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Increased Funding for Childhood Cancer

Community: Citizen's Briefing Book

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Increased Funding for Childhood Cancer

Dear President Obama:

Childhood cancer is the number one killer disease of our children today: More than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Our children, your children, have a 1 in 300 chance of being diagnosed with cancer before age 20. Each school day, 46 more children are diagnosed. Survival rates, while improving, have leveled at around 75%; and each day 7 children die from cancer. In addition, each day, nearly 40,000 children are in treatment.

Treatments for childhood cancer have not changed for 20 years, with "down-sized" adult treatments being the primary means. These treatments leave 60% of the SURVIVORS with long-term health issues ranging from infertility to developmental problems to major organ damage to higher risk for secondary cancers.

Yet funding for our children's number one killer is woefully inadequate. Our generation has mobilized against breast, color and prostate cancer, yet we have grossly failed our children in funding improvements in their care. Funding for research into prostate cancer is over $2000 for each year of potential life lost. Similarly, colon cancer and breast cancer receive approximately $350 and $150 respectively for each year of potential life lost. Childhood cancer receives about $23 for each year of potential life lost. We are ashamed.

I did not know this until Father’s Day 2007 when my 14 year old son AJ was diagnosed with cancer. He was a happy, healthy, athletic young man that was a joy to be around. He supported you. Unfortunately, in December 2008, I was forced to answer a question I hope no other Dad ever hears: “Dad, what is hospice?” AJ left us on January 5, 2008.

But as promised, we fight back. I, along with an incredible young woman who has survived childhood cancer, have founded People Against Childhood Cancer, or PAC2 (www.curechildhoodcancer.ning.com). In four months we are over 3,000 strong and will never stop on behalf of the children we love. We seek ways to increase funding for this horrible elephant in the room that America refuses to acknowledge.

The NCI and the American Cancer Society direct less than 3% of all funding to childhood cancer. Last year, a huge victory for the childhood cancer community was the Carolyn Price Conquer Childhood Cancer Act, allocating $25 million for the next five years for childhood cancer research. In today’s world of billions and trillions, much of it going to those that barely deserve it, I again have to be ashamed.

We are not protecting the youngest and most innocent of our society to the best of our abilities. You have the power to directly fund more research in your budget. Please consider including a major line item in your budget to fund research to save our children. We are sure Malia Ann and Natasha would approve.

