $231,000 for e-commerce research, because no one knows how to go online.

$61,600,000 for 30 projects by Senate CJS Appropriations Subcommittee Ranking Member Richard Shelby (R-Ala.), including: $14,000,000 for the Cooperative Institute and Research Center for Southeast Weather and Hydrology at the University of Alabama; $6,000,000 for six projects for the Marshall Space Flight Center in Huntsville; $1,000,000 for the Tools for Tolerance program at the Simon Wiesenthal Center in Los Angeles,California; $250,000 for a wireless area network for the city of Hartselle (population 13,888); $200,000 for the Cherokee County Methamphetamine and Marijuana Reduction program; and $150,000 for Zelpha’s Cultural Development Corporation for the University of Alabama’s After-School Delinquency Prevention program

$93,900,000 for 25 projects by Senate Defense Appropriations Subcommittee member Robert Byrd (D-W.Va.), including: $10,000,000 for four earmarks for the Joint Interagency Training and Education Center; $8,000,000 for the Smart Sensor Supercomputing Center; $7,000,000 for the Robert C. ByrdInstitute of Advanced Flexible Manufacturing Systems [according to a February 28, 2010 herald-dispatch.com article, “The Robert C. Byrd Institute for Advanced Flexible Manufacturing (RCBI) is joining forces with Cabell County Career Technology Center (CCCTC) to offer evening welding classes to the Tri-State Area. It’s part of an effort enhance the pool of skilled workers available to industry

$7,690,000 for 14 projects by Senate Majority Leader Harry Reid (D-Nev.), including: $2,000,000 for construction at the California National Historic Trail Interpretive Center; $1,700,000 for the Water Research Foundation (at the end of 2007, it had a fund balance of $17 million); $350,000 for Lahontan cutthroat trout; and $200,000 for the Lincoln County Courthouse, Pioche. According to the Pioche Chamber of Commerce’s website, the city “enjoys old-west charm, mild summertime temperatures, fine trout fishing, hunting, and some of Nevada’s most scenic state parks. Pioche is an old town by western standards, with many of the buildings predating the turn of the 19th century. We are far enough from the beaten track to escape the blatant commercialism that has plagued many tourist towns, but yet we do have enough facilities to handle the modest summer crowds. Boot Hill, the million-dollar courthouse, the Thompson Opera House, and the town museum are must stops for visitors interested in the town’s past.”

$1,000,000 by Senate appropriator Mary Landrieu (D-La.) for the Sewall-Belmont House in Washington, D.C., which holds private events, offers catering, and is visited by tourists who are encouraged to leave donations.
(Source - Citizens Against Public Waste - 2010 Congressional Pig Book Summary)

Maybe they would say something like this....

“Leave no authority existing not responsible to the people.”
- Thomas Jefferson
“He that is good for making excuses is seldom good for anything else”
- Benjamin Franklin
"As much as I converse with sages and heroes, they have very little of my love and admiration. I long for rural and domestic scene, for the warbling of birds and the prattling of my children”
- John Adams
“Ninety-nine percent of the failures come from people who have the habit of making excuses.”
- George Washington
“The truth is that all men having power ought to be mistrusted.”
- James Madison
“A promise must never be broken”
- Alexander Hamilton

Well, they have. Broken a promise made to sick children. So, beyond voting 'em all out in the upcoming elections, let's raise funds ourselves.

Today, as you attend parties, visit friends, or meet someone new, please tell them a bit about childhood cancer. How it remains underfunded and under-recognized as the #1 killer disease of our children today. That's OUR children.

Chances are 1 in 300 that any child will be diagnosed with cancer before age 20. Chances are 20% that child will not survive five years. Of the 80% that do survive, 60% are impacted by the cure; resulting in long-term health risks included secondary cancers, major organ damage (not to mention minor organ damage), infertility as well as social and learning issues.

Today, simply ask one person to remember 46mommas.com. They can donate to this wonderful group of moms who will shave their heads in support of St. Baldrick's, funding childhood cancer research. So that in every future Fourth of July celebration, each 300 out of 300 of America's children can raise the flag...

And please....“Don't say you don't have enough time. You have exactly the same number of hours per day that were given to Helen Keller, Pasteur, Michaelangelo, Mother Teresa, Leonardo da Vinci, Thomas Jefferson, and Albert Einstein.” - H. Jackson Brown

Kyle Running

2010-06-20T09:43:00.004-04:00

I will like to ask for your support.

I will be running with Columbus Marathon to raise money for the Leukemia Lymphoma Society. 545 training miles, plus the 26.2 mile marathon at the end. You can follow my progress, and well as donate to the cause, by going to KyleRunning.com

I got 88 miles down, so only 457 miles to the starting line.

Yesterday was the 7 mile run. I was feeling a bit sore, and decided to walk a little. Then I thought about Christina O'Brian. At 18 years old, she is fighting through her 3rd battle with cancer. I thought about everything she has been going through. Her teenage years in and out of the hospital, the separation from friends and school, the relapses, and the struggles to find the right chemo. And through all of this, her spirit and determination have never faltered.

In the middle of a struggle most of us could never imagine, Christina said, "I can not believe this year and all of the things I have got to do this year. I would have never guessed in my wildest dreams that I would be a hockey goalie who has been in what is going to be my 2nd fashion show and be starting college. I am so happy to be where I am and so happy I have had to fight to get here. Who doesn't have ups and downs growing up....mine just had chemo involved. "

Christina - The Fighting Goalie!

I think of Tyler and Christina, as well as Matthew, Sinjin, Sam, Brett, Mason, Kylee, AJ, Ryan, Christian, Chase, and so many others. How can I ever stop? What obstacle in my life is greater than the ones they have battled?

I'm sorry that it sounds a bit cliche, but it's true...these young people have taught me the true purpose and meaning of life.

Godspeed, and always fight to win!

GRADUATION!

2010-06-11T15:37:00.007-04:00

Graduation Day!

Tyler graduated from High School! On time, with his classmates. As they said during the graduation speech, Tyler's FIGHT TO WIN spirit was the defining message of the class of 2010.

Doctors said this day would not happen. They said the time he lost from school, and the volume of chemo pumped into his body, would make it impossible for him to graduate on time. They actually said it would take a year or two before he would be able to attend classes full time.

But as with everything else involving cancer, Tyler proved them all wrong. He beat cancer, returned to school, returned to sports, caught up with his class, and still nailed the grades and ACT scores to get accepted into The Ohio State University.

His class asked me to speak at the high school Baccalaureate ceremony. I meant every word when I said, "It is an amazing thing to realized your greatest hero and inspiration in life is your own son." This is Tyler's day, and he has earned it.

And as inspirational as Tyler's victory has been, it must be remembered that it was not done alone.

When Tyler came home between chemo treatments, his classmates surrounded our home, screaming "FIGHT TO WIN!"
During the Sweetheart Dance, the school unanimously decided to eliminate corsages. Instead they gave the money to Tyler's fund, and worn Tyler's FIGHT TO WIN wristbands. The students told me, "Flowers die, and we decided to spend our money on life...so it is going to Tyler".
The high school hockey team dedicated a championship game to Tyler, and presented Tyler with the winning puck. as a fund raiser they raffled off a jersey signed by the Blue Jackets. The winner of the raffle handed back the jersey, saying "Give it to Tyler".
Hundreds came out to support Tyler at Laps for Love. Jim Tressel sent an autographed football signed by the team to be auctioned. the winner of the football also handed it back to me, saying, "Give it to Tyler".
Kids asked for gifts to Tyler in lieu of birthday presents. There were basketball, softball, baseball, and dodge ball tournaments.
And I will never forget the day a caravan of kids with shaved heads came to the hospital to shave Tyler's head. Forever embedded in my heart is the call I received, "We are here because this is our responsibility. We will never allow cancer to have the privilege of taking Tyler's hair. He is our friend, and cancer gets nothing from our friend."

So as we mention our friends still in the battle, please remember that this battle can not be won alone. Please remember our friends. The victory is not yet won.

Christina O'Brian

Matthew Barr

Sam Bish

Alexis Agin

Faith Pruden

Going For Silver & Cap City

2010-04-28T22:19:00.008-04:00

GOING FOR SILVER!

That is my slogan for the Columbus marathon.

My first (and so far only) marathon was in 2008. I ran the Columbus Marathon in Tyler's name. One of the hardest parts of that race was the halfway point. I was surrounded by a large group running the 1/2 marathon. From 10 miles on, they were yelling "Almost there! Almost done!" As we got closer, I saw their finish line off to the left. Straight ahead was my path, up the hill for an additional 13.1 miles. Every part of me wanted to just turn left and finish the dumb race.

As I looked around, the streets were lined with people who had already finished the 1/2 race. They were all walking around in those silly looking silver blankets they give you at the finish line. I really wanted to be finished and wrapped in on of those blankets. Those blankets started looking really cool. So for the next 13 miles, that became my main focus. I just imagined myself walking around in my super cool silver blanket, successfully completing the full marathon.

I began falling apart at mile 22. But I keep pushing and pushing, picturing myself in my silver victory blanket. Then it happened. I saw the finish line. 26.2 miles. I crossed the finish line to victory! But there was a problem. A very big problem. They had run out of those stupid silver blankets! I went to one of the U.S. Marines working the finish line. I told him I really, really wanted a silver blanket. He offered me a bagel and a banana. It's really not the same thing.

So that the story behind my slogan. I will be running the Columbus marathon again. When I ran last time, they asked me what my goal was to finish the race. I said, "Alive". This time I have a new goal. Finish the race before they run out of those stupid silver blankets! Going for the silver!

The race is in October. Training officially begins next week. To kick it of, I will be running the Cap City 1/2 marathon this Saturday.

But never forget why I am running. I will be joining Team and Training again for the Columbus marathon. It is all to raise funding and attention to these kids fighting cancer. Tyler is doing great, now 18 months in remission. But there are still many young people fighting their courageous fights. Please keep our friends in your thoughts and prayers.

Christina O'Brian Matthew Barr

Sam Bish

Faith Pruden

18 - A Life Worth Living

2010-04-16T14:00:00.001-04:00

Tyler turned 18 this week. Absolutely amazing. Soon he will be graduating high school, and soon joining his brothers at The Ohio State University.

I've been thinking back on when our older sons turned 18. Life was good four years ago, when Brandon turned 18. With a bit of luck and a bit of hard work, life had been good to us. We had our health, and about everything else we wanted. In my 40's, I had just moved into a semi-retirement to spend more time with the family. We celebrated Brandon's 18th with a SCUBA diving trip to Maui.

Two years later, as Travis turned 18, all of that had changed. Our world was in turmoil. Tyler was 5 weeks into treatments and the news was not good. The cancer was far more advanced than previously thought, and growing quickly. Burkitt's has broken out of Tyler's abdomen, and into his chest cavity. Leukemia was in 85% of his bone marrow, and working into his central nervous system. Nothing in my life had prepared me for this fight. Everything I have worked so hard to achieve was useless.

And everywhere we turned, the news was bad. Nathan, the first teenager we meet at Children's, had recently passed away. Christian Barker, whose family I admired for their incredible fight, had just lost his battle. Rob Kemp and Brett Workman had both relapsed, and were struggling right down the hall. All the skills I had learned in the past were worthless as I tried to save my son. The past successes were of no value.

I hated what Tyler was going through. I wanted it over, and him home and healthy. I desperately wanted our life back. But I also realized these young people were changing me. I was in awe of their strength, courage, and compassion. Their love for life was incredible. Through all the struggles, these kids were living the most inspiring lives I had ever witnessed.

Slowly, I began to understand the difference between a life of success, and a life of significance. As 18 year old Miles Levin said, "The time I’ve had has been enough—time enough to make the world a better place for having been here." The young people achieved more good, and impacted more people, than i had in 40 years. It is impossible to meet these kids and walk away unchanged. I guess the only optional part is what I am going to do with that change.

So here we are today, 2 1/2 years gone by. Tyler is now 18. He is cancer free, and doing great. Brandon, Travis, and our youngest Erik, are all doing very good.

And I started my business back up. Our finances were wiped out with medical bills (chemo ain't cheap...just in case you were wondering). But I was bored with work. I couldn't focus on the petty issues, while thinking of the life struggles back at the hospital. So much of what I was doing seemed so irrelevant.

At night I would reflect on the day, and wonder what I accomplished. I thought about the kids who did not live to see this day, a day I was so freely given. Why was this day taken from them, but given to me? Did I pay back the privilege of receiving this day? Did I make an impact?

Finally I figured it out. Here's the truth. There is a cure to pediatric cancers. It's out there, and we can find it. We just need more energy and funding focused on finding it. And here's another truth. The only person I control is me. Waiting for "someone" to do "something" is a cop out. The only way to live life is to say, "If it's going to be, it's up to me."

We all have a purpose, a great goal that we are here to achieve. And those goals require funding. The purpose of life is to make it worth living, to accomplish the dreams and goals we were created to achieve. The purpose of business is to fund that purpose. It is a tool to help us achieve our goals. The job must work for us, otherwise it will enslave us.

So I can now guide my sons in their carriers. And how to help my staff, and serve our clients and customers. And rewrote our business plan, to reflect why we exist. On the front cover is printed our greatest purpose.

A job worth having, to fund a life worth living.

A business worth owning, to fund a cause worth fighting.

Where this will lead us, I do not know. All I know is this: Life is to be lived as a daring adventure in pursuit of our purpose. Always fighting to win. Life is precious. Always live it well.

Tyler had more scans and blood tests today. Everything was great. Cancer free, and he continues to improve from the damage resulting from treatment. Great news all around.

Madeline Wareham went in ahead of us, and Matthew Barr after us. it is always great to see them.

Please also remember in your thoughts and prayers Christina O'Brian, Sam Bish, and Faith Pruden.

Matthew

Madeline

Sam

Faith

Christina, the fighting goalie.

letter to President Obama

2010-04-08T21:25:00.003-04:00

CureSearch for Children’s Cancer and PAC2 have invited us all to Take Action today!

We are all painfully aware that cancer is the leading cause of death in children, and yet it receives a fraction of the funding of adult cancers. Many of you are working hard to raise awareness to support research and programs that benefit children with cancer and their families.

Let’s pull together to get the federal government and President Obama to commit to doing their part along with us. Here is what you can do today along with thousands of others!

Send a hand written, “in your own words” letter to the President.

President Barack Obama and First Lady Michelle Obama
1600 Pennsylvania Ave., NW
Washington, DC 20500

Dear Mr. President and First Lady, I am writing to you today about childhood cancer.…(please use this introduction to trigger “key word searches”)

Tell him your story!

Ask him to include funding for childhood cancer research in his FY 2012 budget. Remind him that the Caroline Pryce Walker Conquer Childhood Cancer Act (PL110-285), which passed unopposed in 2008, authorizes $30 million per year for childhood cancer research and direct service programs.

Let him know that September is Childhood Cancer Awareness Month and ask him to recognize the 40,000 children who are battling cancer today, the thousands of children whose lives are lost to cancer every year, and the 35 children who are diagnosed with cancer every single day.

Remind him that this issue is significant enough in the minds of Americans to have been voted into his Citizens Briefing Book as #5 in America's Health Care Concerns.

Hand-written notes carry more impact. Pictures may help. We will continue this for the next 30 days, and frankly not sure if asteady stream of letters or a big blast on a couple days is best. We think a steady stream seems less orchestrated.

If we all participate,take action, just like those kids do......we can get this in September.....

The Dad Factor

2010-03-24T15:31:00.019-04:00

I love being a dad. It is the greatest thrill in my life.

Our family is about as traditional as it gets. Kathy is the comforter, the one who teaches the love and joy. I teach our kids the confidence to strive toward new thrills and adventures. We discuss dreams, giant ones, and strategize on how to achieve them. I absolutely love my role (I had great examples in my dad and grandfathers).

I know many moms also play this role (and do a great job). But dads bring a critical factor to the family. There is a burning desire for adventure and challenge built into the DNA of every dad. Our vacations are shark diving, repelling, whitewater rafting, bungee jumping, and chasing the NBA Finals. Always go for it, never say die. As Helen Keller said, life is either a daring adventure or it is nothing at all.

Our house, yard, and driveway are always full of baseballs, basketballs, footballs, soccer balls, and golf balls. Once Kathy was asked what it was like in a home with 5 boys. She answered, "Everywhere I look I'm surround by balls!"

When Tyler was diagnosed with cancer, Kathy and I quickly fell into our respective roles. Kathy worked tirelessly to comfort Tyler, trying to ease his suffering. She handled the many details of his care, praying and trusting in faith God would handle the big picture.

And I went to war, seeking to save his son for this evil beast called cancer. I searched for answers, demanded information from doctors, and sought out a multitude of advisers. I sat up all night, strategizing our game plan and calculating measurable goals and multiple "plan B's". I also had faith, but mine was that God would give us the strength to finish the fight. Our roles were very different, but both very important.

In the hospital I noticed that the moms always out numbered the dads. I understand part of it was work obligations, but I believe there was something more. The hospital welcomed those providing comfort to their children. But it seemed to push aside those seeking to participate more in the decisions, searching for deeper answers and second opinions. We were encouraged to assist the nurses, but discouraged from "wasting" the doctors time. The message was "Comfort your child, but stay out of our way and let us do our job".
I spoke with other dads, and many felt helpless, pushed aside and alienated by a system did not want their participation. But none of that matters. We must bring our strengths to the fight. We must be involved in the strategy. We need to step in and fix things, solve the problem, fight the war. In our fight I hit many obstacles. But I was strengthened as I watched the courageous fight in the dads of Christian Barker, AJ Piniewski, Mason McLeod, Zac Mason, and so many others. Although not always welcomed, the dad factor is critical.

