Victory Cruise

As we climbed off the airport shuttle bus, we saw a ship right in front of us. It was not our cruise ship, but based on the name, it could have been. American Victory. This was indeed our victory cruise. Three days before leaving on the cruise, Tyler received "all clear" scans. A long and difficult battle, but victory at the end. Always Fight to Win.

Erik, Tyler, Travis, watching the NBA finals on the ship...

Travis and Tyler "driving" the boat on our SCUBA trip...Travis and Tyler "driving" the SCUBA boat.

Then zip-lining through Belize...

...and celebrating my parents 50th.

That smile on his face is the result of victory in long and difficult battle. And it is the result of all the prayers and support from so many people. We thank everyone of you for those prayers and support. Always Fight to Win.

Please continue to remember Tyler, Kylee, Sinjin, Olivia, Jana, Tristan, and the other survivors. Remember they are here because of the support of so many people. The are here because this can be beat. We can find a cure.

And remember Brett Workman, Ryan Salmons, Cameron Brown, Mason Woods, Trey Martins, AJ Piniewski, Chase Donnell, Christan Barker, Jesse Doseck, and others. They remind us that we have so much more to do. They all fought. They never gave up. But the cancer was stronger than the medical technology. They remind us that we still have so much further to go.

And remember those in the fight.

Mason McLeod is undergoing tests today. He continues to fight Burkitt's. His family continues to fight for options. He has had some good days, but cancer can follow the good days with bad. Please pray for his results.

Rachael Tippie is doing so well, her bone marrow transplant has been postponed as she continues to get stronger.

Matthew Barr is in the terrible holding pattern where there seems to be more waiting than doing, more questions than answers. I hated those times, always preferring the fight rather than the waiting. But cancer sets its own rules. And Matthews Golf Outing is tomorrow. Pray for a great turn out (actually I forgot to sign up, so I hope they let me in).

Joe Friend is at St Judes, and is very excited about getting back into treatments. That may sound very weird, but it is true. As bad as treatments are, the waiting is worse. Just get going, and get it over with.

Zac Mason is fight hard. His father is working with doctors as they look into more options. New stratigies are tried...and then more waiting.

Justin Hutchins is fighting, but the struggle is getting more difficult. His family is by his side, now 7 weeks with only "comfort" meds. He has been fighting brain cancer for two years. All known medical options are gone, and further treatments have been stopped. Still, his family fights by his side. They pray with him. They hug and cry and laugh with him. They bath him and feed him. They hold him and love him. And they wait.

There is a cure. We just need to find it. Always Fight to Win.

Running for Cancer

Cancer acts very differently in young people than in older adults. They get different cancers, the cancers grow differently, and their bodies react differently. But very little research has been done to understand this reality. What is understood is that cancer is more aggressive in young people, and that their bodies can handle much more aggressive treatments. Therefore most childhood cancer treatments consist of injecting mega doses of adult chemo into our children.

But there is a problem. A big one. The average age of a cancer patient is 65, therefore very little research has focused on the long term effects of high dose chemo on young developing bodies. And, the data that does exist, is often only tracking the 5 year survival rate. But what does all this chemo and radiation do to the survivors of childhood cancer. Unlike the older adults, these young survivors need a body healthy and strong enough to survive another 50, 60, or 70 years.

The problem is that chemo does not heal anything. Chemo kills. Chemotherapy is a process of attacking the entire body with poison, under a theory that fast growing cancer cells tend to die before slower growing vital organ cells. This is why organ failure is one of the greatest concerns during chemotherapy, and causes almost as many deaths as the cancer itself. The amounts of chemo that is dumped into our children is incredible.

After using this strategy on children for over 20 years, it is just now being realized that chemo and radiation can create late term effects that begin to appear as they reach their adult years. Studies have shown that as many as 75% people who received high dose chemo and radiation as children and teens begin to have problems in their late 20's or early 30's. About 2/3's of them have severe complications, including heart and lung problems, secondary cancers, and organ failures.

So this is why I am running the marathons. To raise money for more research to find a better way. Blasting these young people with mega doses of chemo poison may be best available solution, but it is barbaric. And it will never provide ultimate cure for cancer. It is far too destructive to the rest of the body. There are many new ideas, but they are all lacking in funding. The answers are out there. We just need to find them.

The most promising research is in the area of "smart bomb" drugs, that can target and destroy specific cancer cells without effecting the rest of the body.

There is a chemo drug called Taxol. It is effective, but brings some very life threatening side effects. Researchers at the University of Central Florida have engineered nanoparticals that can carry a modified Taxol directly to the cancer cell without harming the healthy cells. They achieved this by attaching a folic acid derivative that cancer cells like to consume in high amounts.

