Life with Cancer is offering another kids program next Tuesday:
Learn about cancer through discussion and activities and find ways to manage emotions and changes that come when someone in the family has cancer.
Tuesday, June 23, 2009
10 a.m. - 4 p.m.
Life with Cancer Family Center
8411 Pennell, VA 22031
Through discussion, art and games children ages 5-12, will have an opportunity to learn about cancer and its treatments, talk about the feelings and changes they are experiencing, and meet with other children who understand what it's like.
To register contact Jenny Eckert, LCSW, Children's Program Manager at Jennifer.Eckert@inova.org or at 703-698-2536.
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!
Friday, June 19, 2009
Thursday, June 11, 2009
Tuesday, June 9, 2009
Kids with Cancer and Super Sibling Support Day
Life with Cancer is offering a combined day for kids with cancer and their siblings. See the attached flyer for more details!
Thursday, June 4, 2009
Planet Cancer
This is an excerpt written by a mom of a medulloblastoma survivor on the 5th anniversary of his surgery.
__________________________________________________________
Planet Cancer
For us it was like someone had just pushed us off of this planet that we were on and we fell down down down until we reached the planet of childhood cancer with a thud. Everything was foreign and frightening. We could hardly breathe let alone comprehend all that he was telling us about what the year ahead would look like. We didn't really want to know him because he was a pediatric oncologist (though he was warm, kind, and friendly). We didn't really want to know anyone else on that planet either right at first because we didn't want to be there.
But, we learned very fast about that planet and we quickly started wanting to meet the other people there or who had been there because we had so much in common. We came to love and appreciate all of Doug's medical caregivers. It became hard at times to relate to people living on our previous planet.
We discovered that the cancer planet was divided into continents and countries just like our previous planet. We lived on the coninent of pediatric cancer, in the country of brain tumors and the city of medulloblastoma. When someone from the other planet would tell us about Great Aunt Sally who had stomach cancer they thought that we could relate, but though it was on the same planet it was on a whole other continent.
Those who wanted to help most often flew in planes at 25,000 feet and dropped in supplies. The supplies were much appreciated because it's very hard to do the basic everyday things that are needed to survive when you live on planet cancer in the pediatric country. It often felt like tar on our feet moving through massives webs. Some days we could barely move at all. The airplane people were often kind and might try to ask us questions, but the noisy engine and the distance made it difficult. The ones who came down to visit were most often ones who had lived somewhere on that planet before. It is a rare person who's never lived on planet cancer especially in the country of pediatric cancer who comes and walks the paths and trudges through the jungles with us. That's why it was good to connect with the others who had no choice to leave just like us.
When we came back to this planet it took a very long time to adjust. My friend who lived overseas for many years said that it took her about 3 years to start feeling comfortable back in the USA. I think that we were on planet cancer for a year, had to visit regularly for another year and now it has taken us these last 3 years to adjust and start feeling more comfortable back on this planet. I had no idea that it would take this long and what that adjustment would be like. And, of course we hope that we never are forced back to planet cancer.
__________________________________________________________
Planet Cancer
For us it was like someone had just pushed us off of this planet that we were on and we fell down down down until we reached the planet of childhood cancer with a thud. Everything was foreign and frightening. We could hardly breathe let alone comprehend all that he was telling us about what the year ahead would look like. We didn't really want to know him because he was a pediatric oncologist (though he was warm, kind, and friendly). We didn't really want to know anyone else on that planet either right at first because we didn't want to be there.
But, we learned very fast about that planet and we quickly started wanting to meet the other people there or who had been there because we had so much in common. We came to love and appreciate all of Doug's medical caregivers. It became hard at times to relate to people living on our previous planet.
We discovered that the cancer planet was divided into continents and countries just like our previous planet. We lived on the coninent of pediatric cancer, in the country of brain tumors and the city of medulloblastoma. When someone from the other planet would tell us about Great Aunt Sally who had stomach cancer they thought that we could relate, but though it was on the same planet it was on a whole other continent.
Those who wanted to help most often flew in planes at 25,000 feet and dropped in supplies. The supplies were much appreciated because it's very hard to do the basic everyday things that are needed to survive when you live on planet cancer in the pediatric country. It often felt like tar on our feet moving through massives webs. Some days we could barely move at all. The airplane people were often kind and might try to ask us questions, but the noisy engine and the distance made it difficult. The ones who came down to visit were most often ones who had lived somewhere on that planet before. It is a rare person who's never lived on planet cancer especially in the country of pediatric cancer who comes and walks the paths and trudges through the jungles with us. That's why it was good to connect with the others who had no choice to leave just like us.
