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.
Monday, November 16, 2009
Sunday, November 15, 2009
Michelle Obama and Joe Sastak
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.
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.
Sunday, November 8, 2009
Tyler Genneken
Some of the greatest lessons of my life have been taught to me by teenagers, especially my own sons. Teenagers have a very unique perspective of the world. They have this amazing blend of adult comprehension and childlike enthusiasm. One of our family traditions is that, for their 1st teenage birthday, the boys select any location for a week long father-son adventure. The purpose is to create adventures that cause them to start making their own decisions and choices. It marks the first steps in preparing them for all the challenges of adulthood. During each adventure I have been amazed as I watch them think through their decisions (Brandon's decision during the shark dive was to just stay on the boat).
Two years ago, when Tyler was struck with the diagnosis of cancer, he faced a monster that exceeded any challenge that I could have prepared him for. I am in awe of how he handled all that he went through.
Because of Tyler's age, I tended to get much closer with the other teenagers fighting cancer. As with the rest of life, these young adults have a very unique perspective of cancer. Unlike their younger counter parts, they have a full understanding of the battle they are facing. They understand life and death. They understand the reality of relapses. They understand the potentially life long effects on their body. But unlike their older counter parts, they have not yet experienced life. They have dreams, but have not yet lived them. They comprehend falling in love, going to college, having children and grand-children, having a career. But they have tasted none it. Just as they are about to spread their wings to fly, cancer strips them of everything. It is in this moment of tragedy that I have witnessed the most incredible passion for life and compassion for others. These "kids" are absolutely amazing.
Through everything that Tyler experienced, he never complained. Actually, he always referred to himself as being very lucky. Although Burkitt's is very aggressive, the battle is usually over in a year. He was much more concerned with the younger kids, many of whom were facing 4-6 year battles. He talked to them often, encouraging them and making them gifts.
While in the hospital, I also watched 19 year old Ryan Salmons spent time with the younger kids. He even spent time with the parents of younger kids, helping them understand what their children were feeling. He continued this even after he knew his own battle would soon be lost.
When doctors gave up on 17 year old Brett Workman, he was sent home with hospice. It was too difficult for many of the nurses to watch, so they found other things to do as the transport team wheeled him out. As Brett looked down the empty hallway, I heard his whisper in his very weak voice, "Please tell the nurses thank you very much. I know they did everything to try to save me. Please tell them thank you very much."
A.J. Piniewski was 14 when he finally understood his battle would be lost. He picked up the phone and contacted the Make-A-Wish Foundation. He cancelled the wish they have granted, and changed it to matching necklaces for his mother and sister. A lasting memory to comfort his family. The necklaces arrived the day after his funeral.
Jake Silberg battled cancer at 15. Facing death, he came up with a motto for living. He wrote it on the ceiling above his bed, so he would see it at the beginning and end of every day. "Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!"
18 year old Miles Levin spent two years encouraging the thousands that followed his web site. He often said he had no regrets. Shorty before his death, he wrote "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."
14 year old Tyler Genneken was told in August that his cancer was unstoppable, and he had only weeks to live. But what the doctors did not understand was that Tyler had not finished living. He still had two wishes. First, he wanted a bone marrow drive. He knew his own time was running out, but he still pushed for the drive. He wanted his own battle result in saving the lives of others. It took a lot of planning and work, but last month Tyler stood in attendance to see his bone marrow drive register an all time record of new donors.
Tyler's second wish was to see his older brother get married. And that dream also came true. The day following the successful bone marrow drive, Tyler stood in front of the church...as the best man in his brothers wedding.
This past week, after a three year battle, Tyler passed away. His father posted the following:
"As he lay there, still in his bed, the battle over, Tyler smiled so slightly, that little dimpled grin he displayed when learned of something that made him happy or saw someone he loved. At 7:20pm on November 4th 2009 Tyler died, and at 7:21pm Tyler’s grin returned, his face relaxed in contentment, as he learned of his reward and was greeted in heaven by someone he truly loved."