It works like this. Cancer cells in the tumor connect with the engineered nanoparticles via cell receptors that function like docking stations. The nanoparticles enter the cell and release their cargo of iron oxide, fluorescent dye and drugs. The fluorescent dye and iron oxide allow doctors to use a MRI to follow the drug movement within the cells and observe how the tumor is responding. The nanoparticles are also biodegradable, therefore easily eliminated by the liver without effecting other tissues.

The research, begun 5 years ago, is very promising. But it will require a lot more time and research (which means money) before it will become reality.

In another "smart bomb" approach, researchers have spent many years studying a cancer therapy called "RNA inhibition", which stops the growth of cancer cells through double-stranded RNA fragments called siRNAs. In theory is should work, but they have not been able to get the siRNA's inside the cancer cells. The size and negative electrical charge of siRNA's prohibits them from entering the cancer cells.

Researchers at the University of California has discovered a small section of protein called PTD that has the ability to permeate cell membranes. They are now attempting to use PTDs as a delivery mechanism for getting siRNAs into cancer cells. Dr. Dowdy, head of the research team, said, "Cancer is a complex, genetic disease that is different in every patient. This is still in early stages, but I believe the siRNA-induced RNAi approach to personalized cancer treatment is the only thing on the table."

Again...all very promising, but more research (meaning more money) will be required to make this a reality.

So this is why I am running the Columbus and Tampa marathons. To raise money for more research. There is an answer out there. There are solutions. Our children are suffering because we have not dedicated the time and attention to finding the answers.


There are many great organizations to support cancer research. If you would like to support research into blood cancers (like Burkitt's), you can support my Marathon runs through the Leukemia Lymphoma Society by going clicking here. I have 1,000 miles of training runs, and two marathons. So far, I'm 118 miles into the training (wow-that sounds like a long way still to go). You can also keep up with my training schedule on the same running site.


So why is this important? Well, I admit it has become personal. We have lost lot of friends. Brett Workman, Ryan Salmons, Cameron Brown, Trey Martins, Mason Woods, Rob Kemp, and many more. We have good friends that are fighting, like Matthew Barr, Mason McLeod, Rachael Tippie, Joe Friend, and many more.


But most of all, it is personal because of Tyler. In 2007, he was diagnosed with advanced stage IV Burkitt's Leukemia and Lymphoma. The cancer had spread into every vital organ and 85% of his bone marrow. We found for drugs, we fought for information, we fought for new treatments, and we dug deep into the research. Then, just two weeks ago, finally in remission and off the "high risk" list, I went SCUBA diving with my healthy son. The answers are out there. We have to find them.

The King of Pop

The King of Pop is dead. You can not miss it. It is all over the news. The New York Times and The National Enquire carry the same headline. It's the opening stories on CNN and Saturday Night Live. I guess it only stands to reason. He was big. He was the King. Everyone wants more information, and the media is there to serve our desires. Remember, the media exists by selling advertising space, and the more we watch, listen and read, the more they charge for advertising. If Michael Jackson and all his fanfare is what we want, than Michael Jackson is what we'll get. He' part of our lives, because we all grew up with him (although I recall spending more teenage years thinking about Farrah Faucett than Michael Jackson).

He is big. But as I watch the news, I wonder about the stories that do not get attention. The stories that are quiet, with no fanfare of commotion. The ones that will not sell enough advertising dollars to attract the big media outlets. I would to share a few of those stories.

Brett Workman had Burkitt's Lymphoma. He still wanted to fight, but the doctors and insurance companies did not. Although there were more options, he was sent home with hospice. The last time I saw him alive, being taken off the cancer floor, he lifted his head and said to the nurse, "Thank you for all you tried to do to save me. Thank you very much".

AJ Pinewski had Burkitt's Lymphoma. The Make-A-Wish Foundation granted his wish for a ski trip. But due to complications, the trip was canceled. As AJ saw how things were going with his treatments, he contacted the foundation and changed his wish. Diamond necklaces for his mother and sister, wrapped around a stuffed bear. His wish was to give them a gift. The gifts arrived the day after AJ passed away. Then, not many weeks after losing his son to Burkitt's, AJ's dad and aunt Connie walked into MD Anderson to sit and encourage Tyler and I as we battled the same cancer. A true friend.

Ryan Salmons had his world turned upside down with the news of cancer. But over the course of of the next year, I saw an him transform into a young man of incredible strength and determination in his fight to beat cancer. And then I saw his courage, as another relapse ended his medical struggles, and he choose to live his last month on his own terms.

Joe Friend beat cancer and left Children's just before we arrived. Cancer had taken his leg, but never his joy and enthusiasm. Then, just as Tyler was going into remission, we heard Joe was getting married. But just before the wedding, Joe relapsed. Now, with his bride by his side, he is back into the a war he thought he had won. And his smile never ends.