When we came back to this planet it took a very long time to adjust. My friend who lived overseas for many years said that it took her about 3 years to start feeling comfortable back in the USA. I think that we were on planet cancer for a year, had to visit regularly for another year and now it has taken us these last 3 years to adjust and start feeling more comfortable back on this planet. I had no idea that it would take this long and what that adjustment would be like. And, of course we hope that we never are forced back to planet cancer.
I'm Cured....Now What? A Conference for Teen and Young Adult Survivors of Childhood Cancer and their Parents
July 25, 2009
8 am - 5:00 pm
Life with Cancer Family Center
Fairfax, Virginia
I'm cured . . . . now what?
If you are a young person (16 and over) who is a survivor of childhood cancer, join us for this FREE and FUN one-day event. If you are a parent of a teen or young adult who is a survivor of childhood cancer, this conference is for you, too.
LEARN ABOUT:
Late Effects
Fertility
Stress-Busters and Complementary Therapies
Nutrition and Bone Health
Resources
• TRY
Zumba, Kickboxing, and Yoga (don’t forget your sneakers!)
Reiki and Massage
• SHARE COMMON CONCERNS
For Survivors - Sexuality, Dating and Disclosure
For Parents - Empowering and Letting Go
• BUILD YOUR OWN TREATMENT SUMMARY
• MEET NATIONALLY RECOGNIZED EXPERTS AND
SPEAKERS
Wendy Hobbie is the Coordinator of the Long-Term Follow-up Clinic for childhood cancer survivors at Children’s Hospital of Philadelphia, one of the first comprehensive follow-up clinics in the U.S. In addition to co-authoring Childhood Cancer Survivors, Wendy has published numerous articles on late effects, the role of the nurse practitioner in follow-up care, and risk taking behaviors of childhood cancer survivors. She is the editor of a textbook for professionals, Survivors of Childhood Cancer: Assessment and Management, and is a consultant, researcher, and frequent lecturer.
Nancy Keene is a nationally respected writer, advocate for children with cancer, and parent of a long term childhood cancer survivor. She has written several books including Childhood Leukemia: A Guide for Families, Friends and Caregivers; Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers; Chemo, Craziness & Comfort; Working with Your Doctor; and Your Child in the Hospital. Nancy co-authored Childhood Cancer Survivors: A Practical Guide to Your Future with Wendy Hobbie, and has edited Educating the Child with Cancer and Childhood Brain and Spinal Cord Tumors.
Dr. Jill Ginsberg is Director of the Cancer Survivorship Program at Children’s Hospital of Philadelphia. She is a graduate of Cornell University Medical College, completing her pediatric residency at Johns Hopkins Hospital and hematology/oncology fellowship at CHOP. Her research includes the medical and psychosocial late effects of cancer therapy and is particularly interested in fertility preservation. Through her efforts, the Children’s Cancer Center at CHOP was the first pediatric program to be named a “Center of Excellence” by Fertile Hope.
Josh Sundquist is a Paralympics ski racer and nationally known inspirational speaker since age 10. He has been featured on CNN Heroes and in USA TODAY. At nine Josh was diagnosed with bone cancer. He underwent chemotherapy and his left leg was amputated. Josh was “cured” of the disease at age thirteen. He took up ski racing, and was named to the US Paralympics Ski Team for the 2006 Paralympics in Torino, Italy. He has been a keynote speaker at schools, Fortune 500 companies, and at the White House.
Sage Bolte is a Certified Social Work Oncology Counselor at Life with Cancer and a PhD candidate in Social Work at Catholic University in Washington, DC., researching the impact of cancer/treatments on young adult survivors’ sexual self. She is a frequent national speaker on sexuality and cancer, provides individual and family counseling, and facilitates breast cancer and partner support groups.
Dr. Rebecca Selove is a clinical psychologist at Children’s National Medical Center. She is particularly interested in the quality of life of survivors of pediatric cancers and provides evaluations and counseling in survivor follow-up clinics in DC and Fairfax. She completed her Ph.D. at Vanderbilt University, a Masters in Public Health from St. Louis University and has over two decades of experience in mental health, medical and university settings.