Sincerely,

Bob Piniewski and Lori Keith
Founders – People Against Childhood Cancer

207 Comments » Posted by AJs Dad to Health Care on 1/12/2009 4:02 PM

Comments

	cancermom 1/12/2009 4:29 PM	My son, Thomas, now age 12, was diagnosed with leukemia at the age of 3. He endured over 3 years of chemotherapy and was declared "cured" in August 2007 after being off-treatment for 5 years. Two months later, he relapsed and is now battling for his life a second time. During the past year of his treatment, some friends of ours, whose son was 1 month away from being off-treament, relapsed and died 4 months later. I have to live every day knowing that of the 20% of children with leukemia who relapse, only 30% will survive. I can only hope and pray that in the next 4 years, there will be new drugs and treatments available for my son, who has a 30% chance of living to see the age of 17. If he does survive, he will be dealing with the long-term physical, neurological, and emotional issues from this disease, and its rigorous treatment ,the rest of his life. After learning about the lack of funding for our kids, and after learning that the drug companies really have no financial incentive to develop new drugs for these kids since childhood cancer is considered "rare," I no longer will just stand by watching our kids suffer and die. I am asking you to give these children and families the "hope" you speak about so much to us. Please provide more funding for childhood cancer research in your budget. Thomas is a huge supporter of yours - he watched every debate from the hospital with chemo or a blood transfusion dripping into his veins. He celebrated with me the night you won the election, and he told me he wants to survive so that he "can grow up, have a family, and make the world a better place." Please help him be able to do just that. Sincerely, Lisa Molina Austin, TX Memeber of People Against Childhood Cancer
	Tomi 1/12/2009 4:30 PM	Please commission an indepth study on childhood cancer, the facts are staggering and no one is listening. A good starting point is a search of Carepages.com and listen to the experts..........the parents. The challenges are well documented as well as the frustrations and the results. Respectively submitted. TJ Jones
	Larry P 1/12/2009 4:33 PM	Those of us who have lost a child to pediatric cancer lead lives defined by a great sadness that our child did not have a real chance at life and by a deep commitment that we will do all that we can do to stop pediatric cancer dead in its tracks. We hope that President Obama, Vice-President Biden and Secretary Daschle join with us by putting greatly increased funding for cancer research and treatment and for multi-faceted support for kids and their families fighting their way to a cure, at the top of their priorities for the Department of Health and Human Services. All we are saying is Give Kids a Chance. Sincerely, Larry Perfetti
	DaveN_NY 1/12/2009 4:35 PM	Some things are so heinous, they demand that we wipe them out without regard to the cost. I believe that childhood cancer is so inherently evil, we are obligated as human beings to do everything in our power to eliminate it. The world looks to us for leadership in medical research, and I can not think of an area where such research is more important, necessary, or valuable than in curing childhood cancer. It's understandable that a drug company, with shareholders to answer to, would put their research dollars into areas that would generate the most profit. The role of government is to answer needs that cannot be met by individuals or businesses. Childhood cancer research cries out for government action, and I hope our new government will step in to meet this urgent need.
	TwinsX2 1/12/2009 4:54 PM	It is sad when anyone passes away, but when it is a child, it is unbearable... In the end, the enemy takes over a small body - it's not fair. The kids are typically not in the spotlight b/c they have not had the time to reach enough influential people with money and thus research funding is lacking. Please help us fund this important research.
	buslady 1/12/2009 5:12 PM	Dear Sir This week we as a country lost several children that were potentual leader in our great country. Cancer took their lives. In this day and age this disease shouldn't be as powerful as it is. We have the intelligence in our country we just don't have the funding to do the research. Please find our children the funding for childhood cancer. Our future depends on it. As AJ's Dad said "Our children, your children, have a 1 in 300 chance of being diagnosed with cancer before age 20. Each school day, 46 more children are diagnosed. Survival rates, while improving, have leveled at around 75%; and each day 7 children die from cancer. In addition, each day, nearly 40,000 children are in treatment." Isn't it time we as a country find a way to change these figures? We need research, funding and the help of a caring government.
	jenanelson 1/12/2009 5:16 PM	I am privileged to have an incredibly brave and amazingly sweet son whom God has entrusted to me to help him through this long and scary battle with leukemia. My 4 year old son, Ty, is a true hero. He and all the other children who are fighting cancer for their life every day. Ty’s battle is one that is all too common. Just today 46 children were diagnosed with cancer. 1 in 4 elementary schools has a child with cancer among its students. That’s too many. 2300 children will die this year as a result of cancer. An extraordinary 15 year old named Chase Meacham discovered that the US congress was planning on cutting childhood cancer research funding and took it upon himself to address them. He had won his battle with bone cancer after a leg amputation and 9 months of grueling treatments. He has spoken the truth as only one who has lived this battle can and much better than I ever could. These are some of his words and they are sadly wise beyond his years. Chase stated “I had won my battle but cancer had by no means lost. Cancer was stronger than ever. The children behind me knowing it more than anyone else. Some of the strongest soldiers this country has ever seen aren’t even old enough to drive yet. It should not be this way. We need to find a cure. We need to find a cure for every child who’s ever screamed in pain or wept in sorrow because of this disease. We need to find a cure for the parents of these children, who have no choice but to helplessly watch as their son or daughter fights a battle they would gladly fight in their place. We need to find a cure for the siblings of these kids, who don’t understand why their brother or sister is acting so different; why there is tension in their family, or why their parents are crying. We need to find a cure for the friends and the family, who don’t know what to say or how to act; what to do or how to help. We need to find a cure for those lonely children, sitting in bed today – a bed that is not theirs. We need to find a cure for those children, because they may not be around tomorrow. Cancer is their fight but it is our responsibility. I am here today to thank you for your help and support. Together, we will find a cure.” Please don't let these little soldiers and their families down.