Seth Harris had Leukemia. He beat it, but it returned. He never faltered as he endured incredible side effects from the chemo. Then the liver disease set in. An experimental drug existed that could save him. Thousands rallied to his support. But hospital and insurance politics used their bureaucracy to stall the expensive treatment. Seth passed away as life saving treatments were withheld.

Jake Silberg had Burkitt's Lymphoma. One day, as he was fighting for his life, he stood on his bed and wrote on the ceiling a message we would see whenever he opened his eyes, "Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!" Jake is now in remission and currently touring Italy, courtesy of The Make-A-Wish Foundation.

Zac Mason was diagnosed with Leukemia last summer. He beat it, but relapsed in February. And relapsed again in April. They have dumped almost every type of chemo into his body, and are now just mixing up the chemos in different ways. Still, he continued to fight. Every single day.

Rachael Tippie beat Leukemia, but it came back. Doctors said it could not be fought again. They were very sorry, but it was time to die. But her family said no. So they backed her up and found a doctor willing to fight. Given the opportunity, Rachael began to improve. She is now doing great, and is about to be released to the Ronald McDonald House as she waits for her bone marrow transplant.

Mason McLeod has Burkitt's. He has been written off before, but continues to fight. Then his insurance company turned on him, refusing to pay for necessary treatments. But family and friends rallied, and forced a reversal of the decision. Mason continues fight as he waits for his bone marrow transplant.

Matthew Barr beat Leukemia. Then, as his family was leaving for their Make-A-Wish trip to Disney, the cancer returned. But Matthew stands strong, as he perseveres so many unknowns. Unfortunately, insurance companies do not always have the same perseverance. The family has been told they have reached the life time cap in insurance. They are on their own.They are having a Golf Classic Fundraiser July 10th.

Mason Woods had Leukemia. He fought a very long and difficult battle. Mason never wavered. He never quit. But slowly it became clear that the current medical technology is not sufficient to save his life. But I think, on some level, he understood more than most of us. Not long after Mason passed away, his father found a drawing Mason had left for him. It was a drawing of a large smiling Mason, with angel wings, watching over his father.

Justin Hutchins has been fighting brain cancer for two years. All known medical options are gone. So his family fights with him at home. Hospice was offered, but felt too much like a nursing home. How do to send your 13 year old son to a nursing home? So they stay home. They hug and cry and laugh. They bath and feed. They love. And they wait.

Josh Prunsky fought a long battle with cancer. But through his fight, his primary concern was about his mother and all she was doing as a single parent of a child with cancer. His requests for prayers we always about her. Then he relapsed again. In one of his last updates before passing away, Josh asked for prayers that the doctors would find answers, saying, "I do not want my mom to be alone."

I could go on for hours. Chase Donnell, Cameron Brown, Christian Barker, Trey Martins, Sinjin Andrukates, Tristan Saputo, Nicholas Timbrook, Matt Hupp, Olivia Mallott, Kylee Bornhourst, Alex Pothast, Brayden Bueter, Olivia Lanwasser, Robbie Kemp, Jana Stonecker, and so many more.

I guess these stories are not big enough for the headlines. They don't sell ads. They don't shout and scream. They are not full of noise and fanfare, glitz and glitter. They are just young people fighting a horrible disease. We shout about the celebrities, while these kids get just a whisper.

During one of the many sleepless nights in the hospital, I was roaming the halls at 3 in the morning. I stopped in the family lounge and saw an open Bible on the table. I sat down and read the passage that was marked. It was about Elijah looking for God. He had looked inside a powerful tornado tearing through the mountain, but God was not there. Then he saw a giant wall of fire, but God was not there. Then came an earthquake that tore the earth apart, but God was not there. Finally all the noise stopped, and a gentle breeze began to blow. In the breeze, Elijah heard a quiet whisper. And in the whisper, he found God.

I do not mean to belittle celebrities. I assume they're very nice people. But this I know for a fact. It has been my honor and privilege to get to know these courageous children with cancer. The media might consider their stories just a whisper. But in their whisper, I believe that I have found God.

Family

In 2007 we received a call from my parents. May of 2008 would be their 50th wedding anniversary, and they decided to give us a gift. They said the most important thing to them was family, and all they wanted was to be with us. They were treating the entire family to a 7 day Caribbean cruise. How cool is that?

Then, soon after that phone call, our lives changed when Tyler was diagnosed. The single focus of the entire family became healing Tyler. The trip was set aside, and we all went to war against this cancer. The support from our entire family was incredible.

Within hours of the diagnosis, my parents had me connected two important people. The first was the Standford doctor who developed the American version of the most aggressive treatment protocol for Burkitt's Lymphoma. The second was a doctor who became one of four incredible medical advocates we used as we received conflicting advice on treatments. Through them we quickly learned that options are almost never as black and white as they are often presented.

