Enhancing the lives of families and children by providing education and advocacy, emotional and practical support, and most of all... HOPE....because kids can't fight cancer alone!
Tuesday, September 28, 2010
Sunday, September 26, 2010
Cox Farms Pumpkin Patch Day POSTPONED
Due to rain, we've had to postpone the Candlelighters Family Day at the Pumpkin Patch. Please check back tomorrow for the new date.
Thursday, September 23, 2010
Free Telephone Conference ~ September 28, 2010
Cancer Treatment May Impact School: How to Convince Your Child's Teacher
Presented by Beyond the Cure
Conference time zone is Central Time
Tuesday, September 28, 2010
2 - 3 p.m. CT
Presenter: Mindy Aylward, RN, BSN, CPON.
Oncology Outreach Educator-- Pediatric Hematology/Oncology Akron Children's Hospital.
Who should participate?
The National Children’s Cancer Society has designed the web workshops for parents/guardians, nurses and social workers.
Register at Beyond the Cure
Presented by Beyond the Cure
Conference time zone is Central Time
Tuesday, September 28, 2010
2 - 3 p.m. CT
Presenter: Mindy Aylward, RN, BSN, CPON.
Oncology Outreach Educator-- Pediatric Hematology/Oncology Akron Children's Hospital.
Who should participate?
The National Children’s Cancer Society has designed the web workshops for parents/guardians, nurses and social workers.
Register at Beyond the Cure
Tuesday, September 21, 2010
Drug Protects Heart in Children Receiving Common Chemotherapy
Drug Protects Heart in Children Receiving Common Chemotherapy
Children treated with an anthracycline have more than a threefold increased risk of cardiac death 30 years after treatment compared with their untreated peers.
The drug dexrazoxane, which can protect heart tissue from the oxidative damage caused by doxorubicin and other anthracycline drugs, significantly reduced the occurrence of long-term heart damage in children undergoing treatment for high-risk acute lymphoblastic leukemia (ALL).
Children treated with an anthracycline have more than a threefold increased risk of cardiac death 30 years after treatment compared with their untreated peers.
The drug dexrazoxane, which can protect heart tissue from the oxidative damage caused by doxorubicin and other anthracycline drugs, significantly reduced the occurrence of long-term heart damage in children undergoing treatment for high-risk acute lymphoblastic leukemia (ALL).
Friday, September 17, 2010
Top Docs, Researchers Urge Congress To Step Up Childhood Cancer Fight
Top Docs, Researchers Urge Congress To Step Up Childhood Cancer Fight
"McCaul and Sestak will roll the panels' recommendations into a legislative agenda that includes:
- Incentives for drug development (S. 3697): would give pharmaceutical companies that bring a new pediatric drug to market priority review status for a more profitable drug they are developing
- Grants for specialized training to primary care physicians to better identify side effects and re-occurrence of symptoms (HR 2109)
- Greater access to clinical trials
- Greater emphasis on survivorship and impact of childhood cancer on families
- Full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act (passed in 2009) to increase pediatric cancer research at the National Cancer Institute and create a pediatric cancer registry at the Centers for Disease Control
Most recently, through their efforts on the Caucus, McCaul and Sestak have helped secure $4 million in childhood cancer research funding for FY 2010.
Facts About Childhood Cancer
- Leading killer of children in the United States among diseases
- Kills more people each year ages 1-20 than asthma, diabetes, cystic fibrosis, and AIDS combined
- 35 children are diagnosed each day
- Studies and drug development specific to pediatric cancers remain underfunded
- Since 1980 only one new drug has been approved for treatment of childhood cancer, compared with 50 that have been approved for adults
- For every $6 in federal research per AIDS patient and every $1 per patient with breast cancer, a child with cancer receives only 30 cents
- 3 out of 5 survivors will suffer life-long side effects"
Source:
Congressman Michael McCaul (R-TX10)
"McCaul and Sestak will roll the panels' recommendations into a legislative agenda that includes:
- Incentives for drug development (S. 3697): would give pharmaceutical companies that bring a new pediatric drug to market priority review status for a more profitable drug they are developing
- Grants for specialized training to primary care physicians to better identify side effects and re-occurrence of symptoms (HR 2109)
- Greater access to clinical trials
- Greater emphasis on survivorship and impact of childhood cancer on families
- Full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act (passed in 2009) to increase pediatric cancer research at the National Cancer Institute and create a pediatric cancer registry at the Centers for Disease Control
Most recently, through their efforts on the Caucus, McCaul and Sestak have helped secure $4 million in childhood cancer research funding for FY 2010.