	Grace 1/12/2009 5:17 PM	Please allow me to be the voice for my grandchildren. They are only two and five years old. They can't fight for more research to find a cure for cancer. What they do is fold their small hands in prayer and pray for those who I tell them are ill. I am a Prayer Warrior for Care Pages and Caring Bridge. I never knew of this insidious monster "childhood cancer" until a friend's daughter was diagnosed with (ALL) leukemia. After two years she has completed her roadmap. She is now sixteen. PLEASE help get the research funding so that this sweet girl will not have to worry about a relapse. It would be an answer to many prayers if also my two precious grandchildren never had to worry about this monster "cancer" entering their little bodies and not being able to have a cure in place. As it is now I have in the last two years seen way to many young children earn their angel wings, God Bless your administraion as you work to bring HOPE to our Nation.
	Don Ayers 1/12/2009 5:17 PM	I just attended a funeral for Coleman Larson, a five year old boy taken by medulloblastoma. It was heartbreaking. No parent should have to bury their child because of cancer. Please increase funding for childhood cancer research.
	D Evans 1/12/2009 5:18 PM	As a proud mother to a brave four year old warrior, I ask you to to prioritize Childhood Cancer Research and funding. We cannot as a nation accept the fact that childhood cancer is the number one killer of our children, surpassing asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Forty-six children will be diagnosed today. One in three hundred children will be diagnosed with cancer before they are twenty, it could be anyone's child, and America….It Is Your Child. We will never stop fighting for our children. Maddie's mom
	Larisa H 1/12/2009 5:30 PM	On December 1, 2008 our lives were changed forever when our 7 year old daughter Lily was diagnosed with Leukemia. She is currently receiving treatment and has gone from a child who on Thanksgiving day was turning cartwheels on the front lawn of her grandmothers lawn to not being able to climb two steps without help. She has lost most of her hair and this is only the beginning of her battle. I like many americans were unaware of how underfunded childhood cancer was until that day, never did I imagine as a nation that we would spend so little resource on our children - our future. Instead I have found while lots of money is spent on breast and colon cancer. Researching cures to childhood cancers gets only 3% of the national funding. Since Dec 1st when my daughter was diagnosed - just 43 days - we have lost three friends at our hospital who are battling. And just last night Addison Lee age 5 lost her battle after 2 hard years, not from the cancer itself but because of the harsh treatments that are given. It is ashame that there have been have been very few new drugs for cancer in the last 20 years. In fact most of the drugs used to treat my daughters cancer were developed in the 60's. I know I wouldn't use any of the electronics from the 60's, there weren't even PC's then, yet this is the technology we are treating our children's cancers with. I truely believe in this country we have the intelligent people we need to find a cure to this horrible disease it just needs to be appropriately funded. No child should have to grow up the way the children of cancer do. Children should have innocence. I have protected my children from watching anything but Disney for most of their lives believing there was plenty of time to grow up. Never did I imagine the bathtub conversations of my 5 and 7 year olds would be about whether or not Lily was going to die. Please let's work together to find a cure and let these children grow up to be the GREAT AMERICANS they were destined to become.
	ACMommy 1/12/2009 5:32 PM	They are our future, they have no voice but us, they are dying. Consult your experts and you'll see. Please don't ignore them anymore- it's unconscionable.
	thegloberover 1/12/2009 5:32 PM	As I type, children around the world are being diagnosed and dying of cancer. It is wrong. They are our future and deserve a chance at life. And we can do something about it. But awareness must be raised and funding must be increased. You can help and be a leader in this journey, President Obama. I have watched as too many children have earned their angel wings way too early. Theirs is not a choice - it is only a battle that they fight so bravely because they have to. The voice of the parents and supporters is strong. And we will continue to speak until people are listening. Please help us protect our children! I encourage you to read some of the journeys on CarePages or Caring Bridge. The stories are heartbreaking as the parents of childhood cancer patients open their lives for the rest of the world to share. Lara Bancroft Care Page and Caring Bridge Prayer Warrior Chemo Angel Member People Against Childhood Cancer CureSearch supporter and volunteer
	suerob 1/12/2009 5:33 PM	Dear President Elect Obama Our family has been touched by childhood cancer and we lost the most precious little girl you'd ever want to meet. She wasn't a year old when she was diagnosed with ATRT a very aggressive brain tumor that only 5% survive. At age seventeen months after fighting so hard and suffering so much she passed away in her mother's arms. Go to Carepages.com and read about baby Hazel and her parent's heartbreak at losing her. I pray everyday for so many children who have been stricken by the monster cancer and I pray for so many parents whose children have lost their fight against the beast. NO parent should have to live in fear that tomorrow their child could lose their battle.
	Caleb's Dad 1/12/2009 5:34 PM	Dear President Obama, My son, Caleb Whan, lost his life to a horrible monster named Leukemia. Caleb fought a valiant battle for over 7 months; just to have this disease take his future and leave us with only 4 short years of his life. Caleb passed on to heaven on March 28th 2008. I have been thinking a lot lately of how to persuade people to get aboard and make a change for the good in this sick world of Childhood Cancer. The most difficult challenge I face, is to get people to understand the travesty of what is happening, as I do. I know that you will not be able to understand; through spoken or written words…one must experience the loss of a child to know how it affects the world. My life as a father, who lost his son, is much different now. When I wake in the morning, before I open my eyes, I pray that the nightmare is over. After diagnosis, Caleb slept with me and my wife because he needed the comforting for the pain and suffering he was going through. Still today, before I open my eyes, I slide my hands to the middle of the bed to touch his leg and see if he lying next to me…Caleb is not there. This is the start to my day…My nightmare. As I get ready in the morning, I see his picture, and I mourn. Most of the time, I am consumed with grief. I speak to him as if he were there. I tell him, I am sorry that he had to