Winning the War on Cancer?

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My daughter was diagnosed with Rhabdomyosarcoma in June of 2008 at the age of 14 years old. She was affected in the proximity of the end of the spine and close to the rectal area. She was a stage 3 but with no mestatis. After 5 1/2 weeks of brutal radiation to those areas, blood transfusions, operations to insert a feeding tube via her stomach, a port via her chest and a procedure to lift her ovaries to hopefully shield them from permanent damage....she is now on her second to last chemo. admit. and thankfully I guess you could say she is a lucky one. Alhough she will forever have side effects that include nerve damage to her feet and legs that as of right now require her to wear braces on her feet to be able to walk properly. This is due to one of the chemo. drugs known as Vincristine. She also has trouble with her hands when trying to open things or tie them or even button her shirt. Her prognosis is good but she will also forvever be scarred by the monster that robbed her of her childhood and made her feel pain and fear. She will NEVER be the same happy, outgoing, bubbly girl that we had before CHILDHOOD CANCER!!!!!
I will say a prayer everynight that a cure will come along that will put hope and joy into every parent and child that is struggling with the mind numbing pain of childhood cancer and relief into the hearts of the parents and children that would never have experience it.

Rebecca of TX 12:54AM January 18, 2009

Children's lives are unscripted: blank pages filled with hope and promise. In a normal life, the American child is expected to learn to read and write, tie their shoes, learn to drive and grow up. This same child no longer has to worry about many childhood diseases like the mumps, rubella and even the chicken pox due to the miracle of modern vaccinations. Depending on their interests, the pages in their book of life are filled with childhood firsts: first day of school, a swim meet victory, a holiday band concert, the prom and high school graduation. The media helps celebrate these rites of passage. There is an unpublished chapter in the American childhood story: those kids with cancer. Perhaps photos of sick kids don't sell papers or draw high ratings. It is not easy to witness their suffering. Even the National Cancer Institute, in its report dated Dec.2 2008, avoided the controversial topic. While declines in cancer incidence and death are true for adults, childhood cancer continues to be on the rise. The NCI also does not mention that it has cut the budget for funding of Pediatric Cancer for the past 5 years. The NCI does not even maintain a data base for pediatric cancer. How could the news media get a sense of the problem without government statistics?
We must be careful of statistics. Words like "rare" and "good cure rate" should not be associated with childhood cancer. Cancer is still the number #1 disease killer of children. Yes, car accidents, suicide and drug overdoses displace it when children become teens. The fact remains that it kills more kids than any other disease. Secondly, statistically, more kids get leukemia than any other cancer and than the cure rate has increased dramatically to 80% in the past decade. Sadly, the cure rate for other cancers has shown little or no improvment. And there are no statistics of what happen to children five years after treatment with complications and recurrence. Doctors are just now compiling anecdotal evidence of the long-term complications they suffer. In an era of No Child Left Behind, there are 42 children diagnosed daily with cancer. These kids are being left behind, abandoned to fight cancer with old adult therapies not created to treat a child's growing body. The appalling lack of funding and media attention to this growing problem is an American tragedy. To a child suffering from any cancer, statistics are meaningless. They just want to feel better and start writing the next chapter in their book.
I know this because my daughter was diagnosed with ALL Leukemia on March 14, 2007. Her active chemotherapy treatment is scheduled to end May 21, 2009. Her courage and strength, like that of other cancer kids, inspires me every day to help these kids. As for the cost-return argument, these kids represent the promise and hope for the American future. We can't afford to leave them behind. Please give them a voice and publish their chapter.
http://www.caringbridge.org/visit/fionamonahan

Sherry Monahan of PA 1:15PM December 19, 2008

Dear Brian, Please consider doing an article on "The Need For Funding In Pediatric Cancer Research", too many innocent children are dying, right here in the USA of cancer! We are supposed to take care of our children, but without research dollars, we can't. They are our FUTURE, and we NEED to increase research money for PEDIATRIC CANCER, for it is just as important, if not more, than other cancers. Children are our future, we need to help save them, not just QUIETLY, let them die. Please do your part in this devastating battle, and feature an article on the for Pediatric Cancer Research Funding and HELP raise AWARENESS about this disease. It is out there and can strike any family at any time, maybe your child or someone you know, no one is IMMUNE to cancer. While children who have this disease DON"T deserve it, THEY DO DESREVE OUR HELP!!!!! Thank you for your interset in helping this cause, Jamie Cataldi