Facts About Childhood Cancer
- Leading killer of children in the United States among diseases
- Kills more people each year ages 1-20 than asthma, diabetes, cystic fibrosis, and AIDS combined
- 35 children are diagnosed each day
- Studies and drug development specific to pediatric cancers remain underfunded
- Since 1980 only one new drug has been approved for treatment of childhood cancer, compared with 50 that have been approved for adults
- For every $6 in federal research per AIDS patient and every $1 per patient with breast cancer, a child with cancer receives only 30 cents
- 3 out of 5 survivors will suffer life-long side effects"
Source:
Congressman Michael McCaul (R-TX10)
Friday, September 10, 2010
President Obama Proclaims September Childhood Cancer Awareness Month
The White House
Office of the Press Secretary
For Immediate Release September 10, 2010 Presidential Proclamation--Childhood Cancer Awareness Month
- - - - - - -
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
A PROCLAMATION
Each year, thousands of children face the battle against cancer with inspiring hope and incredible bravery. When a child is diagnosed with cancer, an entire family and community are affected. The devotion of parents, grandparents, loved ones, and friends creates a treasured network of support for these courageous children. During National Childhood Cancer Awareness Month, we honor the young lives taken too soon and the survivors who face chronic health challenges, we celebrate the progress made in treatment and recovery, and we rededicate ourselves to fighting this disease so all children may have the chance to live a full and healthy life.
While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15. Too many families have been touched by cancer and its consequences, and we must work together to control, and ultimately defeat, this destructive disease. I invite all Americans to visit Cancer.gov for more information and resources about the symptoms, diagnosis, and treatment of childhood cancers.
Tragically, the causes of cancer in children are largely unknown. Until these illnesses can be cured, my Administration will continue to support investments in research and treatment. The National Cancer Institute, the Federal Government's principal agency for cancer research, is supporting national and international studies examining the risk factors and possible causes of childhood cancers.
The health reforms included in the landmark Affordable Care Act advance critical protections for individuals facing cancer. Provisions in the law prohibit insurance companies from limiting or denying coverage to individuals participating in clinical trials, the cornerstone of cancer research. After recovering from cancer, children can no longer be denied insurance coverage due to a pre-existing condition. It also requires all new plans to provide preventive services without charging copayments, deductibles, or coinsurance, increasing access to regular checkups that can help detect and treat childhood cancers earlier. The Affordable Care Act eliminates annual and lifetime caps on insurance coverage and prohibits companies from dropping coverage if someone gets sick, giving patients and families the peace of mind that their insurance will cover the procedures their doctors recommend.
This month, we pay tribute to the health-care professionals, researchers, private philanthropies, social support organizations, and parent advocacy groups who work together to provide hope and help to families and find cures for childhood cancers. Together, we will carry on their work toward a future in which cancer no longer threatens the lives of our Nation's children.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2010 as National Childhood Cancer Awareness Month. I also encourage all Americans to join me in recognizing and reaffirming our commitment to fighting childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this
tenth day of September, in the year of our Lord two thousand ten, and of the Independence of the United States of America the two hundred and thirty-fifth.
BARACK OBAMA
Office of the Press Secretary
For Immediate Release September 10, 2010 Presidential Proclamation--Childhood Cancer Awareness Month
- - - - - - -
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
A PROCLAMATION
Each year, thousands of children face the battle against cancer with inspiring hope and incredible bravery. When a child is diagnosed with cancer, an entire family and community are affected. The devotion of parents, grandparents, loved ones, and friends creates a treasured network of support for these courageous children. During National Childhood Cancer Awareness Month, we honor the young lives taken too soon and the survivors who face chronic health challenges, we celebrate the progress made in treatment and recovery, and we rededicate ourselves to fighting this disease so all children may have the chance to live a full and healthy life.
While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15. Too many families have been touched by cancer and its consequences, and we must work together to control, and ultimately defeat, this destructive disease. I invite all Americans to visit Cancer.gov for more information and resources about the symptoms, diagnosis, and treatment of childhood cancers.