And now we are done...Tyler has beaten cancer. But as I look beyond the hospital, I see that the moms also outnumber dads in fighting for a cure. The moms are often leading the charge, raising the money, running the events, spreading the message. Why is that?

I think it could be that the dads still feel out of place and alienated. We had a recent fund-raiser to benefit the cutest 4 year old you have ever seem. He is fighting a brain tumor with few clear options for treatment. Everyone just wants to hug him and help in some way. But it is primarily the moms that offered the most help, and have continued to call and ask how he is doing. They selflessly gave their support without question. But many of the dads seemed to struggle with things out of their control, having no clear solution or direction.

At the same event we also raised money for new TV's in the cancer rooms at Children's. That is where the dad's jumped in. We explained the need of the kids, weeks in isolation, unable to play their games. The TV's were a tangible and measurable solution to a specific problem. The dads rallied to fix the problem, achieving direct and immediate results. That is what we do best. Facing risk and challenge is not a problem. But we need a game plan. That is the place we feel most comfortable.

The fact is that, in fighting childhood cancer, we need both approaches. We need moms. But we also need more dads, standing up and fighting in the unique ways that dads fight. We need the dad factor.

As dads we need to clearly describe the problem, and articulate a plan on how we fix the problem, a strategy for success. What are the specific results of the money raised? What is the game plan strategy, the business proforma? What are the specific measurable results? That message would be much stronger if we have more dads. As dads we must create a message clear enough to be communicated at a business lunch, or over a beer at a sports bar. It's how we function. We will face any obstacle, fight any battle. But we need to be active participants in getting closer to the goal. It is up to us, and the dad factor is critical.

During the 1992 Olympic games in Barcelona, Derek Redmond was favored to win the 400 meter sprint. He had trained his entire life for this moment. But several seconds into the race, he collapsed with a torn hamstring. In agony, he picked himself up, pushed away the Olympic officials, and began to hopping to the finish line. Then, in the distance, someone came running out of the stands and out onto the track. It was Derek's dad, the man who spent countless hours with Derek training for this very moment.

His dad did not tell him to stop, did not pick him up or carry him. Instead his dad walked beside him, supported him, and helped him finish the race. And in the end his father let go, allowing Derek to cross the finish line on his own. That is the dad factor. That is what we do best. It's how we are made and why we were created. And we need that factor in the war on childhood cancer.

Faith

2010-03-19T10:00:00.006-04:00

Faith Pruden is a beautiful 6 year old girl. She was perfectly healthy until last month, when she was diagnosed with brain cancer. Local doctors have found no options for treatment within their protocols. But Faith and her family continue to fight to win, never losing hope.

But I guess that is what faith is all about. Faith is a verb, and it requires action. The answers are there. The fact that they are hidden only means we are to find them. Keep searching, keep fighting, keep believing. We are all created for a special goal. God delights in seeing that life from us.

When we walk to the edge of all the light we have and take the step into the darkness of the unknown, we must believe that one of two things will happen. There will be something solid for us to stand on, or we will be taught to fly. - Patrick Overton

Christina O'Brian is back in the fight. And with Christina in the battle, I can say I am glad I am not the cancer. She will destroy that cancer like she did the first two times. Always fight to win.

And thanks to the Ryan Salmons Foundation, these kids are getting all new TV's in their rooms. While at the ceremony I spoke to a young man who was 15. he say in his wheel chair, bald head and bright smile. A lot of memories came pouring back. I told him Tyler was also 15 when diagnosed, and is now doing great and was recently accepted to OSU. I then made him promise to harass nurse Jodi at every possible opportunity.

I really would have loved to talk to him more, got to meet his family. But it was hard to watch him sitting there. The memories came back so strong. And as I walked away I thought about the parents that had different outcomes than we did. It is incredible courage they show when they walk back into the hospitals. Bob Piniewski flying to Texas to see Tyler and I while at MD Anderson. Brad Salmons presenting the TV's yesterday, on the one year anniversary of Ryan's relapse. Sandy Barker, Andrea Woods, Sheryl Paulie, and so many others who continue to battle in spite of the memories. Always refusing to lose. Always fighting to win.

There is a cure for childhood cancer. If it were easy to find, it would have already been found. This one is hard, and hard challenges take a lot of effort. Impossible ones take a little bit more. This one has been left to us. This is our opportunity, our time. These kids deserve nothing less than everything we have to give.

So visit a child. Or support a family. Or shave your head or run a race. Whatever works for you. Just fight the fight. We can win. We can save our children.

If you would like to support Faith Pruden, you can do so on their family web site, http://www.helpfaith.com/

Gasparilla - Tampa Marathon

2010-02-28T12:23:00.009-05:00

I ran Gasparilla today, the Tampa marathon. It's been difficult to train in Ohio this winter. A week ago I realized I was no where close to being ready for the race. I was out of condition and behind on training. The longest run I had done all winter was 7 miles, and it about killed me. So clearly the only logical option was to send in the registration money and go for it (well..maybe not logical, but I really wanted on of their cool T-shirts).

It was a hard race. Before it started, I told a friend that my only goal was to cross the finish line alive. He responded, "Don't worry. Very few people die running...you usually pass out first." Thanks. I appreciated the uplifting words.

During the race, I felt like a guy a I saw years ago. It was while helping at a marathon water station around mile 23. This guy comes running along, eyes closed and face grimacing in pain. He was repeating, "Help me Jesus, help me, help me Jesus." I jumped out in front of him and yelled, "Water!" He opened his eyes, hugged me, kissed me, and said "Thank you, Jesus!" He then took the water and keep running, saying , "Help me Jesus, help me, Jesus."

But in the end, I did it. It was a tough, but nothing that couldn't be fixed by an ice bath and a hand full of Tylenol (and maybe a few beers). A friend meet me at the finish line, and pointed out that a guy with no legs had finished ahead of me. Thanks for pointing that out.

The hardest part of the race was that several mile markers were missing. It was impossible to accurately know where you were in the race, or how far it was to the finish line. It is incredibly difficult to keep pushing when you are unsure of your progress or how much longer you will need to battle.

And I believe that this is the worst part of cancer. These kids keep pushing with every ounce of their body and soul. And their race does not last a few hours. It goes on for months or years. They search for signs of their progress. But the finish line is elusive, always moving. Still, they give all they have to give. They refuse to lose, racing on and on. Finally the finish line is reached. But far too often that line is only an illusion. The cancer relapses, and the race continues. These kids deal with that reality every day of their life.

As I started the race, I wrote three names on my shirt. They are three of my friends. They are back in the race, running with courage. Please remember they in your thoughts and prayers.

Chistina O'Brian fought cancer. She ran the race, and won. But just a the celebration was about to begin, she was thrown back with a relapse. A return to all the unknown. So Christina did what she did before. She stood strong, continued the race, and beat cancer again. She refused to let cancer change her life. In spite of having no hair, she attended her school dance...and her beautiful face and smile filled the room. Then, last week Christina relapsed again. So now what? Now she does what she always does. She jumps back in the race. And will win again. You can bet on it.

Matthew Barr is 4 1/2. He has been in the race most of his life. He also has won, and he also then relapsed. Yet through it all, his beautiful spirit continues to shine through his bright eyes and wonderful smile. Just the sound of his quiet sweet voice can melt your heart. Watching his calm confidence, it's hard to imagine the incredible battle this young man has been fighting. Always fight to win.

Sinjin Andrukas also has Burkitt's Lymphoma. Doctors said hope was gone, that survival was impossible. By Sinjin replied, "It's easy. Just change IMPOSSIBLE to I'M POSSIBLE!" Sinjin proved who was in charge, and beat cancer. He has destroyed the cancer, but treatments can cause a lot of problems. Sinjin is now back in the race, as his body fights all the damage from the chemo and transplant. Sinjin has given us all a priceless gift. He has proven the nothing in impossible.

There is nothing impossible to him who will try. -Alexander The Great

It is our duty to proceed as though the limit of our abilities do not exist. -Pierre Teilhard de Chardin

Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert. -Isaiah 43:18-19

The Lord is with you, mighty warrior. -Judges 6:12

We have two options, medically and emotionally: give up, or fight like hell. -Lance Armstrong

“But whatever happens,” he said, "I will run.” -2 Samuel 18:23

Only those who attempt the absurd will achieve the impossible. -Escher

What we need is more people who specialize in the impossible. -Teddy Roosevelt

Hard things take time to do. Impossible things take a little longer. -
Percy Cerutty

Kirsten Schlarman

2010-02-22T23:26:00.004-05:00

In the last post, I mentioned a few kids to pray for. One of them was 14 year old Kirsten Schlarman.

I did not really know Kirsten. I spoke briefly with her one time while Tyler was in the cancer clinic for blood counts. Although I did not know her, I heard others talk about her. Her beautiful eyes and bright smile. And her loving family. Kirsten Schlarman, 14 years old, passed away while surrounded by her family.

Never stop fighting. There is a cure. We just need to find it.

Fight to Win

2010-02-15T18:37:00.005-05:00

Two year old Ted Drummond has been fighting cancer for 18 months. The he contracted septicaemia, and his weakened organs began to fail. The doctors said the end was coming soon. The family kissed Ted goodbye and left the room, as doctors began a medically induced coma to ease his suffering.

The family waited in the hallway. Minutes later they heard some noise and commotion in the room. Then the doctor came out, knelt down on the floor and said "He's a feisty little boy isn't he?" Then the doctor explained, "I was putting a tube in his nose and he opened his eyes and punched me in the face and shouted 'No!''

It appears little two year old Ted still has a lot of fight, regardless of a doctors prognosis.

This happened 10 months ago, and little Ted continues to fight to win. He has undergone four more cycles of chemotherapy, and is beginning to improve. The cancer is still there, but Ted refuses to lose. The little bruiser is now even taking swimming lessons. He intends on participating in a swim-a-thon charity to raise awareness of childhood cancer.

Ted's mom said, "Ted lights up the day for all those who meet him and he has an ability to draw people close. Despite his age, he takes his medication and treatment with no fuss and has the ability to turn even that into a game or something to learn."

Always fight to win!

And everywhere you look, you find more kids. They always fight. They refuse to lose. As my friend Stef Tarapchak said, "I'm not afraid to die. I'm just not ready!"

There are 1,000's of kids battling cancer right now, fighting for their life. They continue to fight. They refuse to lose. Here are just a few. Please keep them in your thoughts and prayers.

Matthew Barr

Kirsten Schlarman

Sam Bish

Nicholas Reamer

Spencer Shores

Truman Hendrick

Laps For Love 2010

2010-02-11T11:34:00.008-05:00

Laps For Love

In spite of the weather, we had a great turn out!

Thank you everyone who supported these families and their fight against childhood cancer.

Our beneficiaries were...

Matthew Barr, walking his "laps", with mom, dad, brother, and all the Washington Township fireman who came out to support them

Madilyn Zimmerman, who wheeled all her laps, along with her parents and brothers.And The Ryan Salmons Foundation. Check out Brad Salmons with the new Ryan Salmons Foundation logo. The top of the heart makes the #3, Ryan's high school and Blue Jackets hockey number.

And there was more...

Brutus Buckeye was there to keep the party moving!

And Stinger, chasing everyone around

And the Buckeye Guy, always there to help out.

Laps For Love Tonight!

2010-02-06T09:12:00.005-05:00

Please come join us from 8pm-10pm for Laps For Love!!

Ignore all the snow, WE ARE STILL ON! roads are great, and the Dublin Recreation Center is plowed and open!

Join us to support those running laps...
Join us to compete in the basketball hoop contest...
Join us to participate in the raffles, silent auctions, and live auction...

We are giving out over 35 items, including...

Autographed items from Jim Tessel, Michael Redd, Jack Nicholas, Jack Hanna, Brady Quinn, James Lauranitis, Marcus Freeman, several OSU players, Blue Jackets players, and baseball, golf, and tennis stars.
Tickets to College and pro sporting events.

Tickets to Columbus Zoo, The Wilds, and Zoombezi Bay.

Gift Certificates to several restaurants, retail stores, and a hair salon.

It's free and it's fun! Come join us, along with Brutus Buckeye and the Stinger. Everything else is closed or cancelled, so why not come out and help a kid!
All donations are deductible, and go to help the causes of three great kids!

Meeting God

2010-02-02T17:13:00.022-05:00

It has been said that angels walk on the earth, and that even God will appear to us in various forms. When I first heard that said, I wondered what God would look like. What about Jesus Christ? I wondered about eyes that faced incredible suffering, while communicating compassion and joy. A voice that carried the sound of tremendous fight and amazing love. What would that look and sound like? I often wondered.

AJ's dad pointed out that the Bible uses the word "Awesome" only one time, and it is referring to God. It really puts into perspective a word that is used so freely these days.

I have meet the most amazing kids in this journey with cancer. These young people are awesome, and it is true in every sense of the word. They look into the abyss and respond with courage and hope. Through all the fear and pain, they communicate with laughter, joy, compassion, and love. Meeting these kids, I truly believe there are times that I have looked directly into the very face of God. Listening to these young people, I have heard the very words of God.

Listen to their words...

I will fight, and I will win. Because whenever I fight, I always FIGHT TO WIN!--Tyler Alfriend, now 16 months in remission.

I'm still fighting. I'm in a window that should be closed, but I'm still fighting. Why turn over and give up when you can go out and enjoy life? People come up and tell me to keep fighting. It's awesome. Those things keep me happy and smiling and moving along. - Ryan Salmons, one month before passing away.

It's easy. Nothing to it. Just change the word IMPOSSIBLE to I'M POSSIBLE. - Sinjin Andrukates, after being told there are no remaining treatment options. Sinjin is now 12 months in remission.

Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME! - Jake Silberg, written in magic marker over his bed while receiving chemo. Jake is now 18 months in remission.

When someone gives up. Don't ever give up. Always follow your dreams.-Brendan Foster, when asked what makes his sad. Brendan passed away two days later.

If you have learned anything from me through all of this, do something with it to make a difference - to make things better. -Melissa Sengbusch, six months before passing away.

Dying is not what scares me; it's dying having had no impact. I know a lot of eyes are watching me suffer; and -- win or lose -- this is my time for impact. - Miles Levin, one month before passing away.

My life is more amazing than I could ever dream. - Andoni Schultz, battling cancer since age 3, upon his acceptance to Notre Dame University.

I can fight. Why would they tell me to quit when I'm willing to fight? Please do not give up on me. - Brett Workman, after being moved to hospice care. Brett passed away three weeks later.

I must stay positive. My mom is having a hard time. She is the toughest person I know, but she is tired. Whenever I wake up she is right there. She holds my cold hand and my dog lays on my cold feet. Please say an extra prayer for the miracle. There are so many things I want to do with my life. And I do not want my mom to be alone. --Josh Prunsky, 4 weeks before he passed away.

It was my desire to make a difference, and I tried to do that in the opportunities that were given to me. There was so much more I wanted to do. Now you can pick up where I left off and serve so many others. Hear this plea and respond to it. This is your friend who asks you to accept this challenge. Do something meaningful in your life. --Brett Gosnell, letter to participants in a fundraiser for him, after learning he would live to see the event.

.
And look into their eyes...

Make video montages at www.OneTrueMedia.com

Then and Now

2010-01-29T15:14:00.007-05:00

Sometimes it's hard to imagine it has been two years. Above was Tyler's picture used for the Laps For Love event in 2008. It took us a few days to get a picture that Tyler was happy with. He just did not want to look "sick". Today, Tyler is feeling great. He is playing ball, preparing to graduate from high school, and will be attending the Ohio State University.

Next Saturday, February 6th, 8pm - 10 pm, at the Dublin Rec Center we will be having Laps for Love again. This time benefiting three kids. There will be live and silent auctions with autographed items from Jim Tressel, Archie Griffin, AJ Hawk, Brady Quinn, and several Buckeye and Blue Jacket players. Brutus Buckeye and Stinger with both be on hand. Those who want to run or walk laps can get sponsor forms here. www.AKidAgain.org/LapsForLove

If you wish to donate by credit card, go to www.AkidAgain.org/goto/Alfriend

Here are pictures from the first event in 2008, with Jack Hanna and Rick Smith.

Please come out Saturday, to support our friends:

Matthew Barr relapsed while preparing for his Disney World trip with the Make-A-Wish Foundation. Treatments have not been working as hoped, and insurance is exhausted. But the fight continues. I recall something Matthew's dad wrote when Matthew relapsed: "I know that as I go to bed tonight God will be my side, as I know that right now he is with Matthew and all of you. We still believe, and have not given up in this battle. It is far from over."
Madilyn Zimmerman is 7 years old, and one of the recipients of of this year's Laps for Love. But Madilyn has also become an aggressive fund raiser. She already has her fund-raising site set up(www.akidagain.org/goto/madilynsteam), and has set a personal goal to raise $5,000!

Ryan Salmons, our wonderful friend. 19 year old Ryan stood tall on the children's cancer floor, as he said "I Refuse to Lose!" Ryan's courage became such an inspiration the the Blue Jackets Hockey team signed him to a one day contract. His #3 jersey is still one of the best sellers on their web site.

Ryan passed away this summer, but his unstoppable spirit remains strong. Fulfilling one of Ryan's dreams, his dad started raising funds to purchase new TV's for all the cancer rooms at Children's Hospital. When the hospital staff suggested it would be easier to install the TV's in two years when the construction is completed. Ryan's dad responded, "Ryan lived his last year on this floor. Two years times 36 rooms? That is 72 kids like Ryan not benefiting from these TV's. I will not wait."
Laps for Love will be giving the remaining funds needed to purchase and install the new TV's in all the rooms in time for the winter Olympics.