A few weeks after Tyler's diagnosis, I was asked to speak at some fund-raisers for Children's hospital. Afterwards the organizer commented that I always used Tyler's name when talking about things like strength and courage, but never used his name in a sentence with cancer. He said when focusing on cancer I switched to the plural, speaking of "our" scans, "our" options, "we" need, "our" prognosis, "we" received. I had never thought about it before. I was not even aware I was doing it, but I believe it is true. Cancer is truly a disease of the entire family. Tyler absolutely was on the front lines, but the entire family was in the war. This is true of ever family we have meet in the hospitals. All for one and one for all. Cancer is a disease of the entire family.


After we put together the treatment road map, I picked a date for remission and a new date for the celebration cruise. But the cancer turned out to be more advanced that originally thought, and we had several set backs. We missed the the dates. But Tyler continued to fight, and the prayers continued to come in. Finally we achieved remission. And then, although the docs don't like the word "cured", Tyler was officially considered cancer-free on the 12th of this month. On the 14th we joined my parents, my sister and friend, and my cousin and family, all on the long awaited cruise. We just got back. The best vacation ever!

My parents said the highlight of the trip was when a healthy and strong Tyler walked into their cabin, and escorted them arm-in-arm to a surprise vow renewal ceremony in the chapel. My highlight was my favorite activity in the world...SCUBA diving with my four sons. It is now almost impossible to recall the image of Tyler in the hospital. Now all I see is him diving in the Caribbean, zip-lining through the Belize jungles, chasing wild monkeys in Honduras, and karaoke singing on the ship. The best vacation ever.

I know there is still a war going on. I really wanted to attend the big CureSearch event in Washington DC this week, but it overlapped with the cruise. And a lot of our friends are still deep in the fight. Racheal Tippie is doing great at a new hospital, new doctor, and new treatment. Mason McLeod is fighting hard. Joe Friend is getting some good news for St. Judes, Matthew Barr has his golf outing coming up. Zac Mason's fight is facing very difficult challenges. Justin Hutchins is in a lot of pain. Brayden Bueter, Alex Pothast, Christina O'Bryan, Clayton Booth, Ty Ulmer, and so many others. Please continue to keep them in your thoughts and prayers.

But this war does have victories. It does have miracles. Tyler is one of many. Always fight to win. Always refuse to lose. And celebrate every single day. My parents celebrated 50 years together. I do not know how many of us will be here 50 years from today. I do not know how many days any of us have. But this I do know. I have looked into the eyes of children as they fought for more days. For reasons I do not know, days were taken from them but given to us. Let's make sure we earn the days we were so freely given. Take nothing for granted. Celebrate them. Enjoy them. Live a life worth living.

Team-in-Training

Believe it or not, I keep the running schedule on the boat. Even the 7 miler (28 laps on the ship deck). The training schedule required some hills, but I did skip that. Unless you are on the Titanic, hills are a little hard on a boat. I did try the treadmill with the elevation thing, but almost fell off with the boat swaying.

I still have a lot of weight to lose, but that goal was missed on the ship. The good news is that I did not gain any.

But now the docs say I can't run for a week. I have an infection in my leg from the trip. He thinks it's a bug bite. I thought it was the stingray that bit me. He latched on and wouldn't let go. The dive guide called it a Grand Cayman Hickey--no extra charge. I think it's the only thing I got on that island at no extra charge.

Who Wants to Celebrate!

Initial results of this weeks tests:

Signs of cancer: None
Blood counts: Normal
Kidney functions: Normal
Lung functions: Normal
Liver functions: Normal
Heart functions: Normal
Limitations of activities: None

Thank you all for your prayers and support.

Thank you Tyler for your courage and strength.

And thank you God, for being there at every step.

We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We are knocked down, but never destroyed.

--2 Corinthians 4:8,9

Miles Levin said that the path to Heaven will sometimes lead straight through Hell.

Tyler has walked his path, and walked it well. He is my hero.

This is reason to celebrate. This is a fireworks shooting, Drain-o bomb exploding, 3-man water balloon slingshot flying, paintball gun shooting celebration! Way to go Tyler! You are the man!

On one of those long sleepless chemo nights on J-5, Tyler and I were recalling our father/son trip to Pebble Beach. We were riding bikes, and had to climb a long steep hill. It was a back-breaker of a hill. But we finally made it to the top together. What an incredible view! It was beautiful, looking down at the town and Monterey Bay. Well, every uphill climb comes with a down hill race. We flew down that hill at incredible speed, straight down the middle of the street, all the way down to the Monterey Bay. It was an absolute thrill ride!

That night in the hospital, as he was hooked up to five IV pumps, we talked about this cancer hill being steeper that any he had ever experienced. But, I promised, we would get to the top together. And then we will be in for the thrill ride of our lives! So get ready, because now we are here!