Two years ago, when Tyler was struck with the diagnosis of cancer, he faced a monster that exceeded any challenge that I could have prepared him for. I am in awe of how he handled all that he went through.
Because of Tyler's age, I tended to get much closer with the other teenagers fighting cancer. As with the rest of life, these young adults have a very unique perspective of cancer. Unlike their younger counter parts, they have a full understanding of the battle they are facing. They understand life and death. They understand the reality of relapses. They understand the potentially life long effects on their body. But unlike their older counter parts, they have not yet experienced life. They have dreams, but have not yet lived them. They comprehend falling in love, going to college, having children and grand-children, having a career. But they have tasted none it. Just as they are about to spread their wings to fly, cancer strips them of everything. It is in this moment of tragedy that I have witnessed the most incredible passion for life and compassion for others. These "kids" are absolutely amazing.
Through everything that Tyler experienced, he never complained. Actually, he always referred to himself as being very lucky. Although Burkitt's is very aggressive, the battle is usually over in a year. He was much more concerned with the younger kids, many of whom were facing 4-6 year battles. He talked to them often, encouraging them and making them gifts.
While in the hospital, I also watched 19 year old Ryan Salmons spent time with the younger kids. He even spent time with the parents of younger kids, helping them understand what their children were feeling. He continued this even after he knew his own battle would soon be lost.
When doctors gave up on 17 year old Brett Workman, he was sent home with hospice. It was too difficult for many of the nurses to watch, so they found other things to do as the transport team wheeled him out. As Brett looked down the empty hallway, I heard his whisper in his very weak voice, "Please tell the nurses thank you very much. I know they did everything to try to save me. Please tell them thank you very much."
A.J. Piniewski was 14 when he finally understood his battle would be lost. He picked up the phone and contacted the Make-A-Wish Foundation. He cancelled the wish they have granted, and changed it to matching necklaces for his mother and sister. A lasting memory to comfort his family. The necklaces arrived the day after his funeral.
Jake Silberg battled cancer at 15. Facing death, he came up with a motto for living. He wrote it on the ceiling above his bed, so he would see it at the beginning and end of every day. "Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!"
18 year old Miles Levin spent two years encouraging the thousands that followed his web site. He often said he had no regrets. Shorty before his death, he wrote "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."
14 year old Tyler Genneken was told in August that his cancer was unstoppable, and he had only weeks to live. But what the doctors did not understand was that Tyler had not finished living. He still had two wishes. First, he wanted a bone marrow drive. He knew his own time was running out, but he still pushed for the drive. He wanted his own battle result in saving the lives of others. It took a lot of planning and work, but last month Tyler stood in attendance to see his bone marrow drive register an all time record of new donors.
Tyler's second wish was to see his older brother get married. And that dream also came true. The day following the successful bone marrow drive, Tyler stood in front of the church...as the best man in his brothers wedding.
This past week, after a three year battle, Tyler passed away. His father posted the following:
"As he lay there, still in his bed, the battle over, Tyler smiled so slightly, that little dimpled grin he displayed when learned of something that made him happy or saw someone he loved. At 7:20pm on November 4th 2009 Tyler died, and at 7:21pm Tyler’s grin returned, his face relaxed in contentment, as he learned of his reward and was greeted in heaven by someone he truly loved."
Friday, November 6, 2009
Christmas and Noah Biorkman
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.
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 Biorkman1141 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.
Tuesday, October 27, 2009
Prayer
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.
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.
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
People say nothing is impossible, but I do nothing every day. -- Winnie the Pooh
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
Saturday, October 24, 2009
Sam Owen & Mason McLeod
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.
"
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.
"
Sam Owen passed on Wednesday, just a couple days after his 13th birthday and Bar Mitzvah.
Wednesday, October 21, 2009
Mason McLeod
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.
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.
Thursday, October 15, 2009
Solving the Math Problem
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.
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.
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
Tuesday, October 13, 2009
Healthcare Reform
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.
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.
Friday, October 9, 2009
Pink verses Gold
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.
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:
Bob Piniewski
Founder
People Against Childhood Cancer
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
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