Jamie Cataldi of PA 9:46AM December 03, 2008

Dear Brian, Please consider doing an article on "The Need For Funding In Pediatric Cancer Research", too many innocent children are dying, right here in the USA of cancer! We are supposed to take care of our children, but without research dollars, we can't. They are our FUTURE, and we NEED to increase research money for PEDIATRIC CANCER, for it is just as important, if not more, than other cancers. Children are our future, we need to help save them, not just QUIETLY, let them die. Please do your part in this devastating battle, and feature an article on the for Pediatric Cancer Research Funding and HELP raise AWARENESS about this disease. It is out there and can strike any family at any time, maybe your child or someone you know, no one is IMMUNE to cancer. While children who have this disease DON"T deserve it, THEY DO DESREVE OUR HELP!!!!!

Jamie Cataldi of PA 9:43AM December 03, 2008

Your article was very impressive. The only thing I don’t understand is how come there is no mention of childhood cancer. Is it because you like the American cancer society feel as though children don’t get sick. Let me please tell you some facts. The American cancer society only allocates 3% of it’s total revenue towards childhood cancer research. Yes, that’s right 3%. You can see for yourself on there web-site. When I asked them why I was told because kids don’t get sick. But, they use the children’s stories to raise money. But, yet I’m told children don’t get sick. Double standards if you ask me. Use the children but don’t save them.
I would like to tell you a story. My 12 year old daughter Aimee was diagnosed with a DIPG (diffuse intrinsic pontine glioma) on September 27th 2007. DIPG affects the pons portion of the brainstem, rendering nervous system function impossible. Symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing, headaches, dizziness and eventually they may become paralyzed. That is if they live long enough, most die within the first year. Unfortunately, these symptoms usually worsen rapidly because the tumor is rapidly growing and are miss diagnosed from the start because of the similarity to other non threaten childhood diseases. There are 120 different types of brain tumors, 3,500 children are diagnosed with some form of a brain tumor of which 40% (1,400) of these children will not survive? 12,000 children every year are diagnosed with some form of cancer of which 35% (4,200) do not survive. Childhood cancer is very different from cancer in adults, although the treatment is the same. Children are given the same chemo drugs that adults are given just watered down. This needs to stop, and it needs to stop now. Our children deserve a better chance at survival then they are being offered. Since children’s bodies and brains are not fully developed do you think it is right that they are giving the same drug as an adult. How can a doctor decide how much of a dose to give a child. Maybe, that is why are children are dying at such a high rate because their little bodies can’t handle the amount of toxin’s they are receiving in the chemo drugs. Children and Adults are NOT the same. Please, also give the children the same respect as you have given adults with cancer. Let the public know that yes, there is hope for adult cancer but not for the children. Some childhood cancers have seen much progress but most have not. They are the ones that need to be addressed. Aimee is fully aware of what her out come will be but it is her dream, that no child or parent will ever have to hear the words your child has cancer and there is NOTHING yes NOTHING we can do. As a parent hearing those words were hard, but watching my child die and not being able to do anything is even harder. To learn more about Aimee’s story and others like her please go to: http://www.icouldbeyourchild.org/ or http://teamunite.net/ or http://curechildhoodcancer.ning.com/ or visit Aimee’s caring bridge site at http://caringbridge.org/visit/aimeedickey I hope you can find it in your heart to help us save all the children. Help us win the war on childhood cancer for all the children past, present, and future. Remember it could be your child!!
Thank you for listening,
Annette McKeon

Annette McKeon of PA 6:54AM November 29, 2008

Imagine taking your 3 year old for a common x ray on his foot and all of a sudden you are being told that your very healthy normal little boy has cancer, Leukemia to be exact. That is my life and it was shattered on February 14th 2008. My son is in the fight for his life and all anyone ever talks about is adult cancers. All the funding out there given for cancer, our children get less than 3% of that. This is just not acceptable. Did you know that September is National Childhood Cancer Awareness Month? Probably not. Once October rolls around everything is pink. Where is the gold in September?
Please join in the fight for our children. They are our future. Visit www.curechildhoodcancer.ning.com. Let's give these kids a chance to grow up. We need more awareness and we need more funding.