Tragically, the causes of cancer in children are largely unknown. Until these illnesses can be cured, my Administration will continue to support investments in research and treatment. The National Cancer Institute, the Federal Government's principal agency for cancer research, is supporting national and international studies examining the risk factors and possible causes of childhood cancers.
The health reforms included in the landmark Affordable Care Act advance critical protections for individuals facing cancer. Provisions in the law prohibit insurance companies from limiting or denying coverage to individuals participating in clinical trials, the cornerstone of cancer research. After recovering from cancer, children can no longer be denied insurance coverage due to a pre-existing condition. It also requires all new plans to provide preventive services without charging copayments, deductibles, or coinsurance, increasing access to regular checkups that can help detect and treat childhood cancers earlier. The Affordable Care Act eliminates annual and lifetime caps on insurance coverage and prohibits companies from dropping coverage if someone gets sick, giving patients and families the peace of mind that their insurance will cover the procedures their doctors recommend.
This month, we pay tribute to the health-care professionals, researchers, private philanthropies, social support organizations, and parent advocacy groups who work together to provide hope and help to families and find cures for childhood cancers. Together, we will carry on their work toward a future in which cancer no longer threatens the lives of our Nation's children.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2010 as National Childhood Cancer Awareness Month. I also encourage all Americans to join me in recognizing and reaffirming our commitment to fighting childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this
tenth day of September, in the year of our Lord two thousand ten, and of the Independence of the United States of America the two hundred and thirty-fifth.
BARACK OBAMA
Pepsi Refresh Project ~ Fund Less Toxic Therapy for Children
This idea is currently in 7th place for a $250,000 grant!
FUND LESS TOXIC THERAPIES FOR CHILDREN WITH CANCER
Arms Wide Open Childhood Cancer Foundation
Please go and vote here (you can vote each day in September):
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
FUND LESS TOXIC THERAPIES FOR CHILDREN WITH CANCER
Arms Wide Open Childhood Cancer Foundation
Please go and vote here (you can vote each day in September):
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
Tuesday, September 7, 2010
Congressional Pediatric Cancer Caucus hosts first Childhood Cancer Summit
NEWS: The Congressional Pediatric Cancer Caucus will be
hosting its first Childhood Cancer Summit on September 16, 2010 from 9am
-10:30am in 2325 Rayburn House Office Building, Washington, DC.
In recognition of September as Childhood Cancer Awareness month, the Pediatric Cancer Caucus, co-chaired by Joe Sestak (D-PA) and Michael McCaul (R-TX), is planning a summit to educate Members of Congress and staff on issues related to childhood cancer. This briefing will provide information on a variety of topics from research, to drug development, to survivorship.
Panels of experts will be presenting the information, including Dr. Susan Weiner, Children's Cause for Cancer Advocacy's President and Founder, Cynthia Duncan, Director of Advocacy at CureSearch , Dr. Peter Adamson from Children's Oncology Group, Nancy Goodman from KIDS V CANCER, and doctors from Texas Children's Cancer Center, Children's Cancer Hospital at MD Anderson Cancer Center, Childrens Hospital of Philadelphia and Memorial Sloan Kettering.
These participants will address current legislation that promotes drug development and survivorship, as well as needed advancements in the field of childhood cancer to better treat and prevent this disease.
hosting its first Childhood Cancer Summit on September 16, 2010 from 9am
-10:30am in 2325 Rayburn House Office Building, Washington, DC.
In recognition of September as Childhood Cancer Awareness month, the Pediatric Cancer Caucus, co-chaired by Joe Sestak (D-PA) and Michael McCaul (R-TX), is planning a summit to educate Members of Congress and staff on issues related to childhood cancer. This briefing will provide information on a variety of topics from research, to drug development, to survivorship.
Panels of experts will be presenting the information, including Dr. Susan Weiner, Children's Cause for Cancer Advocacy's President and Founder, Cynthia Duncan, Director of Advocacy at CureSearch , Dr. Peter Adamson from Children's Oncology Group, Nancy Goodman from KIDS V CANCER, and doctors from Texas Children's Cancer Center, Children's Cancer Hospital at MD Anderson Cancer Center, Childrens Hospital of Philadelphia and Memorial Sloan Kettering.