And we should celebrate. This is a worthy of celebration. And as we celebrate, never forget that we are celebrating a single victory. It is a glorious victory, but one of many battles. Never forget our many friends that did not see this day. And never forget our friends that are still deep in their battles. We have won our battle, but never forget that the war still goes on.

Never forget.

But for now, we celebrate!

Free is Good

What did you do today that was great? What did you do today that could alter the life of another human being? Did you save a life today?

Through June 22nd, you can sign up for the bone marrow registry for free. Go here. It only takes four cotton swab swipes in your mouth. You could be the one. You could actually be responsible for saving the life of fellow human being. Now how cool is that?

Go here. Right now. That is of course, unless you are doing something else right now that is more important than saving a life.

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Tyler is doing great. We are back at Children's for more scans at 8AM, and then meetings with the doc. We have every expectation that all news will be good news...but it will be great to get the results.

We have learned the critical importance of sending all reports out for 2nd and 3rd opinions. It will be about a week to get all those back. But we will have preliminary results tomorrow. Then we are off to our family reunion to celebrate my parents 50th anniversary. Actually, I think it is something like the 51.5th anniversary. This was planned before Tyler was diagnosed, and has been held off until he is officially cancer free! Lots of family. Lots of fun. Lots of sun. Lots of ocean. Lots of SCUBA. And a whole lot to celebrate.

We must remember every single child in remission, so that we know there is a cure. This is beatable, You must fight, but you can win.

And remember everyone not in remission, so that we know the fight is not over. Cancer is ugly. It is evil. It must be stopped. Every time we walk out of Children's, I think of all those who are still there. Never forget them. They are fighting with a courage I can only imagine.

Please keep Joe Friend in your prayers. As Tyler was getting his first scans this week, Joe was reviewing the results of his own scans. Cancer does not play fair. Fight to win, Joe.

The One Year Mark!

In November of 2007 we walked into Children's hospital with Tyler. His pediatrician thought his stomach pains were due to an irritable bowel problem. The worst case scenario was appendicitis. Within hours we were praying for that "worst case" scenario. But that was not to be. Soon we were learning about Leukemia and Lymphoma. Over the next hours and days we were shown scans of cancer in Tyler's intestines, bladder, spleen, stomach, liver, kidneys, heart, and lungs. We then learned that leukemia had moved into 85% of his bone marrow, and his central nervous system was next. Tyler had advanced stage IV Burkitt's, and the cancer was now doubling every 16 hours.

We immediately went to war, contacting doctors, hospitals, research facilities, and pharmaceutical companies across the U.S., Canada, and Europe. We found doctors who were of incredible help, true life savers willing to push every limit in their passion for kids. And we meet others, so blinded by egos that they could never accept another diagnosis.

The support from our family and community was incredible. Friends came to he hospital to shave their heads in support of Tyler. They held hockey, dodge ball, basket ball, and softball tournaments. When Tyler came home, over 300 friends from high school stood in the back yard yelling "Fight to Win!"

I still have no idea how, but word spread everywhere. We have received emails of prayer support from every state and 67 countries. We then got calls, visits, and emails from Jack Hanna, Tony Dungy, Jason Taylor, Dwayne Wade, Brady Quinn, AJ Hawk, Wayne Gretzky, Archie Griffin, Chris Quinn, Dan Marino, Jim Tressel, and almost every player for the Blue Jackets, and The Ohio State football, hockey, and basketball teams.


In June of 2008, Tyler went into remission. At that time we were given a laundry list of long term side effects from the high dose chemo dumped into his body. But Tyler fought the side effects the same way he fought cancer. Doctors said he would not be able to return to school full time. But he did, getting his best grades ever. They said he would not be able to return to sports. But by winter he was playing DYA Basketball every weekend. Then, when the docs refused to sign the waivers to re-join the track team, he joined the high school volleyball team.

Always fight to win.

Through all of this, we knew the stats on relapse. The numbers are incredibly high for teenagers with advanced stage IV Burkitt's. Every month these numbers ran through my mind as we went back for scans and blood work. But Tyler has continued to improve, feeling and looking great.

While in the hospital, Tyler had told me that he was very lucky to have Burkitt's. He talked about the brave kids battling cancer years, and the dealing with relapses for another 3-5 years. But with Burkitt's, everything happens fast. Doctors describe it as cancer on speed. It grows fast, spreads fast, relapses fast, and dies fast. Tyler said he was fortunate to have a cancer that was beatable within a year. And, although relapses are much more common, the time period is much shorter. Relapses are extremely rare after a full year of uninterrupted remission.

This week we are back at Children's for scans. Initial reports will be back Friday, and then will be sent to other doctors for review. All clear results on these scans will officially mark one full year of uninterrupted remission. The war will have been won!

Always Fight to Win!