Michelle of 10:46PM November 23, 2008

there IS something different this time. i do BELIEVE there will be a cure, and hopefully soon.
but SOMETHINGS remain the safe. The lack of funding for research for pediatric cancer. Did you know September is National Childhood Cancer Awareness Month? its ok. most people didnt. no gold ribbons everywhere, like the pink we saw everywhere last month.
please consider an article on this struggle. Adult treatments dont have the same effect on growing bodies, and often the "survivors" struggle on. Pediatric Cancer ISNT RARE. It steals more of our children than any other illness combined.
AND these kiddos cant vote. THIS ISNT OK.
thank you for reading
www.curechildhoodcancer.ning.com

dari mcmanus of NY 8:37PM November 23, 2008

SInce the average age of diagnosis for childhood cancer is 6 years old, the potential years of life lost for these kids is 68 years per child. If this is not a reason to raise awareness for this not-so-rare disease that kills more children than any other disease and affects 1/300 kids by the time that they turn 20, then what would be a good reason? Present treatments find cures for 3/4 kids, but what about the other 1/4? And what about the horrible late effects that beset 2/3 survivors--life-threatening late effects like secondary cancers and multi-organ dysfunction? And let's not forget how these survivors will fight for insurance coverage and fight for education with cognitive deficits caused by the cures themselves.
Just when science seems to be so promising with targeted treatments on the horizon, government has yanked the necessary funding to support scientists--thus science has been halted.
CHildhood cancer is different from adult cancer and these developing brains and bodies cannot handle the toxic treatments. We need to put focus on our kids, too.

Kelly Parent of MI 6:02PM November 23, 2008

Cancer is a vicious killer of children and noone wants to talk about it. While most people are eating turkey and being thankful with their families this Thursday. I will be quietly remembering my daughter who should should be celebrating her 17th birthday this Thanksgiving but instead died on Mother's Day 2004 at the age or 12. She left this world with a tear in her eye after courageously fighting this beast for 9 months. "I don't want to die mom. I wan't get my driver's license and go to college." Such simple wishes. Such potential lost. Such a nightmare that we went through from diagnosis to death. It is horrifying to think that young children suffer like this, and NOBODY wants to acknowledge, talk, or DO ANYTHING about it.
Childhood Cancer is the #1 killer of children. Did you know that? Did you know it is underfunded by a long shot. Innocent children are suffering and dieing! They deserve better!
Alecia should be here eating turkey and birthday cake and doing great things with her life. And yet- she is not. Silence is not golden. Stand up to cancer - yes! But STAND UP for out CHILDREN- FIRST AND FOREMOST. These beautiful innocent little people need our help and DESERVE BETTER than this!
www.aleciasmakeyourmark.com

Jan Louder of WY 8:28AM November 22, 2008

In Feb of this year I was thrown into the world of childhood cancer when my 7 year old son was diagnosed with medulloblastoma, a type of cancerous brain tumor. He has since completed treatment (hopefully, as long as the cancer stays in remission) but during our stay at St. Jude I witnessed new friends lose their children. Yes, better treatment is always good but we need more effort into researching prevention. These kids die terrible deaths not to mention the horror of treatment itself. There is a small group of us trying to get HR 7153 Nation Childhood Brain Tumor Prevention Network Act of 2008 reintroduced into the House of Representatives and into the Senate in January 2009. The purpose of this Act is to have a national research campaign of one of the leading causes of most common form of solid tumor in US children, brain tumors. What HR 7153 Will Accomplish is to initiate a comprehensive study of childhood brain tumors (CBT) to determine risk factors and causes. This has never been done before. 5% of CBTs are thought to be genetic but the other 95% the cause is unknown. There is more information on this bill at: http://www.opencongress.org/bill/110-h7153/show or http://btan.org/index.php/2008/10/17/hr-7153-the-national-childhood-brain-tumor-prevention-network-act-of-2008/
I hope the medical community finds there is money to be made in researching prevention as it should also lead to better treatment and keeping people in remission.

R. Herr of MI 6:25AM November 22, 2008