suffer so much…and that mommy, daddy and the doctors did everything they knew to do, but it all failed. I then tell him, “I love you,”…there is no response. When I get out to our living room I look at our couch and see the very place where Caleb was lying when he took his last breath. It hurts to think that, I will not be able hold him, see his smile, play Spiderman with him, hear his precious voice, or give him a hug and a kiss until I am with him again in Heaven. All through the day, I see things different. When I see a bird…When I see a butterfly… When I see the stars…When I see a child swinging…When I see the Clouds…I remember Caleb. When I see Caleb’s toys…I remember a time when he was playing with that toy. Those memories can be (of good times) of us together, as a whole family, or (bad times) a broken family without Caleb. Some memories are of Caleb in treatment suffering in pain and misery. One of the most difficult things I see ahead of us is explaining to his little sister, Isabella, one year-old, why she does not have a Big Brother to look after her…Do you think she will understand? Or do you think Isabella is going to question God at this early age? Statistically speaking, you may look and see a very high success rate for Leukemia. But, there are many sub-types included in the statistical data in which you are given. Often the sub-types are literally a death sentence to these children. Caleb had Hypodiploid Acute Lymphoblast Leukemia, which has 8 to 10 diagnosis, each year, in the United States. The success rate of Hypodiploid ALL is about 15%. This is unacceptable by any standards. We, as a country, have turned our backs on these children because there is still no cure and no current funding for these rare cancers. The funding for Childhood Cancer Research needs to be enough to trickle down to these rare types of cancers. As you know, ONE CHILD LOSING THEIR LIFE IS WAY TOO MANY. If you saw this as a father who lost his son, the funding would be unlimited until all Childhood Cancer is Cured. I ask you to put yourself in my skin for one day and the answer to the question of funding Childhood Cancer Research will be abundantly clear. “Those who have the ability to take action, also, have the responsibility to take action!!!” Thank You, Robert Whan, Caleb’s Dad
	kelsie's aunt 1/12/2009 5:36 PM	We just passed the anniversary of my 14 yr old niece's DEATH. Death at 14 yrears old. She NEVER got the opportunity to go to high school, college, get married and have children. Instead she suffered for 5 months after being diagnosed with Burkitts Lymphoma. Suffered in ways NO CHILD should ever suffer. If it were your child you would take action....please help our children. Our youngest victims should be cured first. Kelsie's aunt Kathi member of PAC2 (People Against Childhood Cancer) www.curechildhoodcancer.ning.com
	Char 1/12/2009 5:39 PM	Dear President Obama, I'm so proud to have you as our leader. I am thrilled to be asked what the priorities should be in this country. There are many -- the economy, more jobs, a cleaner environment, decreasing conflict in the world. I hope you will also take action on the urgent need for funding research and treatment for childhood cancer. My son, now 16, was diagnosed with a rare form of lymphoma, 18 months ago. He endured a grueling protocol of chemotherapy than nearly killed him to cure him. Luckily, he is now cancer free, but every three months he goes through scans to be sure the cancer does not return. He chances of surviving a relapse are not as good as the first round.... As stated, the drugs used on children are massive doses of old drugs that have worked for adults. Developing drugs for childhood cancer will never be a priority of drug companies because it is not good "business"...these cancers are too rare. The drug treatments will never bring a return on the "investment." But these children's lives are priceless. One child....46 a day...2300 a year is too many. Far too many. Please make it a priority to invest in the lives of these young people. If the drug companies can invent viagra, they can invent a drug to help leukemia, lymphoma, all the sarcomas...and the many, many childhood cancers. Please make this a priority. Sincerely, Char Silberg
	kbuckley 1/12/2009 5:44 PM	My son, Jedediah, has been battling cancer for 7 years...he is 11. He has lost his childhood. Children are our future....that is an essential part of your platform. Put your money where your mouth is and increase funding for childhood cancer. Please. Please help us save our children. I am too tired and too busy to beg more. Kristin Jed's mom
	MamaLK 1/12/2009 5:46 PM	Please make funding childhood cancer research a priority among the billions of dollars granted for medical research. With hope, Lori Koran
	AmyG 1/12/2009 5:46 PM	My 13 yr old daughter, Delaney, was diagnosed with Alveolar Rhabdomyosarcoma on 6/10/2008 and is fighting a tough battle that we pray she will win. Please support our children and make this a priority.
	Grace 1/12/2009 5:46 PM	"Today we begin in earnest the work of making sure that the world we leave our children is just a little bit better than the one we inhabit today" (President Obama's Quote) This quote says exactly what all adults wish for their children who are battling Childhood Cancer. PLEASE read the facts about childhood cancer. The world we inhabit today does not provide hope medically for many of the children from birth to teen years if they are diagnosed with cancer. The term "rare" means nothing when it is your son or daughter or grandson or granddaughter when told they have cancer. I encourage everyone to lift prayers daily for this new administration! Please turn the tide for all the families who are battling cancer so that there will be more funding for research in hopes of finding a "CURE." Peace, Grace and Hope....Diane E.
	Miranda Appleton 1/12/2009 5:51 PM	I am a mother of a 5 year old brain cancer survivor. He (Blakey) was diagnosed on January 1, 2008, a little over a month before his 5th birthday. Blakey has been through 7 surgeries, 11 rounds of chemo, 3 stem cell transplants and countless blood and platelet transfusions. Blakey spent the whole month of January in the hospital (Anrold Palmer) and was in and out of the hospital for 2 months before having to go to another hospital (Shands) for more chemo and his stem cell transplants. Blakey's doctors have not given an exact diagnosis of his tumor because his tumor has characteries of three different tumors/cancers. Blakey has a 60% chance that his cancer can come back and he only has a 10% chance of surviving his cancer. I would love for his doctors to find a cure for cancer. In order for researchers to continue their search for a cure, they need funding. Please help....What would you want if it is was your child? Think about how it would change your life. Imagine how you would feel to have to make life threatening decisions about your child's life. You do not tough until you meet these children who have/are going through chemo or radiation. Or when you meet these children's parents who have to make these decisions. Blakey's Mom Miranda