The Face of Courage: Kids Living With Cancer

2010-01-24T11:12:00.003-05:00

Please check it out tonight on Nickelodeon, Sunday, January 24th from 8pm to 9pm

Cancer. When children hear the word, what do they think? It may be scary, but today, a diagnosis of cancer is not necessarily a death sentence. Nick News with Linda Ellerbee explores the world of kids who are living with cancer on The Face of Courage: Kids Living with Cancer, premiering Sunday, Jan. 24, at 8 p.m. (ET/PT) on Nickelodeon. The road these kids travel is not easy; it is pitted with fear, pain and loss. But also it is a road paved with hope, strength, courage and even humor. They have been where no kid should have to go, and they have survived to share their stories – and their courage – with the rest of us.

“All of these kids live as if the cancer were never coming back,” says Ellerbee, an 18-year cancer survivor. “Cancer is a part of my past. That‟s a fact. It’s a part of my present because I choose to speak about it, and for the same reason, it will be a part of my future. But it is not who I am. It is not who any of us is.”

Also: Running for Cancer
This year Laps For Love will benefit three of our friends. assisting Matthew Barr and Madilyn Zimmerman in their battles, and to fulfill the dream of our dear friend Ryan Salmons who passed away this summer. You can support my run by going to www.AKidAgain.org/goto/Alfriend Donations are tax deductible. The event was started two years ago to support Tyler in his battle with cancer.

I'm also about one month away from the Tampa Marathon. On advice from my trainer, I have backed off and will only run the 1/2 marathon (long training runs in the Ohio winters is difficult). But I will back for the full marathons in Cincinnati (May) and Columbus (October).

Fight to Win

2010-01-23T16:38:00.001-05:00

Hard to believe. It's been over two years since Tyler's original diagnosis. I was thinking of this while reading an interview with U.S. Admiral Stockdale in the book, "Good to Great". He was discussing his 7 years of torture as a Vietnam prisoner of war. The interviewer asked about faith, and how it helped people remain optimistic in difficult situations. Admiral Stockdale responded that it was actually the optimists who were the first to die. Not the answer I was expecting.

Stockdale said the optimist were the ones who said, "I will be rescued by Christmas", but then Christmas would come and go. Then they would say Easter, then Thanksgiving, then Christmas again. And each of those dates would come and go. Eventually, they would die of a broken heart.

Stockdale said he always had complete faith that he would survive, but he was also brutally honest about the realities he faced. He said, "You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

Two years and two months ago, we walked into Children's Hospital to find out why Tyler could not beat a "stomach virus". Within hours we were thrown into the horrific world of leukemia, lymphoma, spinal taps, chemo, ports, pic lines, TPN, PICU, blood counts, and PET scans. A world where every moment is filled with gut wrenching tragedy and awe inspiring bravery.

Kathy responded with a calm faith, her greatest strength. I responded with my strength, charging head first into war with the brutal realities. It has taken a long time for us to understand our different approaches (something we are still working through).

During one of the darkest times in this fight, someone told me that I needed to accept God's will. I find the concept absurd. I'm willing to bet that God finds it equally absurd. We are created with intelligence, passion, and a desire to make things right. I sincerely believe God has already given us what we need to save these kids. The rest is up to us. We must break out of our comfort zone and go to war. He tells us to "run the great race", and speaks of "great and wondrous plans" for our lives. Never once does He suggest we sit on the sofa and wait for everything to "just work out."

These kids fight with a passion that is indescribable. Their faith never waivers. The brutal reality is that their survival also depends on us. All of us. Not government, or non-profits, or pharmaceuticals, or health care reform. Us. You and me. Those other things might be tools that we use, but the fight is up to us.

Tyler is doing great. He is growing, getting stronger, and doing great in school. He is alive today because of a combination of incredible faith and incredible fight. Our entire community fought, with constant financial, emotional, and spiritual support. There were lines at the blood bank for Tyler. He is alive because of the many kids who had fought before him, and the thousands who fought for them. The decisions we made on his treatments were the result of advice from parents who had also fought this battle before us.

There are brutal realities with cancer. And we will never be able to change cancer. The only thing we can change is the fight. And when we fight, we must always fight to win.

On February 6th, we will be having Laps For Love to support two kids battling cancer, and fulfill the dream of one who did not survive. You can support them with your tax deductible donation by going to www.AKidAgain.org/goto/Alfriend

Laps For Love - 2010

2010-01-21T16:09:00.009-05:00

Two years ago we were at the hospital, and Tyler was receiving chemo. I received an excited call for Tracy Chambers, from my office at Keller Williams. She had woke up in the middle of the night with an idea, and worked through the morning putting it together.

She wanted to rent out the Dublin Recreation Center and have kids run laps. The kids would get sponsors for each lap, and the money would go to help us with all the medical bills.

It was a wonderful gesture. But to be honest, the community had already done so much for us. I questioned many would participate in another event. I was wrong. In fact, the community planned more events.

Tyler was home when the day arrived, but was not strong enough to be in public. So a few hundred students surrounded our home early that morning, standing in freezing temperatures and shouting "Fight to Win!"

At 8 AM a snowball softball tournament began. That was followed by more events, including a Dublin City Council ceremony declaring it "Tyler Alfriend Day". Laps for Love was scheduled to begin a 8 PM, after these kids had been running to back-to-back events for over 12 hours. I didn't expect many to be there. But when I walked in the door, there were over 300 kids running laps. I will never forget that moment. As I walked in, I also saw "Jungle Jack" Hanna signing autographs and OSU basketball star Rick Smith was auctioning off Jim Tressel and Archie Griffin autographed items. It is impossible to describe strength Tyler gained as he reviewed all the pictures of the event.

Two weeks from today, February 6th, we are repeating Laps for Love. We will have the Blue Jacket's Stinger, Brutus Buckeye, and others. We have items form A.J. Hawk, Brady Quinn, Jim Tressel, and more. This year there are three recipients.
Matthew Barr was with us on J-5, and went into remission. While preparing for his Disney World trip with Make-A-Wish Foundation, Matthew relapsed. This time the treatments are not working as hoped, and insurance is exhausted. But the fight continues. I recall something Matthew's dad wrote when Matthew relapsed: "I know that as I go to bed tonight God will be my side, as I know that right now he is with Matthew and all of you. We still believe, and have not given up in this battle. It is far from over."

Matthew's next scans will be the Monday following Laps for Love.

Madilyn Zimmerman is 7 years old, and one of the recipients of of this year's Laps for Love. But Madilyn has also become an aggressive fund raiser. She already has her fund-raising site set up(www.akidagain.org/goto/madilynsteam), and has set a personal goal to raise $5,000!

Ryan Salomons, our wonderful friend. 19 years old Ryan stood tall on the children's cancer floor, as he shouted "I Refuse to Lose!" Ryan's courage became such an inspiration the the Blue Jackets Hockey team signed him on a one day contract. His #3 jersey is on display at the entrance to the Nationwide Arena where the Blue Jackets play, and is still one of the best sellers on their web site.

Ryan passed away this summer, but his unstoppable spirit remains strong. Ryan's dad has been raising funds to purchase new TV's for all the cancer rooms at Children's Hospital. A hospital staff member suggested it would be easier to install the TV's in two years when the construction is completed. Ryan's dad responded, "Ryan lived his last year on this floor. Two years times 36 rooms? That is 72 Ryan's not benefiting from these TV's. I will not wait."
The Ryan Salmons Foundation is about $8,000 short of buying these TV's, and Laps for Love will be covering the difference to have them installed by the winter Olympics.

To donate or support laps for Love, just go to http://www.akidagain.org/goto/Alfriend

All donations are tax deductible.

We would love for you all to be there!

The Ohio State University

2009-12-20T19:49:00.005-05:00

Just over two years ago we heard the words "Your son has cancer". At that moment everything in our world changed.

Tyler began cancer as a 15 year old boy. But he quickly changed into an incredible young man. I watched in awe as he handled each treatment with courage and dignity. I saw his strength as he dealt with the passing of his friends Brett Workman, Rob Kemp, Ryan Salmons, and far too many others. I watched as he return to the cancer floor last Christmas, delivering stuffed animals he has bought with money he had collected. I saw the pain in his eyes as he met the kids still in treatment. He didn't want to be there, but knew it was something he needed to do. He is repeating the tradition this Christmas.

As he returned to school, his greatest desire was to just get back to normal. But he was changed. He had endured a fight that the rest of us could not even imagine.

The doctors said he would not be able to attend school full time. They recommended a scaled back schedule, attending class only once or twice a week. They said it would take a year or two for Tyler to fully recover, both physically and mentally, from the high dose chemotherapy he had received. But Tyler ignored them. He returned to school full time, taking additional work loads to catch up for time lost. And, in this desire for a "normal" life, also joined the basketball and volleyball teams.

On every level Tyler has proven himself. With cancer, treatments, remission, school, and sports, he has succeeded beyond the expectations of all the "experts". And he has done so while refusing to accept any special treatment of any kind.

When Tyler took his ACT's for college, he knew his scores were not high enough. The chemo had given him a hyper awareness of sounds, making it difficult to concentrate. He could have requested a private room (I already had the necessary letter from his oncologist stating the medical cause). But Tyler refused, considering it "special treatment". Instead he just studied harder, even cancelling a trip to Pebble Beach to get in more study time. He re-took the test, and raised his score from 21 to 25.

Tyler has refused to he held back in any way. He continues to fight to win. By taking extra classes and heavier course loads he has now caught up with his class, and will graduate on time this coming May. His last report card has a 3.87 GPA.

As his friends began going on college tours, Tyler refused. He was only interested in one school...The Ohio State University. He refused to look at or apply to any other school. He refused to consider the possibility that he would not get accepted. It was irrelevant to him that OSU has been steadily raising their entrance requirements over the past several years. Kathy suggested an OSU branch campus, offering easier entrance requirements and allowing him to live at home. But he refused. It was OSU main campus or nothing. Cancer could not stop him for achieving his dreams, and nobody in that admissions office was going to stop him either.

On Thursday, as Tyler came home from school, the letter arrived. Tyler has just been accepted onto the main campus of The Ohio State University!

Tyler's success is a testimony of who he is, of the man that he has become. But it is also a testimony of the community that has supported us. The incredible amount of support and prayers we have received has been amazing. Everywhere I go people still ask about Tyler. There is no way I can express the impact this community has had in our lives. We could never have survived this journey without all the support, encouragement, and prayers. And, ultimately, we thank God for it all.

And it is my sincere prayer that Tyler's story changes others the way it has changed us. There are many more kids out there facing this battle. And I assure you that every one of them has the same fight, the same tenacity, the same desire to win. Each one has an incredible story. I don't know why some survive, while others do not. But I believe I've learned part of the "why". I believe this happens for us. I believe it is force us to get over ourselves, to look beyond ourselves. It is so we will reach out to those in need.

I pray that we all continue to fight, to save these kids. Let us never sit back and wait on God...only to find out, at the end of our days, that God has always been there waiting on us. Let us be participants, rather than spectators, in the miracles of God.

G.O.Y.A. - The Cure Childhood Cancer

2009-12-13T11:08:00.012-05:00

Pharmaceutical companies, while funding 50% of all adult cancer research, give almost nothing to childhood cancer. Adult cancer drugs are considered far more profitable. Our federal government (through the Nation Cancer Institute), and the major non-profits (such as American Cancer Society), give less than 3% of their funding to childhood cancer. They prefer to focus on the bigger headlines produced by the more common adults.

Congresswoman Debra Pryce realized the problem when she lost her 9 year old daughter to cancer. She created the Cure Childhood Cancer Act, giving $30 million a year to research. The bill was unanimously approved, but then killed in committee. Congress has now passed the $1.1 TRILLION spending bill... without one dime for childhood cancer.

So now what? Our government, in the mist of the health care debates, has again turned its back on childhood cancer. The American Cancer Society spends more on fund raising events than they give to childhood cancer research. The National Institute of Cancer, after a five year study, concluded that there was no economically viable method of getting private industry to fund the research.

So what is the answer?

I only have one. It is to look in the mirror and say, "If it's going to be, it's up to me."

In my office, we often use the phrase "G.O.Y.A" It's used on people who sit around and wait on things they do not control. If you really want something done, you better do it yourself. Never wait on things you do not control. Take action. Make things happen. G.O.Y.A. = Get Off Your Anatomy (Well, almost. Anatomy is close enough).

In other words, look in the mirror and say, "If it's going to be, it's up to me." G.O.Y.A.

I only care about one thing...results. I no longer care about speeches and promises from politicians and non-profit CEO's. I care about results. I no longer care about their "renewed focus" or "re-doubled efforts". I want results. I no longer ask why they promise to "renew" and "re-double" efforts that have repeatedly failed? I no longer care about politicians who make promises and then shove their heads up their anatomy. Words are words and promises are promises. Only results will save our children.

In this entire mess, there is only one thing I control. If it's going to be, it's up to me. G.O.Y.A.

But is it possible? Can one person do anything? Can one person do what our entire government has failed to do? Well, check it out...

In the year 2000, 4 year old cancer patient Alexandra "Alex" Scott opened a lemonade stand to raise money to end childhood cancer. News spread of Alex's goal. Soon people were holding "Alex's Lemonade" stands around the world, and sending her the money. Alex passed away in 2004, after raising over $1 million for childhood cancer research. Today the Alex's Lemonade Stand Foundation has funded over 50 childhood cancer projects with over $16 million.
On St. Patricks Day in the year 2000, three friends were challenged to shave their heads as a fund-raiser for childhood cancer. They named the event "St. Baldrick's" and hoped to raise $17,000. They actually raised $104,000. Today over 106,000 people have shaved their heads for St. Baldrick's events, raising over $64 million childhood cancer research.
In 1979, 10 year old Laura Graves had Leukemia and needed a bone marrow transplant. There were no family matches, so her parents organized a bone marrow drive in search of an unrelated donor. A match was found and transplant was successful. But Laura's parents did not stop there. They continued their efforts, building a nationwide bone marrow data bank to help others. They continued even after Laura relapsed and passed away two years later. Today the National Bone Marrow Registry has a data base of over 7 million donors, and has given new life to over 33,000 patients.
In 1988, Georgia Cleland was battling leukemia. Her father organized a team to run the NYC marathon to raise money for research. With 38 other runners, he raised $388,000. Today Team in Training has trained over 40,000 people for endurance races, raising over $850 million for leukemia research.
In 2001, 17 year old Alicia Rose DiNatale felt isolated as a teenager fighting cancer. The average age of a child with cancer is 7, and the rooms are full of Sesame Street videos and coloring books. Alicia began putting together gift boxes geared toward teenagers, and sending them to others battling cancer. Today the Alicia Rose Victorious Foundation has delivered over 24,000 gift boxes, and built over 50 teen lounges with plasma TV's, juke boxes, arcade games, and 100's of DVD's.

And there are more. A.J. Piniewski's father created People Against Childhood Cancer, establishing a large data base and petition with over 40,000 names. The Ryan Salmons foundation has teamed up with the Columbus Blue Jackets to help others fighting cancer. Miles Levin inspired millions as he wrote of his battle, stating "dying doesn't scare me, it's dying without an impact. Win or lose, this is my time for impact." And the list goes on and on.

Can one person really change anything? Absolutely. In fact, I suggest that every great change begins with the actions of just one person. Someone refusing to wait on others. Someone refusing to accept the mediocrity of the status quo. Someone willing to get off their anatomy. Someone will to say, "If it's going to be, it's up to me."

A lot of people have ideas, but there are few who decide to do something about them now. Not tomorrow. Not next week. But today. --Nolan Bushnell

How long will you lie there? When will you get up from your sleep? -- Proverbs 6:11

I will lay my head on my pillow at night happily exhausted, knowing that I have done everything within my power to move the mountains in my path. -- Andy Andrews

Even if you are on the right track, you will get run over if you just sit there. --Will Rogers

Every man is guilty of all the good he didn’t do. --Voltaire

It's wonderful what we can do if we are always doing. --George Washington

Words are not deeds. --Shakespeare, Henry VIII

The difference between successful people and others is not a lack of strength, not a lack of knowledge, but rather a lack of determination. --Vince Lombardi

The difference between the impossible and the possible lies in a persons determination. --Tommy Lasorda

There is nothing impossible to him who will try. --Alexander the Great

Only those who attempt the absurd will achieve the impossible. --Escher

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. --Margaret Mead

Don't bunt. Aim out of the ball park. Aim for the company of immortals. --David Ogilvy

What we need is more people who specialize in the impossible. --Teddy Roosevelt

Call To Action

2009-12-03T09:30:00.003-05:00

Below is a post from my friend, Bob Piniewski (A.J.'s dad). The lack of research funding resulted in my son going through incredible pain to beat cancer. The lack of funding resulted in A.J. being stolen from his father by the very same cancer. To the right side of this blog is a list of more "Friends and Fellow Warrior" who have also suffered.

The truth is that there is a cure. We have not found it yet because we have not funded the research. Our congress is guilty of blocking funding to save our children with cancer. If we do nothing about it, then the guilt becomes ours.

Here is Bob's post.

As most of you know, Congress has yet to fund the Carolyn Pryce Walker Conquer Childhood Cancer Act. This is unacceptable. Childhood cancer research needs and deserves the full funding of the bill, $30 million per year for five years. We again, ask, beg, hope, encourage....whatever it takes...please! YOU need to contact your representatives on the House or Senate appropriations committees and tell them why the funding is so desperately needed. The table below shows the names, states and phone numbers for the committee members.
The funding is vital to children right now who are not having successful treatments. The funding is vital to another 46 kids tomorrow. The funding is vital to the most precious, our children....

When you talk with them, doesn't it make sense to say that you will also be calling back after you see how they voted and what was funded? To either thank them or give them 'further thoughts'.

If you would, after you call, tell us what your experience was by replying to this post.