Relay For Life

This week-end is Dublin's Relay For Life. It is a great event, and Kathy has worked a lot with the group run by Stephanie Reed. Last year was the honorary ambassador for the event. He was there as they were setting up. But he was just coming off of chemo, and became ill and went home before it began. This year he will be absent again, but for a different reason. He will be on his way to the Caribbean to use his newly earned SCUBA certification card. What a difference a year can make!

Team in Training

Preparing for two marathons is a little harder than I thought it would be. Tyler still says I am too old, too fat, and too slow. But I did it last year, so I will do it again. Actually, I am getting faster. Last night was my best time ever on a 5 mile run. I think I'm going to get a new running shirt, and write on the back, "If you can read this, you have just been passed by a fat guy!"

Go here to support my run for cancer.

Friends

Please remember our friends in your prayers.

Joe Friend, an incredible young man with an amazing heart. He and his young wife were just told his fight will be a little longer and a little harder than ever expected. The news leaves Joe with only one choice... fight to win!
Mason McLeod continues to get strong. He attended a Braves game last night in Atlanta. I would love to see the expression on the faces of the doctors who said he woould never survive this long.
Rachael Tippie is doing great as she blows past the date that the doctors said she would never see. (in case you haven't noticed a trend, i have a low opinion of doctors who speak in absolutes)

Justin Hutchins continues to fight. His road has become very difficult.

Matthew Barr, Brayden Bueter, Alex Pothast, Christina O'Bryan, Clayton Booth, Ty Ulmer, and Zac Mason all fight with a level of courage and character I can only imagine.

The War of Words

I was listening to some politicians talking about the war on childhood cancer. Lots of committee meetings. Lots of commitments. Lots of talk.

I hear lots of words, but words do not win wars. Words are not results. The most common word used was "re-doubling efforts". What does that even mean? If your system isn't working, why would you double it? And when that failed, why would you "re"-double it?


The FDA promises to "re-double" efforts on drug approvals. But we are still waiting on drugs that have been available in Europe for a decade. Congress spent a year debating over the $30 million childhood cancer act, while approving $120 million in free condoms to Africa without debate. Now everyone is talking health care reform to cut costs. But we ignore that the current cost-cutting assembly lines of childhood cancer protocols are a major cause of the lack of progress.


So more committees, more meetings, more discussions, more reports. And after everything is said and done, a lot gets said and very little gets done.


I believe there is only one way to fight a war, and that is to fight to win. Doing something great requires fighting very hard, and doing the impossible requires even more fight. But it can be done. All it takes is everything we have to give. Actions, not words, will win the day.

Seth Harris had VOD, and would not survive without the drug difibutude. Doctors, administrators, and the FDA traded words for three weeks. Lots of words. No results. Then family and friends took over and got the drug to Seth's hospital within 24 hours. But then there were more discussions and debates. More words, while Seth was ignored. With the life saving drug within reach, the hospital decided to just give him more words. After a three year fight, and incredible efforts from his family and friends, Seth passed away.

So what do we need to do? Do anything. Click here to Sign a petition, run a race, shave your head, drink lemonade, or donate bone marrow.

And continue to pray and support these kids in every way you can.

• Mason McLeod continues to fight strong.
• Rachael Tippie is doing better, and getting stronger.
• Matthew Barr and Brayden Bueter were on T.V. last week, staying strong.
• Joe Friend, the great supporter and encourager, never loses his spirit.
• Justin Hutchins continues to fight very hard.
• Sinjin Andrukates and Tristan Saputo get stronger every day.
• Christina O'Bryan, Clayton Booth, Ty Ulmer, and Zac Mason refuse to lose.

Never forget that the war continues on.

Team in Training:

Running is going. I had no idea that it would be this hard to get back into the rhythm., but it is coming back (very slowly). This time I decided to run two marathons. Yesterday I added up the training miles plus the marathons. It came to 1,040 miles. I really, really wish I had not added up those miles.

I haven't been focusing on fund-raising (which is sort of the point of all this), but at least I am out running. If you can afford to sponsor me with a dollar or two for the Leukemia Society, you can go here. The donation is tax deductible, and goes to research blood cancers. But whatever you do...keep fighting for our kids.

Daniel Houser - A Chemo Man Hunt

I remember every detail of those first days in the hospital. Every meeting with doctors provided worse news. Each test brought worse news. The cancer was more aggressive and more advanced than initially thought. We were thrown into an unknown world, completely unprepared.

I immediately began contacting every doctor, hospital, pharmaceutical company, research lab, and patient I could find throughout the country and around the world. By our 3rd day I was in contact with Abraham Cherrix, a 16 year old in Virginia who was refusing chemo for his lymphoma. Doctors had petitioned the courts to force Abraham into chemo, but the appeals court allowed him to continue his natural treatments. Abraham sent me volumes of information on the "illegal" herbal treatment he was receiving in Mexico. That was almost two years ago, and he is now in complete remission.