	Childhood cancer mom 1/12/2009 5:52 PM	As I read through all the comments before mine it broke my heart because I know their pain. I know these children, many of them personally, and their parents. I live in their world. I am one of them. My daughter at three years old was diagnosed with a "rare" cancer. I am asking for more funding for childhood cancer on her behalf as a cancer survivor. And on the behalf of the following list of children and their families. These are the children that my circle of cancer friends has lost, most in 2008. Do this in memory of them: JULIAN, COLEMAN, JOHN ERIC, TRINITY, DANTE , ASHLYNE, GABE, MATTHEW ,AJ, ANGEL, ROMAN, JORDYN, OWEN, ANDREW L , ANDREW H ,CADEN, CHARLIE, CODY M, CODY LEE, COLE M,CRISTINA, DINAH, DONNIE, DOUG, ELESHA , GREG, HAYDEN, HAZEL, JABIN, JACOB, JESSICA, JOEL, JOSEPH, DRAKE, HALEIGH, DIEGO, ZACHY, TIMARREE, BROOKLYN, BROOKE, JADE, CHASE, ERICA ,RJ, MARIANNA, GUNNER, ANTHONY, MICAH, JAY JAY, MARY, EMILY, JEMMA, NINA, MADDIE, WALKER, PAXTEN, CALEB, MICHAEL, ZACHARY, JEREMY, MATTHEW, NICHOLAS, ISAAC, BRODY, KODY, DEVIN, TYLER, FAITH ,ELLA HOPE, NOAH, LILLIE, GRACE, COOPER, LUCAS, KATIE, CONNOR, CHLOE, ELIZABETH, PEYTON, JELLY BEAN JEAN, AJLA, KAYLA C, KAYLA W, KYRA, MALACHI, MICHAEL G., MILES, SARAH, SHAELYNN, SILIO, VICTORIA, ZACH T, COLE AND ARDEN
	JimP 1/12/2009 5:55 PM	Hello President Obama, For me this is a very important issue, being the father of a 5 yr old son who was dxed with Medulloblastoma, a cancerous brain tumor. Most peopel including myself, have no idea that the occurance of childhood cancer is on the rise each and every year, that there is very few treatments for it, and most of them are downsized adult treatments which cause permanent damage of all kinds. that drug comapnys wont research new drugs for children because its not profitable. that a very small percentage of cancer research monies goes to childhooc cancer. These things are not well know, untill they effect you, but they are very real. 46 children a DAY are dxed with cancer, & die, each and EVERY DAY. When it comes to a sinking ship, or a fire, children are considered first. That should also be true here, but its not. Please help increase the research dallars for childhooc cancer research, and help us find better treatments for our children, maybe even a cure. Children are our future. My son was treated at St Judes in Memphis TN, he got what i found to be the best possable treatment for his cancer. But the possable lng term side effects from maybe curing him, are devistating, and his chance for relapse is very high. They offer up 80 and 85 percent cure rates, but when you check into it, its an 85% chance to survive 5 yrs. Brain tumors in children isnt the death sentance it use to be, but its still DAMN close. Jim Perry
	pookie0126 1/12/2009 5:57 PM	On November 12, 2007 my son Will was diagnosed with Leukemia (Pre-B ALL w/ MLL gene) he was 5 yrs old. I thought that day was the worst I'd face in my life and I vowed to fight for him and against childhood cancer. On November 11. 2008 my son passed away at 6 yrs old. He fought with a courage stronger than any adult I know and though his little body was sick and tired he never complained all the way to the end. He touched many lives in his short 6 years and his fight and the fight of all the other children and parents around the world who have lost a child to cancer or our in the midst of the battle need support for the research of this plaque on our children. No one should have to endure the painful journey of cancer especially our children who need us to keep them safe so that they can have a future. No parent should have to mourn the loss of a child and comfort themselves with the thought that their child no longer has to fight cancer because they are in heaven now. I am greatful that my son Will isn't in pain anymore BUT I want him here with me. Please support childhood cancer research and make our children a priority.
	pookie0126 1/12/2009 6:00 PM	P.S. www.caringbridge.org/visit/willhopkins
	Rally Foundation for Childhood Cancer Re 1/12/2009 6:02 PM	There are so many issues, so many worthy issues...issues that are very important to me and other Americans...and if we are going to tackle a health issue (not health care but a health issue), why in the world wouldn't we tackle the number disease killer of America’s children? I also strongly believe if we just made Americans aware that childhood cancer is the number one disease killer of kids in America and gave them a credible way to help, they would gladly help. But who knows that childhood cancer is the number one disease killer of America’s kids? I know I didn't. My friends, all college graduates and more, didn't know until our good friend's child was diagnosed with a brain tumor at the age of 14 and relapsed at 17. No, childhood cancer is an issue that no one hears about...I do think the childhood cancer community has responsibility but more than that, I think that our great government has a responsibility to educate the American people and give them a credible way to help. Then our government can watch the American people give as only Americans can do. But we, who understand this issue, need help....and you are in a position to help us raise awareness...then you can watch, with pride, the great American people come to the rescue and defeat the number one killer of kids in America. Because, without a doubt, all Americans believe that the children are the future and we must defeat the number one disease killer of our future. Rally Foundation for Childhood Cancer Research which is operating at 93% efficiency this year and 88% last year and other like-minded organizations stand willing and able to help. Won’t you please help us? We are here; we are willing. Please call.
	moonlite 1/12/2009 6:02 PM	I am a grandmother who lost a granddaughter to Rhabdomyosacroma last June. Mr President, to say it is heartbreaking, to say the least, to lose a grandchild to such a terrible disease. I am also a nurse. The pain is indescribable. My granddaughter, Emily was diagnosed at age 5. She had surgery to remove her L) kidney, part of her spleen and tip of her pancreas. She went through months of chemo and radiation. In November 2007, she completed her treatments. She still had a feeding tube, because she was unable to eat since the chemo made her so sick. Emily was chosen to be Children's Hospital Ambassador. She had chosen to go to Walt Disney World for her "make a wish". They co-ordinated that trip with her ambassador trip to Washington, DC. She had a fabulous 3 days @ Walt Disney. Had a photo shoot with Mark Wills and Marie Osmond. Then she went to Washington DC. She met "the President", George Bush. She told everyone that the highlight of her trip was meeting the president of the US. When Emily's cancer returned, Emily asked her mother if she would be Children's Ambassador again, since her cancer had returned. Her mom told her, "no, Emily, it will be another child's turn". Emily reply to her mom "Then, the next ambassador will get to meet the new president. Oh, how I would have loved to have brought her to Washington, DC to see you! Emily will never get that chance. But another child may get that chance if you will please help our children. No child should suffer the way Emily suffered. No parent or grandparent should have to see their child/grandchild die. How I would have done anything, to have had a cure for her. Please help fund childhood cancer research, so that children can have the chance to live their lives as fully as you and I have been so blessed. Joy and His peace I pray for you and your family as you embark on the next 4 years, Linda Thomas