Senate Appropriations - Labor, Health and Human Services, and Education, and Related Agencies

RICHARD C. SHELBY
Alabama
(202) 224-5744

DANIEL K. INOUYE
Hawaii
(202) 224-3934

RICHARD J. DURBIN
Illinois
(202) 224-2152

TOM HARKIN
Iowa
(202) 224-3254

MARY L. LANDRIEU
Louisiana
(202) 224-5824

THAD COCHRAN
Mississippi
(202) 224-5054

JUDD GREGG
New Hampshire
(202) 224-3324

ARLEN SPECTER
Pennsylvania
(202) 224-4254

JACK REED
Rhode Island
(202) 224-4642

KAY BAILEY HUTCHISON
Texas
(202) 224-5922

PATTY MURRAY
Washington
(202) 224-2621

HERB KOHL
Wisconsin
(202) 224-5653

House of Representatives Appropriations - Labor, Health and Human Services, and Education, and Related Agencies

Jo Bonner
Alabama
(202) 225-4931

Lucille Roybal-Allard
California
(202) 225-1766

Jerry Lewis Ex Officio
California
(202) 225-5861

Barbara Lee
California
(202) 225-2661

Michael Honda
California
(202) 225-2631

Rosa L. DeLauro
Connecticut
(202) 225-3661

Jesse L. Jackson, Jr.
Illinois
(202) 225-0773

Todd Tiahrt
Kansas
(202) 225-6216

Rodney Alexander
Louisiana
(202) 225-8490

Betty McCollum
Minnesota
(202) 225-6631

Nita M. Lowey
New York
(202) 225-6506

Tim Ryan
Ohio
(202) 225-5261

Patrick J. Kennedy
Rhode Island
(202) 225-4911

James P. Moran
Virginia
(202) 225-4376

Dave Obey
Wisconsin
(202) 225-3365

Our Fearless Leaders in the U.S. Congress

2009-11-16T10:11:00.009-05:00

There are three realities that dictate most childhood cancer treatments. First is the fact that cancer tends to be much more aggressive in children and teens than in adult. Second, child and teens can withstand much higher doses of chemo than adults. Third, in the past 30 years, there has been only one new drug created for childhood cancer. The result is that most treatments are mega doses of adult chemo, packaged into generic "one-size-fits-all" protocols.

The problem is that chemo does not cure...it kills. Chemotherapy is a group of highly toxic chemical drugs developed to kill fast growing cells. They cannot distinguish between diseased and healthy cells, and therefore kill ALL fast growing cells. Chemo is very tough on adults. But imagine the effects on a growing child or adolescent...where almost every cell in their body is fast growing and under full attack from chemo. This primitive "shot gun" approach to cancer is the reason multiple organ failure is a constant fear for children fighting cancer.

Several recent studies have shown that this system is causing incredible damage to these young developing bodies. A study from the University of Arizona showed that 75% of children receiving chemo have life long side effects, 2/3 of which are debilitating. 30% suffer unrelated secondary cancers before the age of 40.

There is new promising research into targeted cancer therapies, called “molecular-targeted drugs” or "smart bomb drugs". These drugs are designed to search and destroy specific cancer cells without damaging healthy cells.

Through molecular research, scientists have also discovered that cancer is very individualized. Although many cancers appear to be the same type, they are actually quite diverse on a genetic or cellular level. This breakthrough in genetic research has shown the importance of individualized cancer treatment, rather than generic protocols.

The problem is money. Funding for pediatric cancer has gone down every year since 2003. Although there are 12 major groups of childhood cancers, effecting 12,500 children every year, only 3% of the National Cancer Institute funding goes toward these cancers. And while pharmaceutical companies fund over 50 % of adult cancer research, they give virtually nothing for childhood cancer. The adult cancer drug business is simply more profitable and less risky than dealing with children.

For years the childhood cancer community petitioned congress for help, but were simply ignored.

This all changed when U.S. congresswoman Debra Pryce sponsored the Conquer Childhood Cancer Act. She wrote a bill that granted $30 million a year, for 5 years, to childhood cancer research. Like too many in this fight, she discovered the need for funding when her 9 year old daughter lost a year long battle with cancer. The bill was later renamed after her daughter, The Caroline Pryce Walker Conquer Childhood Cancer Act.

For two years the bill was ignored. But this past election year the cancer community was able to raise public awareness of the bill. Once that happened, the bill was unanimously approved by both the houses and signed by the president. In fact, virtually every senator and congressman praised themselves for "championing the cause of our children". They posted banners on their congressional websites, and bragged of creating a "new and robust funding partnership between government and the medical and research communities".

So what is the status of the bill now? Well, in the weird and strange world of government, "approved" and "funded" are two very different things. Here is the status:

Caroline Pryce Walker Conquer Childhood Cancer Act, House Bill H.R. 4927. Introduced by Representative Pryce March 9, 2006. Unanimously approved June 12, 2008. Referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.

Caroline Pryce Walker Conquer Childhood Cancer Act, Senate Bill S. 2375. Introduced by Senator Coleman March 7, 2006. Unanimously approved June 12, 2008. Referred to the Senate Committee on Health, Education, Labor and Pensions. No further action has occurred on this legislation.

That's correct. Our same "public servants" who unanimously approved the bill during the election year, have now quietly removed it from the budget.

In a desperate attempt to get something rather than nothing, the few real supporters of the bill offered a compromise of $10 million. But the request is being blocked by the Labor, Health, and Human Services committee. By blocking it in committee, our elected officials can brag that they supported the cause while actually doing nothing.

Apparently the committee sees no obligation to follow through on even 1/3 of their promise. They make speeches and toot their horns. But when everything is said and done, we find everything gets said and nothing gets done. They just sit around with their thumbs up their orifice of choice.

But remember...at the end of the day, every elected official is working toward one goal: To be re-elected. This is still a democracy. They work for us, and we pay them. And we can fire them. If you have a problem with their conduct, don't complain...do something.

You can reach your congressman by going here. If you do not, you have no right to complain. These are elected officials, and will do whatever it takes to stay that way. Tell them how to keep their jobs. Tell them to fund the Conquer Childhood Cancer Act that they so enthusiastically approved last year. Tell them please, just this once...just as a concept...do your damn job and keep a promise.

Michelle Obama and Joe Sastak

2009-11-15T15:56:00.006-05:00

When Tyler was diagnosed with cancer, I responded the way I respond to every thing. I guaranteed Tyler that we would win this war, and I sat down to create a road map to accomplish that promise. It's very simple really. Find the plan that works, commit to sticking to the plan, get the best doctors and hospitals, and follow through to success.

However I quickly learned the extent of my ignorance. I learned a very ugly reality. There is no plan. We operate in the dark. It is true that there are general plans, generic protocols, that work on some kids. But no one knows why they work on some and not others. No one knows why some relapse and others do not. How do you make decisions without this information?

Even the statistics from doctors provide little information. If they say your child has a 50% chance, they are not even talking about your child. They only mean that, on average, 50% of kids on that treatment are alive in 5 years. That statistic is based on all kids in the treatment, averaging various stages of cancers and varying health issues. They cannot tell you if your child is more similar to the half that lived or the half that died. In most cases that data is not even available. But we are forced to choose between different treatments using this incomplete. Some will die. Some will relapse. Others will have life long complications. And we will never know why, and never know if a different decision would have altered the outcome. We operate in the dark.

At the time of Tyler's diagnosis, I was completely ignorant of the lack of progress in childhood cancer. I did not know how blind we were in fight cancer. Less than 3% of cancer research money goes to childhood cancer. In the past 30 years there has been only one new pediatric cancer drug introduced to the market. The result is that cancer is the leading cause of disease death in children. One in 300 children will be diagnosed, and every day 7 will die.

So what do we do? We need more funding, which begins with awareness. My first step in awareness came the day my son was diagnosed with advanced stage IV Burkitt's lymphoma and leukemia. It is my hope that others will discover the truth through far less dramatic circumstances. I hope and pray they learn through us spreading awareness.

Candlelighter's Childhood Cancer Foundation will be holding the Annual Tree Lighting in DC on December 12, 2009. They have invited both Ms. Obama and Rep. Sestak, who chairs the newly founded Pediatric Cancer Caucus. Having both attend would be fantastic for the news coverage and awareness it would generate.

We'd like your help encouraging them to attend. A demonstration of the size, strength and passion of the childhood cancer community. Besides PAC2; Alex's Lemonade, Rally, St. Baldricks, CureSearch, Rock Against Cancer, kidSTRONG, Team Unite, Frankie's Fight, Max's Ring of Fire, Aimee's Army and other CC orgs have committed to publicize and or/participate.

WHAT TO DO

■Fax invitations to Ms. Obama's scheduling team at 202-456-2326 and/or email at firstladyscheduling@who.eop.gov
■Fax invitations to Rep. Sestak's office and include his wife and daughter (Susan and Alexandra) at 202-226-0280 and/or email here
■If anyone wants to fax or email your local reps, this link will help you find the information you need
■you can send free faxes here
■the number of faxes is about 1% of the number of emails these officials receives on a daily basis, so a large number of faxes will stand out

WHAT TO FAX and/or EMAIL

Obviously that is up to you, but to maintain a common theme please include language along these lines:

TO: First Lady Michelle Obama Or Representative Joe Sestak
RE: Childhood Cancer Awareness Tree Lighting 2009
Dear _______________,

I am writing to encourage your attendance at the Candlelighter’s Childhood Cancer Awareness Tree Lighting Ceremony on Saturday, December 12, 2009, at 6:30pm EST, in the Old Post Office Pavilion. The Ceremony is held in honor all of the children who are fighting, or who have fought, Childhood Cancer. There will be hundreds of children and families in attendance who fight or have fought this vicious disease, the leading cause of death by disease for children through age 20.

This link will provide you more information on the event: http://www.candlelighters.org/Awareness/AnnualTreeLightingEvent/tabid/405/Default.aspx

My son/daughter/neighbor/sister/brother _______(insert personal story as desired)

Each year in the U.S. there are approximately 12,500 children between the ages of birth and 19 years of age who are diagnosed with cancer; two school classrooms every day. About one in 300 boys and one in 333 girls will develop cancer before age 20. Last year, about 3,000 died of cancer, thus making cancer the most common cause of death by disease for children and adolescents in America.

Childhood Cancer will spare no socio-economic boundaries and does not discriminate among gender, race, religion, age, or ethnicity. Childhood Cancer is a debilitating, life threatening illness that carries a substantial physical, emotional, and economic burden for the entire family.

We would be honored, _________, if you could attend the Childhood Cancer Tree Lighting Ceremony. The awareness you would bring by attending would benefit children across the country. Please come and honor these special children. We deeply appreciate your time and consideration.

Christmas and Noah Biorkman

2009-11-06T13:06:00.004-05:00

During Tyler's battle with cancer, we received incredible support from many people. We are still in awe of the outpouring of our neighbors, as well as those around the county and the world. I could speak for days about the things that people did for us.

One of the many events that stands out was our Christmas of 2007. Tyler was home for the first time since his diagnosis. We knew Tyler only had two or three days before the chemo effects would send us running back to Children's. We could not really make any plans. We also had not bought many gifts..we were always in the hospital, and no one was really in the shopping spirit. But the six of us were all together, and we had a wonderful time. Then, in the middle of the night, gifts for all the boys were dropped off at our door step. It was a wonderful Christmas surprise. You can read the story here.

Noah Biorkman is 5 years old. Like all 5 year olds, he loves Christmas. One of Noah's favorite parts of Christmas is getting Christmas cards addressed in his name. Unfortunately, Noah appears to be approaching the end of a 2 1/2 year battle with cancer. Doctors are doubtful that Noah will make it to Christmas. In response, his family is celebrating Christmas this week-end. If you want to add to Noah's Christmas, all he is asking for is Christmas cards. He would love to receive one from you.

Noah Biorkman
1141 Fountian View Circle
South Lyon, MI 48178

Please only send cards. Even if you live in the area, please do not go to their home. This is a private time for the family.

Prayer

2009-10-27T12:54:00.024-04:00

Talk of prayer comes up a lot in the childhood cancer community. I say it a lot as well. To be honest, I never used to pray much. Partly because I didn't really see it as a big deal, but mostly because I would just get bored. I'm far better at the "doing" than the "praying". Kathy says it's only because I have A.D.D., and am incapable of ever sitting still. Well, that's probably true. But I tell Kathy that having A.D.D. is perfectly normal, and the real problem is all those people with A.S.D. -- Attention Surplus Disorder. She then tells me I'm an idiot, and walks away.

A few years back, the boys and I went to Belize. It was a church building project in a village up in the rain forest. The missionary there asked everyone to take shifts praying, but I had no interest in that. I was there to "do", not "pray". Just get the job done.

I took the assignment of building tables and benches. It was not a fun job. The only tools were some old drills and rusted wrenches. My hands were sore and bleeding as I struggled to tighten the nuts and bolts to keep the legs on the tables from wobbling. I had a few choice words for that praying missionary as I drilled a screw through my thumb. Initially I was worried about cussing in a church. But then I remembered Jesus was a carpenter, so I was pretty sure He could appreciate the circumstances.

About that time the missionary walked in and asked if I had any prayer requests. I suggested he pray for my nuts. He said, "Excuse me?" I repeated that my nuts were very loose, and said they were in need of prayer. He just looked at me with an odd expression. So I stood up and said, "I'm serious, Reverend. My nuts are so loose, my legs are wobbling". I then shook the table to show him what I meant. He looked at the table, looked at me, dropped down on one of the benches and started laughing. We became friends after that.

He came by a few more times that week, always asking me to pray with him. I passed, saying I was better at the "doing", and that he appeared suited for the "praying". Finally, on the last day, I was so hot and tired that I agreed to go into the church and pray with him. He knelt at the pew and went through his long list of prayer requests. Well, I assume he did. I actually fell asleep as soon as I sat down.

It was a couple of years later that Tyler was diagnosed. Facing the greatest challenge of our lives, I was very comforted by all those praying for Tyler. Still, I placed more emphasis on the doing than the praying. I was the "doer", and praying was a domain that belonged to others.

Then, late one evening in the hospital, I was sitting in the parents lounge with another dad. He said he did not believe that prayers change things. Rather prayers change people, and people change things. That was 18 months ago, and I have thought a lot about the conversation.

I don't know if that statement fits with church theology (and don't really care). What I do know it that the statement made it easier for me to pray. The more I think about it, the more I believe praying is doing. When I asked you to pray for specific kids, I'm asking for more than lip service. I'm asking that you keep these kids on the forefront of your thoughts. I'm asking that you seek direction from God on what to do about their situation. Asking that you search for answers, actively participating in the fight. I no longer believe that it is a choice between doing and praying. I believe they are one in the same. I believe our prayers develop our priorities, focus our energies, and direct our actions. If they do not, they are nothing more than words.

I believe God has created each of us for a great purpose. But I also believe it is our choice to follow that purpose. Prayer throws us and our decisions into the presence of God and eternity. It is our first step in living out that purpose. If we take that step, and follow through with our actions, miracles occur and all of heaven rejoices. When we do not, children die and all of heaven weeps.

Forgive me if it sounds like I'm trying to hold a church service here. I'm really just trying to explain my words. When I ask for prayers, I'm asking for action. Remember these kids. Do not forget them. Think of them as you walk through your day. Tell others about them. Search for ways to cure or comfort. And most important, remember this: There is a cure. It is out there, and can be found. The easy cures have all been found, and God has saved the hard ones for us. It appears God considers us capable. Please don't try to prove Him wrong. Please remember our children. Please pray for them. Pray in every way, with every word and every action.

Matthew Barr is four years old. He had a brain tumor, and he beat it. As he was leaving for his Make-A-Wish trip to Disney, the tumor returned. The second time has been more of a battle, but Matthew continues to beat back the cancer and stand tall. Last week the cancer moved into his liver. Another reminder that cancer never plays fair. It lies and cheats and steals on every level. Please pray for Matthew. Please pray in every sense of the word.

Tyler Genneken was told in August that his cancer was unstoppable, and he had weeks to live. Tyler made two wishes. First, he wanted to have a bone marrow drive. He knew his own time was running out, but he still pushed for the drive. It was his prayer (with action) that his own battle result in saving the lives of others. His second wish was to see his older brother get married. Doctors said the wishes would not come true, that he did not have that much time. But they were wrong. Earlier this month, Tyler watched as his bone marrow drive registered an all time record number of new donors. The following day he remained strong enough to stand in front of the church, as the best man in his brothers wedding. Tyler continues to fight. His family continues to comfort him. Please continue to pray for Tyler.

Joe Friend beat cancer, and was "set free" from the J-5 cancer floor just before we arrived there. We did not meet him at the time, but heard of his always positive attitude. He constantly encouragement of the other kids, playing the roll of big brother. This past January, just weeks before his wedding, Joe relapsed. Soon he was back at Children's Hospital. As I walked into his room on J-5, I saw the smile that is always on his face. To his right were the hanging bags of chemo, to his left was his wonderful new bride asleep on the couch. Please keep Joe in your prayers. Last month Joe was baptised, and he and Holly moved into their own apartment.

Christina O'Brian is nearing the end of her chemo treatments. They need to stop short of the full regiment, but are hopeful they have beaten the cancer. Christina is a beautiful and confident young woman. And she has faced her battles with incredible courage. Every age group has a unique set of issues to deal with when fighting cancer. I think what the teens and young adults go through is especially difficult. Cancer attacks just as they are developing their own identity and self-esteem. And although I have only sons, it seems to me that the hair loss and physical issues are especially difficult on the girls. And that is just one more thing to add to all the life and death issues these young people face. Please continue to keep Christina in your prayers.