Nancy Sacks is a Research Coordinator and Registered Dietician with the Long Term Follow-up Clinic for childhood cancer with Children’s Hospital of Philadelphia. She co-chaired the Nutrition Sub-Committee of the Children’s Oncology Group (COG) helping to develop guidelines for nutrition support. She has participated in numerous research projects and publications in the areas of cancer nutrition, complementary alternative therapies, informed consent/compliance of adolescents with chemotherapy and is a frequent national speaker.
• NETWORK WITH OTHERS!
Please visit Life With Cancer to view the program brochure and to register.
Jel Sert adds Childhood Cancer Gold Ribbon to Fla-Vor-Ice Packaging!
We have exciting news to share from our national office!
Kensington, MD - Candlelighters Childhood Cancer Foundation is excited to announce the production of the first Gold Ribbon specially marked commercial product. Available now in your grocery store are specially marked boxes of Jel Sert's Fla-Vor-Ice. Fla-Vor-Ice® was introduced by Jel Sert in 1969, and quickly became the leading freezer pop in the United States. The Jel Sert Company is proud to extend its corporate commitment to sponsor the Gold Ribbon for Childhood Cancer on its Fla-Vor-Ice products.
Jel Sert’s Fla-Vor-Ice has delighted families for over 35 years with great tasting freezer bars made with 25% real fruit juice. Now proudly displaying the gold ribbon for childhood cancer awareness, Fla-Vor-Ice is helping Candlelighters Childhood Cancer Foundation support our nation’s littlest cancer patients.
To thank Jel Sert for their commitment to our nation's children with cancer, we are asking that you take a few minutes to thank the company. You can email them using the drop down at the bottom of the page at: http://www.jelsert.com/contact_us.asp or you can call them at: 800-323-2592. Please let them know how thrilled we are that they have chosen to support this childhood cancer cause.
We also encourage you to check our your local grocery stores and make sure that they are carrying the specially marked Fla-Vor-Ice product.
Finally, we would like to compile pictures of our children enjoying eating Fla-Vor-Ice. Please email any pictures that you have to Ruth Hoffman at: ruthihoffman@gmail.com. See our website for examples of two children who are excited to see the gold ribbon on the product: Candlelighters - Jel Sert
Now that we have our FIRST specially marked gold ribbon product, let's work together to see more of them! If you have contacts to other company management, please contact Ruth so that we can let them know of Jel Sert's commitment, as well as work with them to discuss how their company can build awareness of childhood cancer too!
Together we can build awareness of childhood cancer!
Kensington, MD - Candlelighters Childhood Cancer Foundation is excited to announce the production of the first Gold Ribbon specially marked commercial product. Available now in your grocery store are specially marked boxes of Jel Sert's Fla-Vor-Ice. Fla-Vor-Ice® was introduced by Jel Sert in 1969, and quickly became the leading freezer pop in the United States. The Jel Sert Company is proud to extend its corporate commitment to sponsor the Gold Ribbon for Childhood Cancer on its Fla-Vor-Ice products.
Jel Sert’s Fla-Vor-Ice has delighted families for over 35 years with great tasting freezer bars made with 25% real fruit juice. Now proudly displaying the gold ribbon for childhood cancer awareness, Fla-Vor-Ice is helping Candlelighters Childhood Cancer Foundation support our nation’s littlest cancer patients.
To thank Jel Sert for their commitment to our nation's children with cancer, we are asking that you take a few minutes to thank the company. You can email them using the drop down at the bottom of the page at: http://www.jelsert.com/contact_us.asp or you can call them at: 800-323-2592. Please let them know how thrilled we are that they have chosen to support this childhood cancer cause.
We also encourage you to check our your local grocery stores and make sure that they are carrying the specially marked Fla-Vor-Ice product.
Finally, we would like to compile pictures of our children enjoying eating Fla-Vor-Ice. Please email any pictures that you have to Ruth Hoffman at: ruthihoffman@gmail.com. See our website for examples of two children who are excited to see the gold ribbon on the product: Candlelighters - Jel Sert
Now that we have our FIRST specially marked gold ribbon product, let's work together to see more of them! If you have contacts to other company management, please contact Ruth so that we can let them know of Jel Sert's commitment, as well as work with them to discuss how their company can build awareness of childhood cancer too!
Together we can build awareness of childhood cancer!
Tuesday, June 2, 2009
Childhood Cancer Advocacy
Each year families affected by childhood cancer are mobilized to visit Capitol Hill to ask Congress to make funding for childhood cancer an urgent national priority. Click on Reach the Day - Conquer Childhood Cancer for more information.