	Rally Foundation for Childhood Cancer Re 1/12/2009 6:03 PM	Our number is 404-847-1272 and our website is www.rallyfoundation.org .
	Angroid 1/12/2009 6:06 PM	We spend a lot of money on cancer research. Some of the money goes to actual research. We have cured no cancer, but discovered many new ones.
	moonlite 1/12/2009 6:07 PM	Here is a picture of Emily with her puppy "RoseBud". She loved puppies and babiesfile:///Users/jeremygreen/Pictures/iPhoto%20Library/Modified/2008/Emily%20Barger/genthumb.ashx.jpeg
	Christine 1/12/2009 6:07 PM	We continue to be proud and happy to stand together with you and your team as lead our through the change we need. We are glad you have given us voice in this change. This year 13,000 families will be told their child has cancer. While hoping for cures, many will endure frightening treatments only to battle potentially disfiguring late effects due to insufficient budgets and archaic support systems. This year 3,000 children will lose their battles to cancer. Please stand up to change this! Let our people know that you are an advocate for saving our children from pain by improving childhood cancer care today and eliminating cancer as a threat to our nation’s youngest citizens. GIVE OUR CHILDREN A VOICE, BE THEIR VOICE OF CHANGE! Christine Falsetti www.kidsSTRONG.org
	adonelan 1/12/2009 6:08 PM	I would like to see research and welfare funding match priorties of need rather than priorties of popularity. Public funding of Research & Development should support programs that are very necessary and critical, that may not draw so many private donations. Why must public money fund programs like breast cancer and pediatric AIDS when those are so heavily funded by private dollars, yet do not serve a greater population than pediatric cancer? Priate money follows popularity. Smart disbursement of public money should follow the need.
	dashw 1/12/2009 6:15 PM	I am a mother of a 6 year old daughter who fought alveolar rhabdomyosarcoma when she was 3 1/2 years old. She is almost 2 years off treatment, but just today we had a scare when she developed symptoms that worried us of a recurrence. We are hopeful that this may be an infection and that she can continue to enjoy her second chance at life. Childhood cancer changes your life forever. Some of us are lucky to have our child get a second chance at life, many are not that fortunate. Kids are our future. They need us to fight for them, stand up for them and speak for them. They need us to be their advocate. President Obama, It is time that childhood cancer is made a #1 priority in healthcare issues. We need more research, funding, new drugs and support. We need immediate healthcare access for every child, so that an early diagnosis is made and treatment started as soon as possible. No parent should hear those dreaded words "your child has cancer" that we heard on June 16, 2006, and no parent should ever have to lose their child to this disease. Please do this for every child who has fought cancer..... for OUR HEROES. Thank you. Ishani's mom
	Austin's Mom 1/12/2009 6:18 PM	President Elect Obama, I am here to ask you to take a stand for all these precious kids who have to battle such a vicious beast at such a young age. My son is currently in the battle against Leukemia. He is eight years old and dreams of being a race car driver. All I dream of is a long and healthy life for him. For all these kids diagnosed with cancer. They deserve more funding and they deserve more eyes to be focused on them. It takes someone who has a strong voice to make a change, to give these kids what they deserve. We have to wipe out this disease. Who has more strength in their words than the President of the United States. You can make the change that all of us Cancer Parents are begging for. We are trying to stand together to make a change but we need your help. Please support Childhood Cancer research. Thank you, Sandra Walberg, Mom to Austin
	momofcancersurivor 1/12/2009 6:22 PM	We as parents do everything we can for our children. That includes fighting for their lives and spreading the word that we need a cure for Childhood cancers and all cancers. My daughter was diagnosis at 5 1/2 months old with Medulloblastoma back in November 2006. One hospital told us that it spread into her spinal fluid. my husband and i could not take that as an answer we took her home and started just regular chemotherapy. You know how hard it is to watch your little baby throw up time after time, her hair falling out, watching posion go into her little tiny body, the talk of a feeding tube because the chemo could make her not eat or swallow as well. Having her older sisters wonder if their baby sister will be there in the morning or who was going to be there to get them up for school in the morning. Myself being away from my family for days at a time. sometimes it feels like months. I handed my little girl over to the OR nurses to date 9 times. She is only 2 1/2. those 9 times where before she even turned 2. I just found out recently where i live that there is 2 other little girls that were just diagnosis with cancer, I spoke with the grandmother of one and she told me that both of these girls are related, like 3 cousins or so. We need to find a cure. We need to save our children. Us parents will not back down we will keep spreading the word. Please make Childhood cancer research a priority.
	Elvie 1/12/2009 6:25 PM	Mr.President I voted for you cause your about change. Please help us change the number of children dying of cancer to 0,cause 1 is way too many.
	crazycancermom 1/12/2009 6:26 PM	My daughter was diagnosed with Acute Lymphoblastic Leukemia at the tender age of 17 months. We methodically and carefully poisoned her for the next 2.5 years to save her life. In an instant, in a breath of time...we became 'one of them'. We suddenly knew the equipment you see in television shows, and laughed at the ridiculous attempts to dramatize the real-life torment my daughter has endured. We left "American dream" far behind, as we learned to live in the moment, cherish each breath, and celebrate Life for the precarious and beautiful blessing it truly is. The best way I can appeal to anyone's heart about helping our kids, is to try to help you understand what we cancer parents live every day. Think of your child sitting with 3 of her friends. One of the children will develop lifelong major health problems. One of the friends will grow up healthy, strong, and perfect. One of the four children will have minor, annoying health problems, but grow up to lead a productive life. And one of the children...will not be here next year. These are the statistics and reality of Childhood Cancer. In my daughter's group, we were lucky. She only has lifelong, major health issues... President Obama, would you want one of your daughters to have to play in this group? Screaming respectfully for the children lost...and the children yet to be lost. Please help them, and the families they will forever change... Alicia Hall mother to warrior Avalon www.avalonsarmyofangels.com