And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. -- Luke 11:9

You plus God equals everything. -- Zig Ziglar

The bitterest tears shed over a grave are for those words left unsaid and deeds left undone. --Harriet Beecher Stowe

I have come to believe that God put me on earth to get Stage IV alveolar rhabdomyosarcoma. Why? So that I could show the world how to have Stage IV alveolar rhabdomyosarcoma—or rather how to handle what is close to the worst thing that could possibly happen to me with as much strength and grace as I could manage. I promise to continue to be the best model I can. --Miles Levin

Commit your actions to the Lord, and your plans will succeed. -- Proverbs 16:3

God is not found in the disease, but rather in the response of people, friends, doctors, family to the challenges we face. -- Rabbi Dan Cohen

Words are not deeds. -- Shakespeare, Henry VIII

People say nothing is impossible, but I do nothing every day. -- Winnie the Pooh

Sam Owen & Mason McLeod

2009-10-24T09:57:00.013-04:00

While in the hospital with Tyler, I had a recurring dream. I was alone in the empty hospital, running frantically from room to room. I was in a desperate search for some secret, but did not know what it was or how to find it. The hallways and corridors seemed to go for miles. Often they were submerged underwater, and I would swim through searching from air pocket to air pocket. Eventually I would enter a room that I was convinced held "the secret". But soon I would feel the approaching presence of some great doom. Sometime I would run, other times I would stand to fight. But the doom never showed its face, and the secrete was never found. Every night it was the same dream, continuing through all of Tyler's treatments.

Very weird. Some probably think I was just losing it (Kathy would strongly agree, and she didn't know about the dreams). Just a bunch of dreams.

But cancer is not a dream. It is very real, in a world where we search for answers that are not there. Doctors can find and kill the tumors, but the real cancer is hidden. It is sub-detectable, buried deep in the bone marrow and central nervous system of our children. The "cure" is to blast our children with indescribable volumes of poisonous chemo, and then sit back and wait to see what happens. Blasting our kids too hard results in organ failure, too little results in relapse with a vengeance. So what do you do? No one knows. We search for answers without any direction. And we walk that fine line, as we wage war in bodies of our children.

Over the past few days I have thought about the dream. What was the "secret", and will I ever find it? Was it the cure? Tyler now is cancer free and doing great. It is true that I badgered doctors, hospitals, drug companies, and research facilities around the world. But we still don't know what worked, or why some survive and others do not. The answers still aren't there.

But there is one secret that I have learned. I have learned from these children the real purpose of life. With very little time, these kids have achieved greatness. They have inspired others to love deeper, strive higher, and live richer. They have taught us the true meaning and value of life.

Our children are being ignored, lacking the research and funding to effectively fight this war. And in spite of all they go through, they continue to touched and inspired more people than I have in all of my years. As I watching their love for life, I have no choice but believe anything is possible. They have taught me to look in the mirror everyday, look at all the opportunities in life, and say, "If it's going to be, it's up to me."

As I watch Tyler, I see his as a reminder of the value of life. These battles can be won. Tyler, Jana, Jake, Sinjin, Tristan, and so many others are here to remind us that it is worth the fight, the battle can be won. But there are also so many others that tell us that we have not done enough, that the fight is not over. We must keep searching for the cure. We must win this war.

Sam Owen and Mason McLeod are both heroes. Like the kids mentioned above, they bravely fought an ugly cancer called Burkitt's. They gave everything they had to give. Their families surrounded them in love and prayers. But that is not enough. Their cancer was more powerful than the existing medical knowledge. We must change that. If we do not, no one else will. We must attack this war with all of our passion, with all of our resources. We must look in the mirror and say, "If it's going to be, it's up to me.

Mason McLeod passed away on Tuesday. Our friend (and Burkitt's survivor) Sinjin put together this video.

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Photo and video editing at www.OneTrueMedia.com

Sam Owen passed on Wednesday, just a couple days after his 13th birthday and Bar Mitzvah.

Mason McLeod

2009-10-21T20:59:00.020-04:00

I first learned of Mason McLeod more than a year ago, just as Tyler was getting on the winning side of cancer. I believe I somehow crossed paths with his grandmother on a cancer website.

Mason approached his fight with a spirit that refused to lose. Mason's little brother donated bone marrow. His mother, grandmother, and the entire family joined in the fight. His father searched out treatments around the world. With that determination, I knew deep in my heart that Mason would survive.

Fighting Burkitt's is hard. The lack of funding prohibits any form of individualized focus or research. And the HIPAA privacy laws create barriers from parents getting the information. When given Tyler's prognosis, I asked doctors the difference between those that lived and those that did not. But no one knew. What were the characteristics of those that survived, how did they respond differently? There had to be something to guide our decisions. But there was not. Bottom line: 20% of those on this treatment will be alive 5 years from today. Period. How lucky do you feel?

There is no database of shared information. No place for parents to go to compare their children to profiles of other children. No information beyond the raw statistics. A 20% survival rate mean nothing until you know if you child is more similar to the 20% or the 80%. But that information is almost impossible to discover.

As cancer hit, Mason hit back harder. After every setback, Mason responded with a vengeance. For 16 months the cancer has resurfaced. Mason has never flinched, always returning to the fight with courage. As Mason fought, his father searched the world, contacting Burkitt's survivors, posting on discussion boards, looking everywhere for answers. How can you possibly lose, when you give absolutely every single thing you have to give?

But this is not a Hallmark movie. This is the real world of cancer. There are no truths, no absolutes, no answers. It is a world where giving everything you have is sometime just not enough.

Yesterday, after 16 months of courage and strength that defies description, 10 year old Mason Campell McLeod passed away.

He walked away from his pain, and into the arms of God. And in the end, cancer still did not win. The only thing it ever claims is a tired, worn body. And even that is a hollow victory, for it can never claim our soul.

Solving the Math Problem

2009-10-15T10:39:00.009-04:00

October is Breast Cancer Awareness Month. Many in the pediatric cancer community question why our children get so much less attention. Well, part of the reason is that the Koman Foundation has done an incredible job building awareness, and must be commended for these efforts. Every organization, including those in pediatric cancer, can learn from the model they have created.

But there is an additional obstacle to curing childhood cancer, one that breast cancer does not face. The obstacle is a math problem, created by the business and politics of cancer.

First we must appreciate the incredible amount of money needed to research for the cure. The National Cancer Institute estimates that the development of a new cancer drug requires an average investment of 15 years of research and $1.3 billion in funding. And in the end, less than 8% of these drugs ever receive final FDA approval (compared to 20% of non-cancer drugs).

So who is going to pay for all this? That is where we slam head-on into the ugly reality behind the business and politics of cancer.

THE BUSINESS OF CANCER

I apologize if this comes across very callous, but this is how it all works. A pharmaceutical company will always look at their potential return on investment. They must recoup their investment, plus their projected profit margin, from the potential "customer base" of cancer patients. When they look at breast cancer, as an example, they see 200,000 people diagnosed each. Treatments and relapses can continue for several years, providing over a million "customers" at any given time.

But these companies see a different picture as they look at childhood cancers. First, it is not one cancer. There are actually 12 major categories of childhood cancers, encompassing over 100 different cancers that are unique to children. Cumulatively, there are 12,500 new cases per year. But with all the variations, any specific drug would have a "customer base" of only a few hundred. The very ugly truth is that there is no financial return on the investment.

Here's a 2x4 right between the eyes...according to a National Academy of Science report, “The pediatric cancer drug market is often well below the radar screen, and typically it has not made business sense to invest in research and development for these cancers. The biological and clinical characteristics of nearly all childhood cancers differ substantially from adult cancers. Market forces are not sufficient to drive the process and bring to the bedside new drugs for children with cancer.”

That is the business of cancer. Saving our children "has not made business sense". Is there any wonder that the industry considers Viagra to be the greatest pharmaceutical accomplishment of this century?

THE RESULT: There has not been a single pediatric cancer drug developed in the past 25 years. Instead, the pharmaceutical companies have used kids to recycle outdated chemo drugs. Since it is known that children can survive higher doses of chemo than adults, the primary treatment has been to give the kids mega-doses of outdated "hand-me-down" adult chemotherapy's. This has been a goldmine for the pharmaceutical companies, expanding their customer base without the cost of research and development of new products.

But what about the children? Recently the first major study was published, showing the long term effects of this strategy on our children. It stated that 2/3's of these kids are suffering life long side-effects. But report changed nothing. There are simply no other options available.

In the case of my son's cancer (Burkitt's), Rituxin is the only significant drug improvement in many years. Rituxin is actually an old arthritis drug that, by accident, was found to increase the effectiveness of chemo on many blood cancers. The lack of funding has forced childhood cancers to "cut and paste" from out-dated adult treatments, rather than discovering new treatments customized for the kids.

THE POLITICS:

While to ultimate goal of business is profits, the ultimate goal of politicians is votes. Again, I apologize if this sounds callous. But it is the truth. From the moment of election, every president, senator, and congressman has one primary goal...re-election.

Look again at breast cancers. There are currently 2.5 million currently either in treatment or remission. That is a pretty good size voting block. Adding in their spouses and immediate family takes the number to over 10 million. Throw in close friends and extended family, and you are over 50 million potential voters. Lung, prostate, and colon cancers each have similar numbers.

So how do our elected officials respond to this information? They love to "talk" about childhood cancer. They unanimously approved the Cure Childhood Cancer Act during the election year. But as the election passed, they refused to fund any of the money they approved. They give only lip service to the 12,500 children (non-voters) diagnosed each year, and their 25,000 parents.

Even if you include everyone...cured, in remission, or in treatment...of every type of childhood cancer...you have 270,000 people. That is still 1/10 of breast cancer alone. Our politicians know these numbers, and act accordingly

Understanding this, it is easy to see why the stimulus package eliminating the approved $30 million for childhood cancer research, while adding $120 million to distribute free condoms in Africa (for AIDS prevention-a powerful voting/lobbying block). Whether discussing money or votes, the answer can always be found in the numbers.

The non-profit foundations review the same numbers. Like the politicians, they love to talk about the kids. Their brochures are full of pictures of smiling children with bald heads. But they also know the numbers. They know how to maintain the flow of donations. They promote and display the kids, while allocating an average of 3% of their funding childhood cancer research.

THE RESULT: Research facilities, universities, and hospitals are forced to alter the direction of their efforts, in an ongoing attempt to chase the funding. They must do so, or close their doors. My son's cancer (Burkitt's) is a classic example. The cancer found in kids is called "Sporadic Burkitt's". But as I chased down promising new research, I found most been redirected to an extremely rare form called "Immunodeficient Burkitt's". I was very confused as to why 85%-90% of the Burkitt's research switched to the very rare type. The answer is always in the money. The Immunodeficient type shows up in AIDS patients, and AIDS research receives $21 billion in Federal funding. Unfortunately the research benefits no one else, since the primary focus is on how treatments interact with other HIV drugs. Our children, again, are pushed aside.

SO WHAT DO WE DO NOW?

Last year Bob Piniewski created a Cure Childhood Cancer Petition, with a goal of one million signatures. Why would he pick a number like one million? It's impossible. That number is 20 times higher than the total number of children fighting cancer in the United States today. So why did my friend choose such a high number?

Bob set the goal for one reason. We need it. The math is not on our side. He knows we have 1/10th of the resources, and need 10 times the funding. He knows we will fail if we limit ourselves to own community. We need to pull everyone into this fight.

Every person must know the truth of this battle. We must become evangelical, bringing awareness on all levels. This doesn't mean becoming obnoxious. We are not "selling" anything. But it does mean finding every opportunity to say "Did you know..." It means sharing the stories of these kids. It means pulling more and more people into the fight.

You see, childhood cancer is different than other cancers. It's about more than the loss of life. It's about the loss of potential, the loss of the future. It is about children losing 50, 60, or 70 years of life. It affects us all.

I don't mean to belittle others fighting cancer. My grandfather lost his life to cancer in his 80's. My mother-in-law is currently fighting cancer in her 70's. But they would both agree that it is different than my 15 year old son having cancer.

There are currently 40,000-50,000 children fighting cancer. The pharmaceutical companies and politicians see that number as insignificant. We need them, so we must swell the numbers. We must spread the message. We must tell the world.

Adding one million people to this fight is a big challenge. Proceeding to ten million will be a bit harder. But as Lance Armstrong says, there are only two options when facing a challenge: Lay down and die, or Fight Like Hell!

As for me...I choose to fight.

So how do we do this?

Send out Bob's petition. Set it out at work, take it to the grocery story.
Spread awareness. Everybody needs to spread the word about what is going on. Talk at work, at school, at church. Repeat the stories of these kids. Create a blog. Send letters to the papers. Let people get to know these kids that are fighting for their lives. Every week I send out an email to my database about the status of kids I am following. Do everything you can think of doing.
Call, email, write your elected officials. Get everyone you know to do the same. Remember: They do respond to numbers.
When supporting causes, make sure you know where the money is going. If the foundation is proud of their spending, they will gladly supply the information. If not, you should reconsider your giving. CureSearch, Candlelighters, Alex's Lemonade, St. Baldrick are just a few of the great ones.
We need public/private partnerships to be developed, involving govt, industry, academic research institutions, advocacy groups, and philanthropies to lead pediatric cancer drug discovery and development. This will only happen when businesses and government see a specific value in doing so. That will only happen through large community awareness, and openly and actively supporting companies that support childhood cancer research.
The National Cancer Institute must assume responsibility to complete development of treatments that show promise, but are dropped by private groups due to lack of funding. This requires that we stay educated on new research, and then write, email, vote, scream, yell, and demand our elected officials to act.
The pharmaceutical industry, NCI, and FDA need to reduce the delay in starting pediatric clinical studies of agents in development for adult cancers. And then they need to start funding them. This will only happen when we stay educated, informing others, and demanding that our government act with accountability.

How hard is this? Very. But I have seen young men and women stare into a disease that comes straight from the pit of Hell. And I have watched them do so, while maintaining amazing love, compassion, courage. After being a witness to their strength, I believe everything is possible. There is only one question. How hard are we willing to fight?

Every man is guilty of all the good he didn’t do. -- Voltaire

Do you know that in a race the runners all compete, but only one receives the prize? Run in such a way that you may win it. --Corinthians 9:24

For the purpose of action, nothing is more useful than narrowness of thought combined with energy of will. --Henri Fredrick Amiel

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.--Margaret Mead

The best way to predict the future is to create it. --Peter Drucker

First they ignore you, then they laugh at you, then they fight you, then you win.--Mohandas Gandhi

The only way of finding the limits of the possible is by going beyond them into the impossible --Arthur C. Clarke

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all--Dale Carnegie

Vision is a self fulfilling prophet. Don't predict the future. Create it.--Leland Kaiser

The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough.--Randy Pausch

It is a hard rule of life, and I believe a healthy one, that no great plan is ever carried out without meeting and overcoming endless obstacles that come up to try the skill of man’s hand, the quality of his courage, and the endurance of his faith--Donald Douglas

Healthcare Reform

2009-10-13T10:49:00.003-04:00

Hey, there's an easy topic to breeze through. I was going to post something about the meaning of life or the existence of God, but I thought those topics would be too simple.

Actually I don't wish to get into a political debate on health care reform. This blog has one purpose: supporting a cure for childhood cancers. And on that topic, I am concerned that both sides in the political debate are ignoring the real issues.

Before you can reform anything, it probably helps to understand the problems you are attempting to fix. From our personal experience, here are the problems we found:

PROTOCOLS: Individualized treatment is extremely rare in pediatric cancer. Most hospitals follow a strict adherence to protocols, created as a result of cumulative data from clinical trials. The system works with common cancers (such as breast cancer, with 200,000 new patients each year). But there is a math problem with childhood cancers. Protocols require clinical trial data of 350-500 patients. Although there are 12,500 annual childhood cancer cases, they are divided into a lot of different cancers. Most childhood cancers have about 200 new cases per year. And only 10% of children are enrolled into the trials. With only a few dozen cases to work with, it is impossible to create a specialized protocol.

The solution has been to "bundle" similar types of cancer, creating several "one-size-fits-all" protocols. To fully appreciate the problem, understand the purpose of protocols: Cost-cutting. It is to allow the senior oncologists to take on more patients. This is done by reducing individualized decision making, and delegating more work to the 1st year residents and nurse practitioners. Individualized attention is greatly reduced, and often non-existent.

In his book "How Doctors Think", Dr. Groopman of Harvard Medical describes the intense pressure on doctors to follow protocols. He writes that doctors often ignore symptoms that do not fit neatly into the “assembly line systems”. He states that doctors who deviate from protocol are "ridiculed by their peers for being obsessed with the esoteric while ignoring the mainstream. They are said to be showoffs."

My son was put on the “Burkitt’s protocol”, but I soon learned there is no such thing. Burkitt’s is too rare to have a protocol, so he was placed on a generic protocol for all large B-cell lymphomas. I then profiled the most relevant factors effecting my son’s prognosis (advanced stage IV, grade C, leukemia and extensive bone marrow/cns involvement, 15-19 age bracket), and asked for specific data about kids matching that profile. No one knew.

My search lead me to Stanford University Hospital that got the protocol approved through the FDA, then to the Institut Gustave Roussy in France that developed the protocol, and finally the research statistician currently living in Germany. He did not know. The numbers were too small to have any statistical relevancy. Still, treatment decisions are made, and parents are being informed, as though all these generic treatments are custom tailored to their child.

SUTTONS LAW: This is the medical principle of quickly diagnosing the most likely disease, and immediately proceeding with treatment. The law is named for the bank robber Willy Sutton, who was asked why he robbed banks and replied "because that is where the money is".

The truth is that there is very little money in diagnosing cancer. The big money is in the treatments. The emphasis therefore is to immediately diagnose the most probable problem, assign a standardized protocol, and quickly move to the next patient. Dr Groopman states in his book that “once begun, a diagnostic momentum is created that is rarely questioned.”