Today we are all reading about the man hunt for 13 year old Daniel Hauser. He and his mother were fugitives on the run, as police hunt him down to force him into court ordered chemo. Daniel, with the full support of his parents, has also chosen to use natural treatments to fight his cancer. But the doctors disagree. So the FBI and Interpol were called to track down Daniel. The search went first into Canada, and then Mexico. Turns out they were in Minnesota the entire time.

I am amazed at the media coverage of Daniel Hauser, and would really like someone to help me understand what is happening. Daniels doctors said he needed chemo, and had the courts force him into compliance.

I really do not know Daniel, so I have no opinion of what is the right decision in his case. But I do have a concern about who is making the decisions. Consider his story as it relates to a couple of other stories, ones that never received media coverage.

Brett Workman had cancer, and he was begging for more chemo to continue his fight. But in Brett's case the doctors refused. They said his body could not handle more chemo, so they sent him home to die. But what was the risk? Everyone agreed Brett would soon die without treatment, so what was the risk of more chemo? There were more clinical trials available, but the hospital was not participating in them. Brett wanted to fight, but the doctors decided it was time for him to give up.

Sinjin Andrukates was also told there were no further treatments. He was told to go home and die. His mother went on the attack to save her son, in a battle against an incredible bureaucracy, With great efforts from many people, the hospital finally reversed their decision. They allowed Sinjin the right to fight. Sinjin is now in remission.

Mason McLeod has been written of more than once, but he continues to fight. He is a living miracle. At one point his insurance company decided to cut off payments for a treatment the family believed was necessary. The family fought through that, and won. His parents continue to look for options. They refuse to lose. And Mason continues to exceed all expectations, despite the opinions of others.

Rachel Tippie was also told her time was up. The doctors decided there were no options. Hospice was called in, and it was time to go home and die. But Rachel decided to fight, ignoring the doctors unanimous opinion that there were no remaining options. So Rachel's family went out and found more options, and doctors willing to pursue those options. Rachel is doing much better and awaiting her stem cell transplant.

So here is the question. How gets to make these decisions? Doctor and judges? Hospital administrators and insurance companies? Congress or the president? Who tells us when we should fight, how we should fight, and when it is time to lay down and die? Who has the right to make these decisions? What kind of society do we really want?

During our first days in the hospital, information was presented as though there was only one clear choice. But that is almost never true. There are many options and many decisions. I believe the problem is often that the doctors are just very confident in their opinion. I would certainly expect that of them. But their confidence can steal from us the right to make informed decisions, decisions that belong to us.

As we struggled to get clear answers during those first days in the hospital, we crossed paths with four incredible people. Personally, I credit these four people with saving Tyler's life. They gave us no medical advice. In fact, 3 of the 4 we knew only through emails and websites. But they demonstrated an incredible will to fight, with families willing to leave no stone unturned.

Each one of them, in very different ways, profoundly impacted on our decisions. I will be forever grateful. Last year I printed their names on my Team Tyler jersey, as I ran the Columbus Marathon to raise money for cancer research. Their names will be there again as I run this years marathon. Their names are Brett Workman, Christan Barker, Issac Lieser, and AJ Piniewski.

I would like to share the lessons they taught us with their lives.

1. Leave No Stone Unturned: There are no clear answers in cancer. There are multiple solutions to every problem. And you will find reputable doctors to support almost all of them. Keep asking questions, and keep searching. You do not need to try every option, but you should understand them. Make sure your decisions are truly informed.

There is not a single medical facility that holds all the answers. Everyone of them has their specific areas of strength. None are "right" or "wrong", but they are different. Get to know them, and be confident you are in the right place.

2. Doctors: There is a hierarchy among doctors, and oncology is high on the list. Your doctor therefore is among the top in his field. This brings an incredible level of confidence that allows them to make daily life and death decisions. This confidence in necessary, but it makes it nearly impossible for them to objectively present opposing opinions. To make an informed decision, you must meet doctors at facilities with a very different approach.

Do not allow your doctor to refer you to someone else. They will naturally refer people they respect, and that person is likely someone with a similar approach. That is not a second opinion, it is only a confirmation of the first opinion. A second opinion is not about doubting your doctor. You are obviously confident in your doctor, or you would not be there. You are not checking for mistakes. You are looking for a different approach, a different perspective toward treatment. As King Solomon said in the Bible, there is wisdom in seeking the council of many experts.

3. Statistics: As Mark Twain said, there are three levels of lies. There are plain lies, damn lies, and statistics. When making decisions, make sure you understand where the statistics are coming from. Too often statistics are quoted without an explanation of the data. As an example, stage IV Burkitt's is quoted as a 60% survival rate with the french protocol. But that percentage is an average of all stage III and IV "B" cell lymphoma's. To get more accurate number, I used the Internet to track down specific cases. I found 48 people matching Tyler's profile. They were all teenagers (47 boys, 1 girl), advanced stage IV, over 50% bone marrow involvement, and received the french protocol. Of the 48 I found, not a single one survived. Do not make decisions on numbers without having the data.