These participants will address current legislation that promotes drug development and survivorship, as well as needed advancements in the field of childhood cancer to better treat and prevent this disease.
Inside NCI: A Conversation with Dr. Crystal Mackall about Pediatric Oncology
Inside NCI: A Conversation with Dr. Crystal Mackall about Pediatric Oncology
The chief of NCI's Pediatric Oncology Branch (http://pediatrics.cancer.gov/) talks about the research being done in her lab at NCI and areas of pediatric cancer research where researchers are poised to make major advances. The video was originally published in the NCI Cancer Bulletin (http://www.cancer.gov/ncicancerbulletin/) on September 7, 2010.
The chief of NCI's Pediatric Oncology Branch (http://pediatrics.cancer.gov/) talks about the research being done in her lab at NCI and areas of pediatric cancer research where researchers are poised to make major advances. The video was originally published in the NCI Cancer Bulletin (http://www.cancer.gov/ncicancerbulletin/) on September 7, 2010.
Thursday, September 2, 2010
September is Childhood Cancer Month!
Spread awareness! Thirty facts - one for each day of the month. Please share this list with your family and friends.
Don't forget to wear the Gold Ribbon in honor of Childhood Cancer Awareness Month. Visit the Candlelighters store for awareness items.
Let's make the Gold Ribbon as recognizable as the Pink Ribbon!
30 Childhood Cancer Facts
1. One in every 330 American children will be diagnosed with cancer before age 20.
2. The average high school has 2 students who are cancer patients or survivors. One in four elementary schools has a child with cancer.
3. Cancer is the leading cause of death by disease in children under the age of 15 in the US.
4. The causes of most childhood cancers are unknown. It can not be prevented.(Many adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents)
5. On average, 36 children in the US are diagnosed each day with cancer.
6. Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class or geographic region. In the US, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65.
7. Childhood cancer research is vastly and consistently underfunded.
8. Chemotherapy was first shown to be effective in childhood cancer.
9. The discovery of the first tumor suppressor gene occurred in children with cancer.
10. The National Cancer Institute’s budget is $4.8 Billion. The total for all grants related to childhood cancer is $173 Million. That’s only 3.6% of the federal governments cancer budget. Aren’t our kids worth more than that?
11. Some types of childhood leukemia have survival rates over 90%. Some types of brain tumors have a 0% survival rate. If it’s your child, it’s either 0 or 100%. Anything else means nothing.
12. Overall, nearly 80% of children diagnosed with cancer survive. While 80% on a test is pretty good, the deaths of one out of every 5 children diagnosed is not.
13. Two-thirds of children who are cured of cancer in childhood end up with at least one long-term health problem arising from their treatment. One-third have severe complications such as mental retardation, lung damage or congestive heart failure. In all, they are four times as likely to have serious health problems as their siblings.
14. The Children’s Oncology Group/CureSearch is an NCI funded pediatric cancer research cooperative group. They treat over 90% of US kids diagnosed with cancer. St. Jude’s Research Hospital has a world class public relations dept, and they do excellent research, but they don’t treat nearly as many kids as CureSearch-COG doctors do.
15. 10,400 children are diagnosed with cancer every year. 2,000 of them die each year.
16. Become a regular blood donor. Kids in cancer treatment often need blood products.
17. Over the past 20 years, there has been an increase in the overall rate of childhood cancer.
18. Leukemias and brain tumors are the most common types of childhood cancer accounting for more than half of all diagnoses.
19. There is no “good” cancer. Never, ever say this to a parent.
20. Treatment for the most common types of leukemia goes on for over 3 years. Most adult cancer treatment is counted in months.
21. Just because a child’s hair has grown back, does not mean that treatment is over.
22. Adolescents and young adults have a higher rate of survival when treated on pediatric treatment plans compared to adult plans.
23. Cancer is not contagious.
24. Children in treatment often have lowered immune systems and can’t fight off simple germs like colds and flu. Stay away if you’re sick.