Taylor Schrauger lost his let to cancer at 14. His father recounts their experience in his book “Walking Taylor Home”. Taylor finally went into remission. The most probable location for a relapse was Taylor's lungs so, following Sutton's Law, doctors scheduled regular lung scans. But Taylor’s dad found that, although very rare, a relapse in the other leg would be fatal if not caught immediately. He insisted on scans of the leg. But following Sutton's Law, the doctors refused. Finally, after reoccurring leg pain, the doctors reversed their decision. Unfortunately the results were devastating. The cancer had already relapsed in the leg, and spread aggressively. Sutton’s Law focuses on highest probability to achieve a speedy diagnosis. It ignores risk.

This is not an issue of bad doctors; rather it is a reality of good doctors being forced to handle more and more patients. This focus on cost control has created enormous pressure in all levels of the medical staff to "stick to the plan". Pressure comes from hospital administration, legal departments, and insurance companies to avoid any type of individualized treatment.

Dr. Croskerry of Dalhousie University in Nova Scotia, states that "Doctors are shying away from a rare diagnosis. Powerful forces in medicine discourage hunting for them. In an era of cost containment, when insurers and managed care plans scrutinize how much time physicians spend on any one patient, doctors have a strong disincentive to pursue the ideas that are out there".

CLINICAL TRIALS: Survival rates are much higher for children enrolled in clinical trials. However fewer than 10% of childhood cancer patients enroll in trials. Why is this? Another curious fact...many clinical trials are shut down because of lack of enrollment. These trials can save lives, but few will enroll. Why? The University of Arizona conducted a study earlier this year to find the answer. The number one reason: Doctors never informed the family of the existence of the trial. Why is this? With our son, we asked specifically about trials, and were given a lot of mis-information. Why? I have never received a straight answer, but did find a couple of possibilities.

1. Money: Clinical trials have a long list of very specific guidelines on the patient and their disease progression. This is to keep a "pure" data pool, avoiding the possibility of unrelated issues affecting the results. This is understandable. But this only applies to the data being added to the research data pool. Why can't a patient follow the treatments in the trial, without their data being added to the research pool? The reason is money. Research facilities will not pay the cost of the trial if they can not use the data. And few insurance companies will pay for trials, because they are outside of protocol. The burden then falls on the hospital. The response from the hospital, all too often, is to simply never mention the option.

2. Money: For those kids that do fall within the guidelines of the trial, there is another obstacle. On average, 75% of a pediatric cancer hospital profits are from markup and rebates on chemotherapy drugs. But in a clinical trial, the research facility funding the trial typically supplies the drugs, cutting the hospital out of their primary source of profit. The hospital is still paid for services rendered. But with all the cost controls, the elimination of the chemo profit center often results in a net loss to the hospital.

FUNDING: To understand the funding problem, it is important to understand the numbers. To bring a cancer drug from concept to market takes an average of 15 years, at an average cost of $750 million. Factoring the litigation cost of potential problems, many groups estimate the total cost to be $1.2 billion. That is for a single drug. Add to this the fact that less than 8% of cancer drugs researched ever receive FDA approval (15%-20% is the average for non-cancer drugs). Look at these numbers, and it is easy to understand why there has not been a single pediatric cancer drug brought to market in over 25 years. A study last year by the National Institute of Health concluded that there was simply no profitability in researching new pediatric cancer drugs. Bluntly stated, the market is too small to justify the cost if investment.

Many assume the government would step in to fund the research. But this also failed. Congresswoman Carolyn Price worked aggressively for funding after losing her daughter to leukemia. This past election year, after years of effort, both houses of congress unanimously approved her $30 million Cure Childhood Cancer Act. $30 million is low considering the numbers above, but something is better than nothing. Unfortunately, the same politician who approved the bill during the election, have now refused to approve the spending. In a compromise, supporters tried to get $10 million included in one of the spending bills (something is better than nothing). But this also failed to get the needed votes.

CONCLUSION:
The current system is placing increasing pressure to streamline the diagnosis and treatment of pediatric cancer. Decisions are increasingly made by business managers working to increase profits. There is absolutely a need for reform. But the reform discussions never address these issues.

The reform discussions are all about lowering costs to get more people in the system. I appreciate the merits of the goal, but it does nothing for pediatric cancer. In fact, the emphasis on cost containment could create even more assembly line "on-size-fits-all" systems.

As stated above, this blog is not "pro" or "con" on any political views. This is just information. If you are opposed to the government’s health care reform, please understand the problems and help us improve the current system. If you are in favor of the health care reform, please understand the problems, and work to include viable solutions into the reform.

The simple truth is this: We desperately need more money. A lot of money. We need more money in research, and we need more individualized treatments (which cost more money).

I understand those who claim the problem are caused by a system run by business managers seeking higher corporate profits. There is truth in that statement. But please understand this as well: The problems will not automatically disappear when run by political appointees attempting to juggle mounting federal deficits.

Pink verses Gold

2009-10-09T11:11:00.000-04:00

October is Breast Cancer Awareness Month. This campaign has been very successful. The increased awareness of breast cancer has resulted in large increases in funding, resulting in greatly improved survival rates.

September was Childhood Cancer Awareness Month.

Did you know that childhood cancer is the leading cause of disease deaths in our children?
Did you know that 1 in 300 children will develop cancer before the age of 19?
Did you know that the causes of many of the 120 types of childhood cancer are unknown and for the most part untreatable?
Did you know that breast and prostate cancers receive 20 percent of the National Cancer Institutes budget of $4.6 billion?
Did you know that all 120 childhood cancers combined receive less than 3 percent?

How many children are in your school district? Divide that number by 300, and you will know how many will get cancer before the age of 19. Then divide that number by 5, and that is how many will die of that cancer. And then remember this...It is totally random. Childhood cancer is not connected to heredity or lifestyle. There is no way to predict who will get it, and therefore no way to protect your child. In other words, that child could be yours.

So what do we do?

Some are very jealous the attention breast cancer receives, angry that our children continue to be ignored. My friend Bob Piniewski has some thoughts on that topic. Our teenage sons battled the same cancer. Here is what Bob has to say...

There is a lot of anger and frustration and jealousy out there right now, over all the pink. It is Breast Cancer Awareness Month. And Susan G Komen Foundation is simply everywhere. I know you know this. Does it piss you off, get you mad? Does it get you so sick you could puke?
So what.

25 years ago, Nancy Brinker lost her sister to breast cancer. She made a promise to her dying sister to do something. She sure as hell did. Congratulations Nancy. You have build an unbelievable organization from scratch. You have funded over $1 BILLION towards curing breast cancer. Truly an American grassroots success story.

My point is this. Misplaced anger will not cure childhood cancer. Jealousy is part of the problem with funding now, why organizations DON'T work. These emotions will get us no where. And believe me, I have every right to be pissed, and I am pissed, just not at Pink.

What we can do is learn. How did she do it? Actually, Sweet Lily's Dad has pointed out that her original model was based on AIDs activists in NYC. She built a group, organized and steered it. And now, has millions of men, women and children supporting her cause. Unreal. So, instead of being angry, I am going to try to learn from them. And, further, what better alignment - Mom's that are already activists and kids fighting for their life's. Each and every Mom and Dad reading this would trade places in a heartbeat, why would breast cancer Mom's be any different?

So, next time you see pink, don't get mad. Check em out. Ask em if they can help. Tell em about PAC2, I have. Actually had some good initial talks with them and will be meeting with them soon......hey, stranger things have happened.

Look here....maybe join up and post your own note - I'm certain you will find others in your area....http://apps.komen.org/forums/tm.aspx?m=257590&high=pediatric

This is my post on the Komen boards....

AN OPEN LETTER TO MOM's FIGHTING FOR BREAST CANCER AWARENESS AND FUNDING

Imagine an intruder in your home. Imagine you are there with your children. Imagine that intruder attacks. What would you do? I think your answer would be to throw yourself in front of the intruder to protect your children. And, if you had to, I imagine you would give your life to protect your children.

Unfortunately that intruder, cancer, intrudes on far too many homes. I think most of you think you are "home alone" with that intruder. But the truth is your children are home too.

October is Breast Cancer Awareness Month. September was National Childhood Cancer Awareness Month. How many of you Mom's fighting for awareness and funding for breast cancer knew that? How many of you know that:

Childhood cancer is the number one cause of death from disease for our children, killing more every year than asthma, diabetes, cystic fibrosis, congenital anomalies and pediatric AIDs COMBINED!
About 1 in 300 children will be diagnosed with cancer before age 20
1 in 4 or 5 of those children will not survive
60% of the survivors have long term health problems (secondary cancers, major organ problems, developmental issues) from the "down-sized" adult treatments
All 12 major types of childhood cancer receive less than 3% of federal and private funding
Simply put, both awareness and funding for childhood cancer is woefully inadequate.

About 25 years ago, awareness and funding for breast cancer was woefully inadequate. So I applaud and support the efforts of Susan G. Komen to fight back. You and your supporters have done an unbelievable job. And just to be very clear, last month I lost my Mom to breast cancer.

But I am simply asking that now and next September, you also consider supporting childhood cancer awareness and funding. Look into CureSearch, People Against Childhood Cancer, St. Baldrik's, Alex's Lemonade Stand's, The Pediatric Brain Tumor Foundation and the many other fine organizations fighting every day for our kids.

For my wife and I, sadly it is too late. On January 5, 2008 we lost our son AJ to childhood cancer. Before Fathers Day 2007 AJ was simply another happy, healthy, athletic, joy to be around young man looking forward to high school. That all changed overnight. And our lives are forever shattered by the loss of our future. We are not widows or orphans; there is no name for us. But I told AJ we would fight back. And I am seeking help from you.

Who knows, your support may help may save a child, god forbid; your own.

Bob Piniewski
Founder
People Against Childhood Cancer

Prayers for Sam Owen & Mason McLeod

2009-10-08T12:35:00.006-04:00

Sam Owen has Burkitt's. He received his bone marrow transplant. But the cancer returned into his central nervous system. His family in on top of everything, but they are now faced with decisions that no parent should have to face.

The truth is, with cancer, there are no absolutes. There are no answers. You study your options, you love your child, and you make your decisions. And you pray. Like Miles Levin said, "Keep fighting, but stop struggling".

As for us, we need to keep them in our thoughts and prayers, and support them in every way possible. Sam's mom wrote, "There are no right or wrong ways to be now, but there is right for us, and we have found it, and we're sticking to it."

Sam's blog is samuraistrong.blogspot.com

Mason McLeod continues in his long fight. Doctors have lost hope again...but that is getting to be an old story. They have lost hope many times over the past 19 months. But Mason continues to prove them wrong.

Mason's dad continues to fight on every level, leaving no stone unturned. When fighting for treatments for Tyler, I was accused of having lost my mind. They said I was insane to push so hard and dig so deep. Well, maybe. But remember that Tyler is alive and healthy today. Every child is different. Every cancer is different. Every family must find their own answers. Mason refuses to lose.

Children don't stop and give up. They push and they push and they push forward in the human spirit of life. It is everywhere here. Adults project despair where children manifest faith. -- Jodilyn Owen

The human body can last roughly 30 days without food. The human condition can last roughly 3 days without water. But no human alive can live for more then 30 seconds without hope, because without hope we have nothing. -- Sean Swarner, first childhood cancer survivor to reach the summit of Mt. Everest

We have two options, medically and emotionally: give up, or fight like hell. -- Lance Armstrong

Why are they giving up on me, when I still want to fight? -- Brett Workman

I'm in rough seas now, with a cancer weight clasped around my ankle, pulling me down beneath the waves. I’ve come close to drowning a couple times, but lately it looks like all this furious kicking might just bring me back to the surface, at least for awhile…Hopefully someone will come through… We’re in a period of uncertainty, which is better than being in a period of certain hopelessness. -- Miles Levin

We are just kids we are supposed to get to have fun and be able to go to school and spend time having lots of fun and worry our mama's when we are late coming home, to have our first kiss, to grow up and have kids that our parents can spoil. Not to be sick everyday. Not to be fighting cancer. Not be told sorry we can't do anything else for you. Not to be afraid.--Sinjin Andrukates

Brett's Challenge

2009-10-06T09:37:00.011-04:00

I have come to know a lot of heroes. My son is one of them. And, like my son, the others have all fought battles on the pediatric cancer floor. I am amazed and inspired by all of them.

However, because of my son, I tend to connect much faster with the teenagers. As I have watched and learned from them, I have been amazed at their unique attitude toward their situation.

These adolescents bring a very special perspective on life. More so than their younger counter parts, they have a full adult understanding of their life and death struggle. But unlike their older counterparts, they have not yet fully experienced life. They are full of dreams of the future, real dreams about what they will accomplish, who they will love, and the life they will live. They are just beginning to visualize it all, seeing everything just beyond their reach. And then cancer comes, attempting to destroy all those hopes and dreams before they can ever be realized.

It is from this unique perspective that these young people fight for their lives. And as they fight, they share the most incredible insights on life itself. It is an amazing experience to talk to someone who has a beautiful and untarnished view of the opportunities in this life, along with a knowledge that they may never partake in those opportunities. Someone who knows of love, while knowing they may never experience love, marriage, or children. Someone with glorious dreams, knowing those dreams may never be experienced.

It is amazing to hear their thoughts. Miles Levin described dying as a teenager as a blessed curse. A special opportunity to see things in a new light. They have so much to teach us. These young people are actually us, in our purest form, before we were tarnished by the distractions in life.

Brett Gosnell was diagnosed with cancer as a teenager. At 20 years old, 6 days before his death, Brett wrote a challenge about how we spend our time. I never meet Brett. But his words articulate the message I have heard from some many of these young adults. Even as all their options are gone, they live with hope and optimism. They continue to believe in us and our ability to change the world. They believe in our ability to fight until we win.

Here is Brett's challenge to all of us.

I am not here physically, but I am looking down from heaven on this assembled group. I challenge you to adopt a new goal, a new way of life for yourself. Put helping, caring about, and serving others at the center of all that you do—not just for today or tomorrow but for the remainder of your life.

I ask you to look for ways in which to make a difference in the lives of others, regardless of who they are or where you find them. They are God’s children and they need us. We must turn away from thinking only of ourselves and remember that each one of us has a capacity for doing something. Discover what you can do—and do it. I ask you to do that.

But there is something else. In the act of helping others, think of this. It was my desire to make a difference, and I tried to do that in the opportunities that were given to me. There was so much more that I wanted to do, but I will keep my eye on you from heaven. Now you can pickup where I left off and serve so many others.

Hear this plea and respond to it. This is your friend who asks you to accept this challenge. Do something meaningful with your life. After all, that is how you can most honor me and my life.

--Brett Gosnell

If you have learned anything from me through all of this, do something with it to make a difference - to make things better.--Melissa Sengbusch

If my struggle with cancer galvanizes actions of goodness, I can rest assured that even if I succumb to the rogue cells, I will leave behind a legacy of victory. Dying is not what scares me, it’s dying having had no impact. I know a lot of eyes are watching me suffer; and---win or lose---this is my time for impact. If there be a purpose, then this is my hour. I have tried my best to show what it is to persevere, and what it means to be strong. -- Miles Levin

Cancer-I intend not only to beat you, But to better the lives of everyone I can: By loving them, encouraging them, giving Them information, making them laugh, Praying for them and by any other Means I can Cancer, you are not the end. You are merely my opportunity to serve Others and perhaps my only chance to attain At least some small measure of heroism. --Mark Hartwig

Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!--Jake Silberg

How wonderful it is that nobody need wait a single moment before starting to improve the world.--Ann Frank

Please continue to pray for Mason McLeod, as he fights on the front lines of this horrible disease. He refuses to lose. He fights to win.

The Miracle of Time

2009-10-01T10:07:00.011-04:00

"So once again we have been blessed with the miracle of time; time to cherish those around, time to bask in the love and support of family and friends, time to give as much as we receive, and time to enjoy the company of a special young man.
I hope you enjoyed your weekend as much as we did, I hope you reveled in each moment, and made the most of the precious time we share with each other. But most importantly, I pray you were thankful for each of the small blessings bestowed upon you."

A great statement. Everyone would agree with those words. But the words carry more impact when taken in context. You see, they were written yesterday by the mother of 14 year old Tyler Genneken. Tyler is battling relapsed leukemia, and treatments have not worked.

When Tyler realized his time was running out, he set two goals. The first was to save others from suffering, by getting more donors in the National Bone Marrow Registry. The other was to live to see his brother get married.

His family put together a bone marrow drive with the expectation of 100-150 new registrants. The event was held this week-end, and they registered 1,450! The next day Tyler stood in front of the church, as the best man in his brothers wedding.

Now the family joins together, surrounding Tyler with their great love and faith as he struggles through the pain. Do Not Resuscitate orders have been signed. In that context, the family wrote the statement above, counting all the blessings they have received.

As I read their words, I am filled with questions. How did I spend my week-end? What lives have I blessed? What good have I accomplished? How did I use my time? I know 53 children who did not live to experience this week-end. How have I used the time they did not receive, but I was so freely granted? Have I been thankful for all the blessings? Tyler Genneken has used his few remaining days to save others. His family has joined in that effort, and continues to count their blessings. So what have I done with my time?