	BTmom 1/12/2009 6:27 PM	These kids are our future, and the future is fading quickly for some of these bright heroes. Kids died yesterday from cancer, kids died today from cancer, more will die tomorrow from cancer. Nearly 2 classrooms full of kids found out today they have cancer......it has to stop. My son will face MRIs for the rest of his life to make sure his brain tumor that took 2 surgeries to remove and resulted in 10 additional surgeries for complications never returns. But we consider ourselves the lucky ones....he is here, he is thriving, his future is bright. We can stop more kids from having to endure this nightmare. Give them HOPE!!
	Gman 1/12/2009 6:27 PM	President-Elect Obama, My son is fighting cancer for the second time. He was diagnosed at three years of age, and eight years later, he relapsed. He is having to endure another round of extremely toxic drugs in order to fight the cancer. Ironically, these very drugs that could save his life, may someday be the cause of a secondary cancer in him, or at best, will affect his development both mentally and physically. With your help and increased funding provided specifically for childhood cancers, I am hopefull that we will someday offer our children a less toxic and better treatment to overcome cancer. He is very excited to watch your inauguration. Cancer dad in Texas
	AJs Dad 1/12/2009 6:28 PM	Dear Mr. President, I've lost my Mom and Dad both to cancer. They both had good long lives. Still, very sad. But, I have to tell you, the pain and sadness of losing my 14 year old son Alex to childhood cancer simply overwhelms those losses. Orders of magnitude. Like an atomic bomb compared to a spark. He was a happy, healthy and athletic young man. He was diagnosed on Fathers Day 2007. And he left us on January 5th, 2008. He is my hero. When your parents die you are an orphan, when your spouse dies you are a widow. But there are no words for parents that lose a child. And, it’s a lifelong sentence. Childhood cancer is considered "rare". Rare has two meanings in this case, happening to your child or someone elses. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive. It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE? And yet, awareness and funding for childhood cancer is woefully inadequate. The National Cancer Institute's budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. And, while the American Cancer Society and others parade bald kids around, it's for sympathy only, the funding they give towards childhood cancer is the same, 3%. Two major fundraisers for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that. While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today! And drug companies? Well, there just aren’t enough cases to make it profitable to research childhood cancer. They admit it. But boy have we got restless leg syndrome down eh? And don’t tell me how research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues. I fight back. I am a Co-Founder of People Against Childhood Cancer. Our mission is to raise awareness of childhood cancer. My Co-Founder is fighting this disease right now, and she will beat it, because she, like them all, is a hero. Join the fight and read the stories at http://curechildhoodcancer.ning.com. Remember, it could be your kid.... AJs Dad
	buddy 1/12/2009 6:30 PM	Our 7 yr old granddaughter was diagnosed with ALL leukemia at the age of 23 months. It is now 20 months after her BMT and she is still 100% donor and hopefully cancer free. But it required 27 months of chemotherapy, 6 months off treatment, a combined relaspe in both the bone marrow and central nervous system, more chemo, radiation, and a bone marrow transplant to arrive at this point. She essentially lost 5 years of her early childhood to this disease and struggles daily with the side effects of her treatments. We rejoice to see her improving, but mourn for what she has lost. We hope for the best and long to see new treatments that are less deadly and dangerous for all childhood cancers. Thank you for listening.
	Seth's Mom 1/12/2009 6:31 PM	My 14 year old son Seth died of cancer, only living 10 months after diagnosis. When we were told he had cancer, I thought we can "fix" this. He is a healthy kid who has to endure some trials but he will be ok. WRONG! How in the hell does this happen to our kids and we all don't know it is happening? I did not know this world existed until we were in it! It IS the responsibility of each and every person who knows this world exists to get the word out that our kids need help. It is WAR and the news media needs to tell EVERYONE we need help. Don't you turn your back on this war and wait until it is your child they have to say, "sorry, but you are dying at age 14". Our kids deserve better from all of us. I don't want to hear "we will try to fix you" but "we will fix you." It is a right our kids deserve. www.caringbridge.org/visit/sethsimpson I am sorry Seth, we failed you.
	DebiRuth 1/12/2009 6:32 PM	Dear President Obama, My great-niece Lily is battling leukemia. Until she was diagnosed, I had no idea how little funding went into finding the cure for leukemia. Please make research on childhood cancers a high priority for your administration. We NEED to find a cure, to save these children's lives.
	tonie 1/12/2009 6:32 PM	President Elect Obama, I am asking for increased funding to fight childhood cancer. I cannot imagine a more worthy cause. Though I have lost no one in my familty to leukemia, I find it has affected many children we know. A day does not go by that I do not pray for those children and their families. Thank you for your consideration.
	Super Lane's Mommy 1/12/2009 6:34 PM	For 1 ½ years, my young son Lane fought a very difficult battle, a battle that no one, especially a baby, should have experienced. Before he was nine months old, Lane was diagnosed with neuroblastoma, a pediatric cancer that takes the lives of many children each year. During 16 months of treatment he experienced multiple rounds of chemo therapy, numerous surgeries and fought many infections caused from low immunity. Lane has won his battle. This brings us so much joy. Sadly, however, many children lose their lives to cancer each day. Something needs to be done to reduce, or even eliminate, childhood cancer. THIS is the change our country needs. We must ensure that all children get to enjoy a childhood, grow, prosper and LIVE. Everything now known about childhood cancer has been learned through research. Had my son been alive and diagnosed with cancer 20 years ago, most likely he would not have survived. Through research, however, treatment has been improved, which has lead to more and more children living a full life. We are so thankful that Lane received the treatment he needed