25. Childhood cancer effects the whole family. If you can, befriend a sibling-they could use the attention and support.
26. Research is the only hope for finding a cure for childhood cancer.
27. What not to say to a parent: What did you do to cause the cancer? Have you tried (fill-in-the-blank herbal cure)? I don’t know how you do it-I could never handle it. (real quotes)
28. A parent may have a smile on their face as they talk to you, but that doesn't mean they don't cry in the night, it only means that they are trying to make you comfortable so that you will keep talking to them. Families in cancer treatment become very isolated. After a while, they stop telling you how their child really is when you ask, because they learn that people want to hear “fine” and move on.
29. Send jokes to the family effected by cancer. Nobody needs to laugh more than someone hanging out on a kids cancer ward.
30. If your child is a friend of a child with cancer, encourage that friendship. Kids with cancer miss a lot of school and need friends to keep them connected.
Don't forget to wear the Gold Ribbon in honor of Childhood Cancer Awareness Month. Visit the Candlelighters store for awareness items.
Let's make the Gold Ribbon as recognizable as the Pink Ribbon!
30 Childhood Cancer Facts
1. One in every 330 American children will be diagnosed with cancer before age 20.
2. The average high school has 2 students who are cancer patients or survivors. One in four elementary schools has a child with cancer.
3. Cancer is the leading cause of death by disease in children under the age of 15 in the US.
4. The causes of most childhood cancers are unknown. It can not be prevented.(Many adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents)
5. On average, 36 children in the US are diagnosed each day with cancer.
6. Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class or geographic region. In the US, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65.
7. Childhood cancer research is vastly and consistently underfunded.
8. Chemotherapy was first shown to be effective in childhood cancer.
9. The discovery of the first tumor suppressor gene occurred in children with cancer.
10. The National Cancer Institute’s budget is $4.8 Billion. The total for all grants related to childhood cancer is $173 Million. That’s only 3.6% of the federal governments cancer budget. Aren’t our kids worth more than that?
11. Some types of childhood leukemia have survival rates over 90%. Some types of brain tumors have a 0% survival rate. If it’s your child, it’s either 0 or 100%. Anything else means nothing.
12. Overall, nearly 80% of children diagnosed with cancer survive. While 80% on a test is pretty good, the deaths of one out of every 5 children diagnosed is not.
13. Two-thirds of children who are cured of cancer in childhood end up with at least one long-term health problem arising from their treatment. One-third have severe complications such as mental retardation, lung damage or congestive heart failure. In all, they are four times as likely to have serious health problems as their siblings.
14. The Children’s Oncology Group/CureSearch is an NCI funded pediatric cancer research cooperative group. They treat over 90% of US kids diagnosed with cancer. St. Jude’s Research Hospital has a world class public relations dept, and they do excellent research, but they don’t treat nearly as many kids as CureSearch-COG doctors do.
15. 10,400 children are diagnosed with cancer every year. 2,000 of them die each year.
16. Become a regular blood donor. Kids in cancer treatment often need blood products.
17. Over the past 20 years, there has been an increase in the overall rate of childhood cancer.
18. Leukemias and brain tumors are the most common types of childhood cancer accounting for more than half of all diagnoses.
19. There is no “good” cancer. Never, ever say this to a parent.
20. Treatment for the most common types of leukemia goes on for over 3 years. Most adult cancer treatment is counted in months.
21. Just because a child’s hair has grown back, does not mean that treatment is over.
22. Adolescents and young adults have a higher rate of survival when treated on pediatric treatment plans compared to adult plans.
23. Cancer is not contagious.
24. Children in treatment often have lowered immune systems and can’t fight off simple germs like colds and flu. Stay away if you’re sick.
25. Childhood cancer effects the whole family. If you can, befriend a sibling-they could use the attention and support.
26. Research is the only hope for finding a cure for childhood cancer.
27. What not to say to a parent: What did you do to cause the cancer? Have you tried (fill-in-the-blank herbal cure)? I don’t know how you do it-I could never handle it. (real quotes)
28. A parent may have a smile on their face as they talk to you, but that doesn't mean they don't cry in the night, it only means that they are trying to make you comfortable so that you will keep talking to them. Families in cancer treatment become very isolated. After a while, they stop telling you how their child really is when you ask, because they learn that people want to hear “fine” and move on.
29. Send jokes to the family effected by cancer. Nobody needs to laugh more than someone hanging out on a kids cancer ward.
30. If your child is a friend of a child with cancer, encourage that friendship. Kids with cancer miss a lot of school and need friends to keep them connected.
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