This is the beginning of a new day. God has given me this day to use as I will. I can waste it or use it for good. What I do today is important because I’m exchanging a day out of my life for it. When tomorrow comes, this day will be gone forever. Leaving in its place that which I have traded. I want it to be gain, not loss. Good, not evil. Success, not failure. In order that I should not regret the price I paid for it. Because the future is just a whole string of nows.--Lou Holtz

Look carefully then how you walk, not as unwise men, but as wise, making the most of your time.--Ephesians 5:15-16

We are embracing our moments- Not dwelling on the past nor being anxious or worrying about the future at this moment. We are giving our full attention to the now and letting go of any outcomes. Rather than seeking quantity of time, we're enjoy and are savoring every single minute.--Dawn Harris, shortly before her son, 10 year old Seth Harris, died of complications from cancer

The present day is important to you for this reason: you can waste it or use it, but no matter how you spend it, you've traded a day of your life for it!--Zig Ziglar

You have a gift and you best start using it,
Cause if you don't, your gonna wind up losing it.
So get busy like a school boy making an "A",
Cause time my brother is ticking away.
--DC Talk

With the clock of life continually running, can you really afford to wait?--Daniel Drublin

The clock isn't slower, your just faster.--Adidas Slogan

And you run and you run to catch up with the sun, but it's sinking.
Racing around to come up behind you again.
The sun is the same in a relative way but you're older.
Shorter of breath and one day closer to death.
--Pink Floyd

Act now. For now is all you have.--Og Mandino

I close my eyes, only for a moment, and the moments gone. -- Kansas

If you are looking for a great way to spend your time, how about registering to become a bone marrow donor. It is very easy. And you might just save a life...how cool is that?

To sign up to save a life through the National Bone Marrow Registry, please click here.

Childhood Cancer: A Nightmare Scenario

2009-09-25T15:01:00.004-04:00

From the St. Petersburg Times...

Is today the day?
Is today the last day I will have with my child,
our dreams shattered and lives forever changed?

In a perverse reversal of anticipation from the day a child is born, these unimaginable questions are circling the minds of some unfortunate parents all over the world as they watch their children die from cancer.

It goes against nature, against all of our expectations, to watch a child die. And yet it continues to happen — statistics say anywhere from 1,500 to 2,500 children die from cancer each year in the United States. Maybe that doesn't seem like many, but believe me when I tell you one is too many.

These parents are from every race, creed, geographic region and socioeconomic class — their child has been picked in a very unpredictable and random manner because, according to the American Cancer Society, childhood cancer is still quite rare.

You may wonder who they are and how you can avoid becoming one of them. If only there were an answer. I write this knowing all too well the horror of this situation because I am one of them.
My husband and I experienced the unimaginable on May 9, 2006.

Our son Zach was diagnosed with cancer at the age of 8, and every day after that diagnosis, I lived with those horrible questions in my head. Our answer came 10 months after his diagnosis when he took his last breath.

Childhood cancer is a war going on all around you. It's not in some faraway place, but right in front of you. If you have no one close to you in the battle, you may be unaware of the impact. Cancer rips these kids from their normal existence in an instant and throws them into unfamiliar territory filled with suffering and pain. Their lives are turned into a nightmare of needles, pills, MRIs, chemotherapy and radiation . . . things no child should ever have to face. There are some victories in the battle, but unfortunately, the war is far from over.

Since July 2005 when Zach was diagnosed, I have lurked near the frontlines of this battle watching its devastating effects. He joined the 12,500 other young warriors that were diagnosed that year. There are few new types of treatment available to young patients. And we were woefully unprepared for what course of action to take. But he, just like all his fellow warriors, did not let that affect his courage. He faced his diagnosis with a strong determination and optimism.

Zach was too busy fighting to see that adults seemed to have many more treatment options to choose from — but we noticed. Very little money has been devoted to building up the weapons for many forms of childhood cancer. It is true that there have been wonderful and amazing advances for some types of childhood cancer, but it is not enough.

Childhood cancer is the leading cause of death by disease of children under the age of 15. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group except those over 65. And yet childhood cancer research is vastly and consistently underfunded every year

September is National Childhood Cancer Awareness Month. Take the time to recognize these very brave children all around you by joining the fight. There are many ways to help through local and national organizations dedicated to helping these kids and their families. They need your time, money, prayers and toys. But most of all, they need your voice.

Write Congress to demand full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act. The current proposed funding is $10 million. Surely, after spending billions on used cars, our government can spare a little change to save our kids.

Sherry Tucker of Valrico, author of "Unfinished Love — Walking by Faith through Pediatric Cancer" and founder of the Giving Hope Through Faith Foundation, lost her son Zach to a cancerous brain tumor in 2006. Go to www. givinghopethroughfaith.org for more information.

Are You Aware?

2009-09-24T11:22:00.001-04:00

This is floating around many cancer sites...and it's worth the read.

September is a disease awareness month, which you probably recognized by the gold ribbons displayed on all the corporate advertising on TV and in magazines and the special media reports.

What’s that? You haven’t seen any? That’s because, for some reason, this class of diseases attracts hardly any public attention.

If I said “pink ribbon,” you would have immediately thought of breast cancer. “Red ribbon” might be a little trickier, but eventually you would have come up with heart disease.

But the gold ribbon is nearly invisible.

It represents childhood cancers.

Today, as you read this, the equivalent of a classroom full of children will be diagnosed with cancer in the U.S., more than 12,400 a year. About 4,000 child cancer victims will die this year, making cancer the number one disease-related killer of children under 14.

While 75 percent of childhood cancer cases are curable, for some forms, a cure remains illusive.
Only one new cancer drug has been approved for pediatric use over the past two decades. For some of the rarest, but most deadly, childhood cancers, no new treatments have been introduced in more than three decades.

For every one child diagnosed with pediatric AIDS, 15 children are diagnosed with cancer, yet available funding dollars designated for research are vastly disproportionate: $595,000 for each AIDS victim and only $20,000 for each pediatric cancer victim.

Federal funding for breast cancer research is more than double that for all 12 major groups of pediatric cancer combined.

The end of September is approaching and Childhood Cancer Awareness Month has passed, largely unnoticed by society. The rush to shower us with pink in recognition of Breast Cancer Awareness month is reminiscent of the crowding away of pumpkins and scarecrows by Christmas trees and snowmen.

Except there's no pushing gold aside. The way is clear for pink.
Even the American Cancer Society -- the outfit that professes to represent all cancers and provide support for everyone affected by the disease -- the organization for which we all come together and raise funds by holding a Relay each year -- has chosen not to recognize Childhood Cancer Awareness Month.

Go to www.cancer.org and what do you see? The banner at the top of the page is pink and touts the ACS' commitment to fighting breast cancer.

What if the focus that remains on breast cancer was turned to pediatric cancer?
I know millions of women are affected by breast cancer. But almost all of them are effectively treated.

Only thousands of kids are affected by cancer. But many -- perhaps most -- of them die.
I am grateful for the pink that signals the arrival of October in our day and time. I just wish there was a wave of gold -- more in terms of funding for research, but also in terms of awareness -- to usher in the pink.

If you are reading this, you know. You have traveled this tragic journey with us and you are aware of the impact of pediatric cancer on families.

Will you spread the word to someone who doesn't know today? Send an e-mail. Copy this to your blog, your facebook, your twitter. Write a letter to a corporation or a legislator. Or to an editor."Please do whatever it takes to get the word out. Our children are our future. We need to help give them a chance to live. We need a lot more funding going to childhood cancer research.

Please help.

Thank you.

The Courage to Fight

2009-09-16T14:17:00.006-04:00

I have meet a lot of incredible kids over the past two years. Their strength and their courage is incredible. They fight the cancer in their body on every possible level. Not one of them, at any time, has ever quit.

And when in comes to courage, there is a truth that I have learned from these amazing kids. Sometimes fighting means to pursue every possible medical option. But there are also times when it takes as much courage to stop the endless medical struggles.

With Tyler, we never stopped. We had problems and severe setbacks, but we also always had our plan "B", "C", and "D". Tyler went into remission before we exhausted every option. But that is not true for everyone. Far too many parents exhaust every reasonable option, and are faced with the most horrific decision of their lives. Some will continued against seemingly impossible odds. Others decide to back off, spending their final days together in light of medical realities. So how do you make those decisions?

The best advice I received was from Dr. Rything at MD Anderson, who said, "Have no regrets". Each parent must research the data, search their hearts, and love their child. And then, with the greatest levels of love and courage, they make the decision. Once made, none of us outside the family has the right to judge that decision. Our sole responsibility is to love and support them.

I have been very critical of doctors that pressure families to give up before they are ready. I encounter some of them, and believe they should be removed from the medical profession. Doctors must provide complete and honest information. Parents must remain fully informed, leaving no stone unturned. But learning everything does not necessarily mean pursuing everything. And as much contempt as I have for certain doctors, I must also respect families with the courage to stop. It is a family decision, involving the mind and the heart, both the medical facts and the human spirit. The decision requires a level of courage and love that is beyond anything the rest of us have experienced.

Sinjin put together the following video. Each of these young men and women lot their lives to cancer. Some fought medical battles to the end, with their parents at every step of the way. Others reached a point of saying "this is enough", again with their parents by their side. But every one of them fought with courage. Not one ever gave up. Not even for a moment. They are all heroes.

Make video montages at www.OneTrueMedia.com

Intolerance

2009-09-13T16:40:00.001-04:00

I have a confession to make. I used to believe I was protected. I could have everything I wanted. I've worked extremely hard, have thought through my decisions, and aggressively pursued my goals. I've always had a clear vision of my ideal life, family, and friends. And, over time, all of those goals were achieved through focus, hard work, and discipline.

Even when Tyler was diagnosed, I approached his cure in the same manner. I knew I could beat this. I'm not better than anyone else, but I do tend to be a lot more focused (Kathy calls it obsessed). With total focus, the elimination of all distractions, anything can be achieved. I set out to beat Tyler's cancer just like every other obstacle that has come my way.

I started by searching out other teenagers with cancer. One of the first was the family of Christian Barker. I never meet them, but their aggressive and proactive approach to save their son was just like mine. I saw pictures of their children, home, and lifestyle. They are just like us. Obviously their son would survive. Then came the families of Chase Donnell and AJ Piniewski. Educated, intelligent, successful, involved. They asked the right questions and researched the right places. Everything was done right.

But soon I learned the reality of cancer. A month after Tyler was diagnosed, Christan Barker passed away. It made no sense. Something was wrong. This is not supposed to happen. His death was quickly followed by AJ and Chase. Then, here at Children's, followed by Rob Kemp and our dear friend Brett Workman.

That was 18 months ago, and the list is still growing. Mason Woods, Trey Martins, Cameron Brown, and our good friend Ryan Salmons. On and on and on.

Matt Hupp's parents searched everywhere. Even as he went safely into remission they continued to cover all their bases. Zac Mason's dad called hospitals everywhere, searching into every clinical trial. Racheal Tippie's mom found a new trial and moved to Texas. They did everything right. But they all relapsed. Matt passed away last month. Rachael and Zac earlier this week. Sometimes with cancer, giving all you have to give is still not good enough. How do you fight something like that? Fighting cancer is like that Bob Dylan song, "When you've got nothing left to lose, you find out you can still lose a little bit more".

There are success stories. Tyler fought hard and beat the odds. As did Sinjin, Kylee, Tristan, and many others. You can win. It takes incredible fight. But it requires more. It also requires the fight of everyone else. It requires all of us.

Mason McLeod is fighting now. Several doctors have said there is no hope. They are wrong. They're confusing hope with statistical probabilities. Hope is not a scientific word, and requires no scientific evaluation. New treatments arise from the lack of hope, being created when existing medicine offers no hope. It is not a doctors place to tell an 11 year old boy to go home and die. Survival requires everyone fighting together.

So now I know the truth. Tyler has survived. But he was never protected. Cancer has no favorites. No one is exempt. No life style can protect you. No economic status, religious or political positions. Childhood cancer has complete contempt for everything we value. It is intolerant of everything we hold dear. Nothing will protect you. Nothing other than a total elimination of cancer from this world. It's time to focus. It's time to kill cancer. It's time to fight for the funding, resources and information we need to win. It's time for total intolerance toward anything that gets in our way.

We must become intolerant of poor government funding, intolerant of the petty private funding. We must be intolerant of politicians who approved a $30 million Childhood Cancer Act during election years, and refuse to fund the money after the election. Intolerant of the inaccessibility to clinical trials, the assembly-line protocol treatments, and doctors who withhold information about treatments at other hospitals. Intolerant of insurance companies that block treatments, dictate protocols, or stop payments midway through treatment.

We must demand more individuated treatments, more access to experimental drugs, more free flow of information between hospitals, greater access to new treatments, greater access to research data, full disclosure from doctors. We must support the families, eliminating every distraction as they fight for their children. We can beat cancer, but it must be beat the same way it fights. Total war. Total intolerance.

Mason McLeod can beat this. It will require everything he and his parents have to give, just as they have been doing for 18 months. But it will also require the rest of us. We must force doctors to work outside the box when the box stops working. We must discover more options and share them among ourselves. We must find the best doctors and share that information, creating a "Craig's List" for pediatric cancer.

Look at these young people. Look into their eyes. All they ever wanted was to live the life that you and I are living. As I look at them, I wonder. I wonder if they look back and ask, "What are you doing with your precious and wonderful life? What are you doing to earn what you have been freely given?"

Christian Barker

AJ Piniewski

Chase Donnell

Matt Hupp

Zac Mason

Brett Workman

Ryan Salmons

Cameron Brown

Trey Martins

Zac Mason

2009-09-09T20:47:00.004-04:00

This afternoon, with his father by his side, Zac passed away. He fought very hard. He never gave up. His father left no stone unturned.

But sometimes, with cancer, giving everything you have to give is still not good enough.

But tonight Zac is cancer free. And we are left here. Look into Zac's eyes.

There is no reason for this. There is a cure. There is an answer. We have not found it because we have not dedicated the necessary resources. We allow politicians to create trillions in debt, but ignore needed research. We allow them to unanimously approve $30 million in research during election years, and then refuse to fund the spending after the election.

These are our children. This is our obligation. So look at Zac. Remember his fight. Remember his courage. Remember the loss of over 1,500 children every year. If you believe too many have died, if you believe it is possible to end cancer, then look into his eye's and say to yourself, "If it's going to be, it's up to me!"

September Awareness

2009-09-03T21:58:00.001-04:00

September is Childhood Cancer Awareness Month.

So, are you aware?

Are you aware that Zac Mason has endured months of chemo and radiation and beat cancer? He then beat a relapse of the same cancer. The then survived a stroke that paralyzed his left side. He survived countless side effects as the poison of chemo assaulted his small body. He survived ICU, a place from which many cancer kids never return. And now he is fighting for his life against a fungal infection. His body have no immune system, and the doctors have no meds. Zac is on his own, with his father by his side. That is the true story of cancer. His father begged and pleaded and searched. Never faltering, never losing hope, fighting for Zac at every step. But tomorrow morning doctors will walk into the room. As they do, they will ask for DNR signatures. Do Not Resuscitate. Were you aware?

Are you aware Mason McLeod has battled 18 months against Burkitt's, the most aggressive disease in the world cancer? Relapses, surgeries, coma, spinal taps, radiation, chemo. And still he fights. Doctors gave up and insurance turned their back, but Mason fights on. His father searches the world for more options. His mother prays to God. They do this because they both know Mason better than the doctors. They know the spirit fight inside Mason. And now, as options continue to fail and cancer continues to relapse, Mason and his father board a plan for New York. One more option. One more chance to fight. No promises, just searching and praying for hope. Were you aware?

Are you aware that Matt Hupp beat cancer? He received incredible volumes of chemo to kill Burkitt's Lymphoma and Leukemia. He fought to get back to school, just before the last days of school. He fought to re-join his friends, as they threw a "Last Chemo" celebration party. His parents searched everywhere, called everyone, covered all the bases. But as summer arrived, Matt relapsed. As summer ended, Matt passed away. With cancer, sometimes, giving your very best...giving all you have to give, is simply not good enough. Were you aware?

Are you aware? There are are many people who, until recently, could have never imagined the following words. Not long ago, they were just like you. In their worst nightmares they could never imagine writing these words. Not long ago, they were unaware.

For the last two years, my right shoulder has really ached. It came from throwing thousands of footballs to my 14 year old son AJ. My new problem is that over the past month or so, my shoulder has slowly but surely stopped aching. Now what keeps me awake at night is my broken heart. You see, I have no one to throw those passes to, no one to brush back anymore. Because AJ left us on January 5, 2008, a victim of childhood cancer.

--Bob Piniewski, father of AJ.

My tears are coming more frequent and at times uncontrollable. I can't imagine this pain going on the rest of my life. The pain and guilt are like a knife in my heart. My son wanted to live. His words keep echoing in my head. He asked me why the doctors was giving up on him when he still wanted to fight. He wanted to live. So many "what ifs".

--Shiryl Pauley, mother of Brett Workman, who died at 17 of Burkitt's

The anger, frustration and disbelief continue. The pain is still as raw as any wound ever inflicted and the tears still flow freely.
-Jon Agin, father of 2 year old Alexis, brain tumor patient

Hi, my name is Cody. I am 12 years old. I love to be outside playing with my friends or just watching the airplanes. My dream has always been to join the air force and go to West Point Academy. I have a love for planes, and one day I will my own airlines. I was just diagnosed with Ewing's Sarcoma. Well this is just a little bit about me. I will update my page as much as I can.

--Cody Robinson passed away at age 13

My mind is a blur right now and my body and mind appear to be functioning independently. I felt this way in September when we learned of your disease. But the difference then was we had hope--we had a gameplan and a chance that things would be different with you. Today, we now know that this simply is not going to be the case--our hope was snatched away in the blink of an eye.

--Father of Will Hladun, sortly before watching his son die of cancer.

I want to spend some time in someone else's body.

--Jack Brown, 7 years old, last wish, two weeks before death from cancer.