Remember also that there are limits to statistics, involving many variables. Every child is different. Every situation is different. As parents, we wish we only heard two statistics. 0% relapse and 100% remission. Unfortunately those numbers just do not exist in cancer. Whether things are going good or bad, they can always change. As Lance Armstrong says, the odds do not matter. 1% or 99%, you still have the same two options. Fight like Hell or lay down and die.

4. Plan B: Cancer moves fast. You do not want to be researching for new options when there is little time left. Right now be researching plan B. Know your plan of action if this treatments does not work. Know the markers that define success, and what would cause you to change course. Have a plan "C" and plan a "D". Plan for every contingency. You do not want to start your research after options have run out. It could be too late.

At each step, I knew what we would do with Tyler if the treatment did not work. Even when things finally started working, I always had the contingency plans. Today, Tyler is strong and doing great. We will soon be passing the very crucial "one year in remission" mark. We celebrate and thank God every day for the miracle. But through this year, I also knew the hospital, doctor and treatment we would immediately jump on had things gone a different direction. As they say, expect the best, but prepare for the worst.

So those were the lessons we learned from four amazing young men and their families. You must always take charge. You must make fully informed decisions. It's not easy to do when you first hear the words "your child has cancer". But nothing about cancer is easy. You cannot even think straight, and every fiber of our body wants someone to step in and tell you what to do. Kathy's first words to the doctors were, "Please just tell me he's going to be okay!" You are on information overload, and just want absolute answers. In an attempt to help, doctors often simplify options with generalized explanations. They tell you the "best" treatment, because that's what you desperately want to hear. Their intentions are good. But you must retain control. The doctors are there for expert advice, but the decisions are yours to keep. You know your child better than anyone.

Always fight. And always fight to win.

Team in Training:

I am a little late getting started on fund-raising. I will be running both the Columbus and Tampa marathons to raise money for cancer research. If you would like to sponsor me, you can go here. I keep a mini training log there if you would like to keep undated.

The training to get to the Columbus Marathon is 543 miles. I'm 35 miles into it (Wow. Only 35 miles in 21 days. How do I get back to 26.2 in one day?).

All the money is tax deductible, and goes to the Leukemia-Lymphoma Society research fund.

Do You Understand?

I really need some help understanding a few things. I guess I'm just not intelligent enough the figure them out on my own. Maybe the problem is that I am not a doctor. I'm only a father who came very close to losing a son he loves very much, one who has watched the suffering of too many children fighting cancer. I would really appreciate it if someone could give me some answers in terms that I can understand.

Seth Harris needs the drug Defibrotide. His doctors spent weeks unsuccessfully trying to find the drug, as Seth's condition deteriorated. Finally Seth's parents ask other parents to help. They found the drug by calling the manufacturer. What was so hard about that? Do his doctors not know the manufacturer of the drugs.

Rachel Tippie was told by her doctors that all options were gone. They did a world wide search, and could find no clinical trials. But when her mother called the American Cancer Society, they told her of 12 current trials, and which hospitals were participating. Rachel is now at one of those hospitals, improving quickly. So what was so hard about that? Have her doctors ever heard of the American Cancer Society? Where did the doctors search?

Doctors told Sinjin Andrukates that his last option had been used, and he needed to accept that his time on earth would soon be over. But Sinjin's mom called around, and found another option. The doctors said it would not work, but Sinjin said they were wrong. That was a year ago, and Sinjin is now in remission. What was so hard? Why could the family find treatments when the doctors could not?

Tyler needed the drug Rituxinab. It has been called a miracle drug for Burkitt's. But our doctors said it was unavailable. There were no open clinical trials for stage IV Burkitt's. But when I called CureSearch, they gave me 9 open trials. I then called five other hospitals, and they all were participating in the trials. Why was that so hard? I assume our doctor knows about CureSearch, since he is listed as a member on their board. Did he just lose their phone number?

Mason McLeod was blocked from treatments by his insurance company. The doctors did everything in their power, but could not change the decision of the insurance company. However calls from the family, friends, and supported got the decision reversed in one day. Why was that so hard? What could friends explain that doctors could not?

There many more stories. Why do some doctors seem to close doors, while other are willing to find open doors. Why do some just trust the system, while others search wider for better options. Why are some so willing to give up, while others fight to the end.

Why is it that sometimes "no available trials" really means "None we are participating in". "The drug is unavailable" really means "We will not pay for it". "No remaining options" really means "None available at this hospital". "This is the standard protocol at all hospitals" really means "All hospitals that agree with us." "That will not work" really means "We are unwilling to try".

Why?

Maybe it's more complicated than it sounds. Maybe I'm just not smart enough to understand.