to survive. There are many children, however, that are still losing their battles. Much more research is needed to help improve treatments and find cures. I urge you to create change; support biomedical research for pediatric cancer. Financial support will fund research that will allow pediatric oncologists to investigate the most critical questions about childhood cancer and to translate these findings into better, less toxic treatments. The survival rate for children with neuroblastoma, the type of cancer my son battles, is less than 50 percent. Every 16 hours a child with neuroblastoma dies, and this is just one type of pediatric cancer. Pediatric cancer research will save lives. Right now, somewhere in the United States, there are seven children that are fighting for their lives and will not live to see tomorrow. These children deserve the change that you can lead. I urge you to commit the resources needed to help children and families who have been or will be faced with this terrible disease. Children are our future. Every child deserves a chance to live a full life, maybe even become a future leader. Please support pediatric cancer research. Do it for my son and the many other children that are facing the hardest battle of their lives. You never know, it could potentially save the life of your child, grandchild, neighbor or friend. Thanks in advance for your support,
	Lisa_gig 1/12/2009 6:35 PM	Dear President Obama, Last year it was declared that we are winning the war on cancer; cancer death rates were dropping. This may be true for adult cancers, but not for pediatric cancers. We know the causes of many adult cancers, and many adult cancers are the result of our very own actions. This is not true for pediatric cancers. The causes of pediatric cancers and brain tumors still eludes scientists. Although pediatric cancers and brain tumors are very different from adult tumors, we still treat these cancers with the same medicines. Many drugs used as a first line of defense in treating childhood cancers have not changed in 20 years. These drugs are toxic to these little bodies and leave lasting effects if the cancer does not take their lives first. We are letting our children down. How do I know these things? I'm the mother of a very brave, amazing ten year old girl who has been battling a brain tumor for the last eight and half years. She has had numerous sugeries and endured 8 different chemotherapy protocols in addition to radiation therapy. These treatments have stunted her growth, stopped her body from producing necessary hormones, and left her paralyzed on half of her body. Yet her tumor continues to grow. We not only live with the fear that her tumor may kill her but with the fear of secondary cancers due to the treatment she has already recieved if she survives this. We are running out of treatment options. Many people say, "but childhood cancer is rare. Why should we fund this?" I say because our children are the future and they depend on us to protect them now while they are young. Those of us in the pediatric cancer world depend on our children's doctors and medical professionals to come up with the cures to protect our children because we cannot do this on our own. We are asking you and all of America to come up with the funding to help these doctors find the cures necessary to save our children. I am asking you, as a parent, to fund pediatric cancer research and save our children, our future. Thank you. Sincerely, Lisa Giguere
	MomOnAMission 1/12/2009 6:35 PM	Dear President Obama~ Please, please, please increase funding for childhood cancer. I wish our son, Johnny Romano's story was different than the thousands that will write you. But it's not. At the tender age of seven Johnny was diagnosed with standard risk ALL with a 3 1/2 year protocol. May 16, 2008, just mere months before the end of treatment (September 23), he relapsed. No one saw it coming, least of all us. Once a child is 'categorized' (low, standard, high risk) the same protocol is followed no matter what happens during treatment. It's no fault of the incredible doctor's or nurses what so ever. They don't have the resources to know what to do if a child falls outside their 'category'. Obviously Johnny fell outside his category, so the only option the doctor's had was to throw EVERY drug known to them at Johnny's cancer which had morphed into AML (considered one of the most deadly of the leukemia's) -- all of which are used on adults with NO previous research on children. Unfortunately, the cancer stayed one step ahead of the doctor's and Johnny lost his battle on September 23, 2008, the last day he was scheduled to have treatment had he not relapsed. No parent should EVER watch their once amazingly strong child struggle and gasp to take their last breath as they are taken off life support. Don't confuse the terms 'great strides', 'advances', and 'high survival rate' with the word 'cure'. With the diagnoses of cancer, doctor's never use the term 'cure', they will quickly correct you and say -- 'long term survivor'. Cancer sucks. Please help us. Warmest Regards, Julie Romano A Mom On A Mission j-grom.blogspot.com ps: I would be happy to help you, go before Congress or the Senate to speak about this horrific disease. triplejms@comcast.net
	summer73064 1/12/2009 6:39 PM	Someone once asked me what year it was that my life changed. For those parents that have heard the words, "you child has cancer', that is the year everything changed. My daughter was diagnosed in 2005. She had surgery to correct a problem in her intenstinal tract. The doctors removed a large portion of her intestinal tract which contained a large polyp. She was diagnosed with Non-hodkins Large Cell Lymphoma. It is rare for a child to have that type of cancer but she was very lucky. The cancer was caught early and had not spread. She recovered from surgery quickly and had a short course of treatment. I will never forget hearing those words we dreaded the most. I will never forget seeing my daughter go through a bone marrow extraction and spinal tap. I will never forget shaving the very last of her hair and I will never forget how beautiful she was when she was bald. She visited her oncologist every month for a year and had a PET scan every other month that 1st year out. She continues to see her doctor every 6 months and will see him until she is 10 years past her diagnosis. We are fortunate to have the help from an organization called the "Four Diamonds Fund". They've helped us with all of her medical bills. In addition to more funding for research I would like to see something done to protect and help those families with issues with medical bills not covered by insurance. The last thing you want to worry about when you find out your kid has cancer is medical bills. Please do all that you can, President Obama, so that someday no parent will have to tell their kid they have cancer.
	nukeboy 1/12/2009 6:39 PM	From one father to another ... what if it were your girls ? No child should have to suffer and you can help ensure that they don't. Long live Jeddediah Thomas Smith.

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