The chemo and stem cell transplant were supposed to work. He was supposed to be cured. We were supposed to be done. No more chemo, no more hospital stays, no more blood transfusions, no more platelet transfusions, no more pokes and sticks and IV poles and masks. No more. I am not the same naïve person that I was in the PICU a year ago. I know what cancer can do. I’ve seen families ripped apart by it. I’ve lost count of how many kids have passed away since we started this whole journey. I am scared out of my mind.

--Jen Barr, mother of Matthew Barr, fighting brain tumor relapse.

I know I will feel better getting out of the house. My mom told me if I want to go anywhere she will find a way to make it happen. The docs put me back on a steroids to help slow down the brain swelling. I hope nobody never has 2 go thru what I am. It is hard to stay positive. I know my mom is having a hard time. She is the toughest person I know, but she is tired. Whenever i wake up she is right there. Now she holds my cold hand and my dog lays on my cold feet.

--Josh Prunsky, died at age 12 of cancer.

I remember my first chemo round, staring at the ceiling and trying not to cry. The agony was stunning. I've long since learned to go ahead and cry. How could this have happened? Yet as with anything that happens, it happens, and then suddenly you find it has happened, and more things keep continuing to happen. Chemotherapy has instilled in me a visceral understanding that all bad things will pass in time ... but that all good things will too.

--Miles Levin, died at 18 of cancer.

There is a dark side to this story that never made the front page; the decay of Miles's body was dehumanizing, and it was a knife in my stomach to wave goodbye as the hand of fate dragged him far away from me. The sound of retching and moaning used to reverberate in the walls of our Jack-and-Jill bedrooms, but now the house beats palpably with his absence and his cries are echoes floating in the night that I can only hear if I listen closely.

--Nina Levin, sister of Miles Levin who died of childhood cancer

Today I re-activated his cell phone just so that I could hear his voice once in a while. I miss hearing his voice. I know it will hurt me but, I just had to do it.

--Robin Kizar, mother of Brenden, a 17 year old victim of Burkitt's.

I HATE having to pick out my sweet 14 year old sons casket, burial plot, headstone, music and pictures for his funeral. I HATE our "new normal," worrying about our other 2 kids and how they are doing, worrying about my marriage since we aren't communicating much, worrying if others are SO tired of seeing the sadness and yearning in my eyes, wondering what Christian would look like now and what he would be doing, yearning for his hug, smell, voice, smile, laugh, and an "I love you mom".

--Sandy Barker, mother of Christian, a victim of childhood cancer.

Are you aware?

Do Something Today

2009-09-03T15:39:00.004-04:00

September is Childhood Cancer Awareness Month.

Before it comes and goes, like it has in prior years, why don't you do something. This one is easy. It is put together by AJ's dad and People Against Childhood Cancer.

President Obama gets 10,000 to 15,000 emails and letters every day.
But, he only gets 1,000 faxes a day…..so….

One day…one Time….let’s double that number, triple that number….we can stand out, be heard, if we all do it together!

Fax the President and ask for a September ceremony in the Rose Garden honoring children during National Childhood Cancer Awareness Month. All on ONE day. All together.

When – Today, September 3, 2009 – all day

What - A short note faxed to 202-456-2461. (send a free fax at http://www.faxzero.com/ or http://www.myfax.com/free)

SAMPLE TEMPLATE: Quickly customize the first line of the following request. Add your name and fax it off.

RE: Nation Childhood Cancer Awareness Rose Garden Ceremony Request

Dear President Obama:

As the {FATHER, MOTHER, GRANDPARENT, AUNT, UNCLE, BROTHER, SISTER, COUSIN, FRIEND, DOCTOR, NURSE, DENTIST, PASTOR, TEACHER, PRINCIPAL} of {A/SEVERAL} childhood cancer victim(S) I am writing to request that you hold a ceremony in the Rose Garden in honor of September National Childhood Cancer Awareness Month.

Every year 12,500 children are diagnosed with cancer, and it is the leading cause of death by disease for children before age 20. 1 in 300 children are diagnosed with cancer before age 20 yet funding and awareness is woefully inadequate. This is not a “special interest group”. We are a large, diverse grassroots community passionate about providing all our children a stronger voice and assuring them equal access to research funding for Childhood Cancer. Our question on Increased Funding for Childhood Cancer was included in the Citizen’s Briefing Book presented to you by your Transition Team, question #5 in Health Care.

The awareness resulting from a ceremony would be a wonderful way to show your commitment to our future, our children. It would be an appropriate time to demonstrate that commitment by announcing full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act.

Thank you.

Warmest Regards,

YOUR NAME HERE

Go for it. Now. And never forget...

Cancer is the leading cause of death from disease in children between the ages of 1-19.
1 in 330 will be diagnosed with cancer by age 20.
More children die from cancer than from all other childhood diseases combined.
The incidence of childhood cancer has increased every year for the last 25 years.
Every school day, about 46 young people (2 classrooms full) are diagnosed with cancer in the US and that 7 will die each day.
The National Cancer Institutes federal budget is about $5 billion. Less than 3% of that goes toward all pediatric cancers combined. The rest goes toward adult cancers. Breast cancer alone receives 12%. Prostate cancer receives 7%.
At time of diagnosis in children, the cancer has already spread in 80% of the cases. That is compared to 20% in adults.
Young adults aged 15-22 have the lowest cancer survival rate of any age group.
Teenagers are extremely under represented in clinical trials for cancer, especially the 15-19 age group. They tend to excluded from both childhood and adult cancer studies, in both cases due to their age.
In the past 25 years there has only been one new drug treatment developed specifically for pediatric cancers. Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers.
For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
A 5 year study was recently concluded at Children's Hospital of Pittsburgh of UPMC, that concluded that teenage cancer survivorship is lower due to a lack of access to clinical trials.

Two Worlds

2009-08-27T22:02:00.007-04:00

Tyler has started his senior year of high school. He has a tough course schedule, but he will graduate with his class and be ready for college. The Ohio State University...following his older brothers.

It is incredible to watch Tyler. He is focused on his studies, going through prep classes for his ACT's. He is out with friends, playing football or basketball. This summer he passed me in height, now standing at 6'2". Last week someone came up to me at Erik's football game and asked how Tyler was doing. I said, "Ask him yourself," and pointed to Tyler standing beside me. They could not believe their eyes. There is no resemblance to the "cancer boy" whose picture was in the paper and on the news two years ago.

As we move on, I see a gap between our new world and the old world of cancer. I guess it is understandable. We have to go on with our lives. Tyler has a lot of work ahead of him to realize his dream of attending OSU. Brandon and Travis will soon be preparing for life after college. Erik is growing up fast, already in middle school and on the football team. I am still rebuilding my real estate business, after a year off due to Tyler's battle. And Kathy is managing the always busy household.

Our new world is full exciting new adventures. Our old world of cancer is full of pain. I want to just close the door, and forget it ever happened. I still get a lot of calls and emails from parents of children with cancer. I try to help, but it gets more and more difficult. Last week someone pointed out that I even stopped mentioning cancer when talking about marathon training. I did not realize it, but they were right. But I think it is very understandable.

It's natural to move on. Tyler is healthy now. And I'm not a doctor. What can I do help others? Nothing, really. I'm only one person. I did what I could. It's time to move on.

But then something happened.

Yesterday I heard about Matt Hupp, another teenager with Burkitt's. Matt's parents had contacted me back in May with questions about treatments we did with Tyler. I responded with some information, and followed up with them for a while. By early June, Matt was doing great. He was able to attend school just before summer break, where his classmates planned a "Last Chemo" party. In June Matt posted in his site, "On Tuesday it is officially summer!!!! I will also be getting my scans. If all looks good I will get my picc line out. Then I can finally go swimming!!!!! I like to thank you all one last time for helping me through this journey with all of your prays and support. Thank you!!"

All was great. Like us, Matt was moving into his new world of normal teenage years. I did not follow up with them any more. Then I learned yesterday that Matt Hupp passed away last Friday. Matt's parents had reached out to me, and to many others. They researched everything. They did everything right. I can not get his death off my mind. But what could I have done to change things? Nothing.

Last night I could not sleep. I could only think of Matt Hupp, a 14 year old cancer victim I had never meet. I got out of bed and looked at his pictures again. Why could I not sleep? There is nothing I could have done.

Then, about 2 AM, I recalled a conversation with Bob Piniewski. Bob compared childhood cancer to the tragedy of 9/11. Our entire nation poured out to support the families of victims of that tragedy. New laws were written. Federal commissions were created. Billions were spent. We declared war. We demanded changes to prevent this tragedy from ever repeating itself.

Each and every year childhood cancer claims as many victims as 9/11. But where is the support? An additional 10,000 survive the torture of cancer, many with life long complications. Who is fighting for these kids? As Bob asks, why is the entire fight left to the families? We didn't tell the 9/11 families to fight the war or protect the airlines. We did not tell them to chase down bin Laden or al-Queda. But we seem to expect that of the families of childhood cancer.

In the morning I received two more emails from parents asking questions. And another from Team in Training, asking about the status of my donations in the marathon run. Then came the email reminding that September is Childhood Cancer Month. Last year it made no headline. This year will likely be the same

Now I understand. There are not two worlds. There never were. I can choose to ignore, or I choose to fight. But we are all in the same world.

So what can only one person really do? I don't know. But the next email was a guy who raised $520,000 for childhood cancer research. Craig Goozee. He raised the money riding his bike across Australia after his daughter died of bone cancer.

So I'll enjoy my family, raise my sons, and love my wife. And I will respond to parents with questions, meet with kids, fight for childhood cancer funding, and run another marathon. A life worth living and a cause worth fighting. It's all one world...it always has been. As 18 year old Miles Levin said shortly before his death, "The time I’ve had has been enough—time enough to make the world a better place for having been here."

Matt Hupp

Take note-the measure that you give is the measure you receive.
Mark 4:24

Dying is not what scares me; it's dying having had no impact. I know a lot of eyes are watching me suffer; and -- win or lose -- this is my time for impact.
--Miles Levin

The needs are great, and none of us, including me, ever do great things. But we can all do small things, with great love, and together we can do something wonderful.
--Mother Teresa

God created man on purpose and for a purpose!
--Zig Ziglar

All you touch and all you see, Is all your life will ever be.
--Pink Floyd

Tell me, what is it you plan to do with your one wild and precious life?
--Mary Oliver

I am only one, but I am still one. I can not do everything, but I can still do something. I will not refuse to do something I can.
--Helen Keller

It's the journey that matters-mine and yours-the lives we can touch, the legacy we can leave, and the world we can change for the better.
--Tony Dungy

Zac Mason

2009-08-17T22:21:00.007-04:00

War.

They talk about the war on childhood cancer. I have used the phrase myself.

Wars must be fought to win. I see the children fighting to win. I see their parents fighting. And a small circle of friends and relatives. But I see little else.

40 years ago our government said they declared war on cancer. But I that that was a lie. we spend more on presidential elections than on childhood cancer research. Over the next month we will spend more money on a health care media blitz that we have spend on childhood cancer research in the past 10 years. A whole lot of talking, but very little doing. Last years $30 million Childhood Cancer Act has already been reduced to $10 million, and is still unfunded.

They have said war is hell. That it very true, but it is only understood by those effected. Our children stand on the front lines of the fight, staring into the face of hell. Parents are by their side, searching, pleading, and praying.

So how do you get people to support a war? I believe you do it with truth. No sugar coating. Just tell the truth. Here is the truth of cancer. Here is the face of cancer.

Zac Mason is in ICU. He has little movement on his right side because of a stroke. He has a drain in his brain, and platelet transfusions to dissolve the clot. He has two more IV lines and a 2 line broviac. He can feel the drain and new lines, and keeps asking what is going on.

He has been through 2 relapses and 3 failed re-inductions. His white blood count is zero. He has endured 9 rounds of heavy chemo in 14 months, including 6 induction or re-inductions, and 3 salvage therapies. He also has a lung infection, pneumonia, kidney lesions, and 80% leukemia blasts. Add then there is his stroke, his inability to move his right side, and his brain blood clot. And he continues to fight. He fights hard. He fights to win. He refuses to lose.

Matt is Zac's father. Matt does not leave his son's side. He searches for answers, he digs, he pleads, he yells, he prays. He then leans down and whispers to his son, "bear hug". Zac reaches thorough the maze of IV's and brain tubes, and squeezes his father with his one functioning arm.

He fights to live. He is at war, and war is hell.

This happens every day. Zac is a real boy. This story is true. So is Mason McLeod. And Rachael Tippie. And Matthew Barr. And Joe Friend. It happens every day.

How can we be so numb? How can we ignore the need?

Zac is fighting this battle today for one reason. We have not dedicated the necessary research funds to fight this war. Now Zac needs a miracle.

One day in the hospital another father told me that prayer does not change things. He said prayer changes people, and people change things. I don't know if it's always true, but I do know miracle happen more often when people step up to the plate.

Zac can beat this. Tyler went to the edge of hell, and came back. So did Tristan, Sinjin, and many others. Rachael was written off, and is now doing great. Mason McLeod has been written off several times, but is attending school today. Zac can beat this. But he needs your prayers. He needs your help.

This is war.

Mason McLeod, Rachael Tippie, Joe Friend, Matthew Barr. The list is endless. They continue to fight. Do not forget them. Do not leave them on the front lines all alone.

Leave Nothing On The Table

2009-08-08T14:42:00.002-04:00

How about a very cool story.

Rachael Tippie, about 4 months ago, was in a lot trouble. The doctors were discussing treatments that had words like "palliative", "compassionate", and "hospice". Innocent sounding words, but we all know the meaning. A kinder and gentler way of saying, "We give up". But Rachael and her parents decided to continue the fight. A new hospital, new doctors, new treatments. Leave no stone unturned. Leave nothing on the table.

Within a month, Rachael was walking around the hospital and eating pizza. They she was able to leave and move into the Ronald McDonald House. Then, this week, Rachael went into remission. She is now starting her life saving bone marrow transplant. Never say impossible.

And, just as a side note, the bone marrow is a perfect match from an unrelated donor in the bone marrow registry. A perfect stranger will now save her life. That could have been you. Sign up for the registry, and you could save a life.

Zac Mason continues his fight. And his father fights for options. A lot of decisions are being made. No one knows the right answers, but the decisions fall squarely on the family. All you can do is question and dig, and then follow your heart.

Mason McLeod is deep in a bitter fight. He has given everything to this fight for about 15 months. His family continues to search for options. Never lay down. Never give up.

Matthew Barr continues his fight, holding the cancer at bay. But the meds are still not able to kill the cancer. The fight goes none.

Joe Friend received great news for St. Judes a few weeks ago. The relapse was not as extensive as they had thought. The fight continues.

Please keep all these young people in your thoughts and prayers. Many decisions must be made by families during this battle. Decisions on hospitals, doctors, protocols, and even sometimes a decision to end the medical struggles. None of it is easy. And no one can judge or questions a families decision. They search for options, and then search their souls.

Team in Training:

14 miles. The most painful run of my life. Actually I only made it a little over 10 miles. It is the first time I did not finish my distance (I've felt like crawling a few times, but always made my distance). I'll go back out in the morning and try another 10 or so. My feet have never hurt so much (Some other place hurt as well, but it would be better not to mention them).

The good news is that I gave everything I had to give. I just keep repeating to myself, "Running can't kill me...I'll pass out first". When I got home, I told Kathy that was my new slogan. I thought it was very inspiring. She said I was an idiot.

If you want to support cancer research by sponsoring my run, please click here. Or go to http://pages.teamintraining.org/coh/columbus09/kalfriend

Teenagers

2009-07-31T11:28:00.008-04:00

Do you have a teenager? Ever get frustrated with them? Sometimes they can be a real pain.

Sleeping all day, never picking up, sometimes moody and grumpy. Attitude. Eating non-stop. Ignoring responsibilities, but always finding time to run with friends.

A mom, talking about her 14 year old son, said "Justin is always hungry, and has a tendency to forget he's even eaten. He seems to want company, but at the same time he doesn't. He sleeps most of the day. When he is awake, he's not the most communicative person around."

So how about this. The next time your teenager does something frustrating, something that makes you really mad, try doing this. Try doing absolutely nothing. Blow it off. Just walk up to them, give them a big hug, and tell them you love them very much. And whatever they did, just forget it. I don't care if it was a messy room, mouthing off, coming home late, or even if they took your new car without asking and wrecked it. Even a Porsche. Or maybe it was something worse. The world will not end if you let it slide this one time. They're teenagers. Acting stupid is in their job description.

If this is hard to do, just read again the quote from Justin's mom. You see, she is not complaining about normal teenage behavior. Justin has cancer. She would love to see him acting up like a normal teenager, acting just like your child or mine. But instead she spends the day hugging him and praying with him. Feeding and bathing him. Laughing, loving, and crying with him. And yesterday she held on to him as long as she could, as she felt him breathe his last breath on this earth.

So the next time you child frustrates you, the next time you get mad, just drop to your knees and thank God. Then go to them, hug them, and tell them you love them. Or why wait? Get up and do it right now. If they are with their friends, it's even better (you get to embarrass them). They will say that you are weird. So what. You're a parent. Being called weird is in your job description. Grow up and deal with it.

JUSTIN MICHAEL HUTCHINS

4/19/95 - 7/29/09

Zac Mason waits patiently as his dad fights for options. After waiting for two weeks, St. Judes has blown them off. Now the MD Anderson option has run into problems.

The unbeatable Mason McLeod continues his fight. Answers are not coming easy, but his fighting spirit never stops.

Matthew Barr continues to hold the cancer in check, but the medicine has been unable to knock it out.

Joe Friend, Rachael Tippie, and all the other kids. Please keep them in your thoughts and prayers.

Team in Training Update:

12 mile run this week-end. I have been hurting, so this is going to be a hard one. 195 training miles down, 339 miles to the marathon.