From the Leukemia & Lymphoma Society's newsletter:
Funding Sought for Conquer Childhood Cancer Act
The Caroline Pryce Walker Conquer Childhood Cancer Act unanimously passed Congress in July 2008. This law authorizes $30 million annually for five years to fund pediatric cancer research, awareness programs and the creation of a national childhood cancer registry. But while this funding was "authorized" last year, it needs to be "appropriated" each year as part of the annual budget process.
Despite a nearly 80 percent survival rate for pediatric cancer patients, more than 2,000 children lose their battle with the disease each year. In fact, cancer remains the number one cause of death from disease among children. Full funding of this law would do the following:
- Increase pediatric cancer research at NCI to enhance doctors' knowledge of the causes, diagnosis, treatment and long-term effects of the disease in children.
- Expand public awareness of childhood cancer through education programs, peer-to-peer and parent-to-parent support networks, psychological counseling and other support services.
- Create a national childhood cancer registry at the Centers for Disease Control and Prevention to track the epidemiology of pediatric cancer.
These funds are critical to advancing our knowledge and treatment of cancer in children. Despite the advances that have already been made, the treatments for some childhood cancers are inadequate. And nearly two-thirds of all childhood cancer survivors experience late-effects of their cancer and treatment, such as psychosocial effects and an increase in the development of secondary cancers.
LLS has joined in a letter as part of the Alliance for Childhood Cancer, urging Congress to provide funding for programs created under the Act. Advocates should be on the lookout in the near future for ways they can play a role in urging their representatives to support funding for these vital programs. The Alliance for Childhood Cancer letter is attached below:
From the Leukemia & Lymphoma Society's newsletter:
Funding Sought for Conquer Childhood Cancer Act
The Caroline Pryce Walker Conquer Childhood Cancer Act unanimously passed Congress in July 2008. This law authorizes $30 million annually for five years to fund pediatric cancer research, awareness programs and the creation of a national childhood cancer registry. But while this funding was "authorized" last year, it needs to be "appropriated" each year as part of the annual budget process.
Despite a nearly 80 percent survival rate for pediatric cancer patients, more than 2,000 children lose their battle with the disease each year. In fact, cancer remains the number one cause of death from disease among children. Full funding of this law would do the following:
- Increase pediatric cancer research at NCI to enhance doctors' knowledge of the causes, diagnosis, treatment and long-term effects of the disease in children.
- Expand public awareness of childhood cancer through education programs, peer-to-peer and parent-to-parent support networks, psychological counseling and other support services.
- Create a national childhood cancer registry at the Centers for Disease Control and Prevention to track the epidemiology of pediatric cancer.
These funds are critical to advancing our knowledge and treatment of cancer in children. Despite the advances that have already been made, the treatments for some childhood cancers are inadequate. And nearly two-thirds of all childhood cancer survivors experience late-effects of their cancer and treatment, such as psychosocial effects and an increase in the development of secondary cancers.
LLS has joined in a letter as part of the Alliance for Childhood Cancer, urging Congress to provide funding for programs created under the Act. Advocates should be on the lookout in the near future for ways they can play a role in urging their representatives to support funding for these vital programs. The Alliance for Childhood Cancer letter is attached below:
Monday, June 1, 2009
Free Teleconference from Beyond the Cure
Thursday, July 23, 2009 1:30 p.m. CT
Nutrition During and After the Treatment of Childhood Cancer
Presenter: Terezie Mosby, MS, RD, CSP, IBCLC, LD/N, Dietitian for Bone Marrow Transplant, Leukemia and Immunology Outpatient Services at St. Jude Children’s Research Hospital
Goal: Managing nutritional concerns during the treatment of childhood cancer is a challenge. During this teleconference learn how to approach nutritional concerns that impact a child’s diet during treatment and identify good eating habits after treatment that promote good health and healing.
The final 15 minutes will be open to a question and answer session.
Deadline to register for this teleconference: Monday. July 13, 2009.
Nutrition During and After the Treatment of Childhood Cancer
Presenter: Terezie Mosby, MS, RD, CSP, IBCLC, LD/N, Dietitian for Bone Marrow Transplant, Leukemia and Immunology Outpatient Services at St. Jude Children’s Research Hospital
Goal: Managing nutritional concerns during the treatment of childhood cancer is a challenge. During this teleconference learn how to approach nutritional concerns that impact a child’s diet during treatment and identify good eating habits after treatment that promote good health and healing.
The final 15 minutes will be open to a question and answer session.
Deadline to register for this teleconference: Monday. July 13, 2009.
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