Friends of Heroes - National Light The Night Team » Patient Services

Coping With Childhood Leukemia and Lymphoma

Jenn — Sat, 30 May 2009 20:00:06 +0000

If you or someone you love has been diagnosed with a blood cancer like leukemia, lymphoma or myloma, there is help for you.

The Leukemia & Lymphoma Society, headquartered in White Plains, New York, provides a library of resources through their website and their Information Resource Center. You may feel helpless or overwhelmed with decisions. These free resources and support services are funded by generous donors to The Leukemia & Lymphoma Society.

If you need assistance ordering free materials please call the LLS Information Resource Center at (800) 955-4572 Monday through Friday, 9 a.m. to 6 p.m. EST or contact your local chapter.

For more information specifically related to childhood blood cancers, visit their Childhood Blood Cancers resource page.

The following excerpts are sample materials from their library:

Coping With Childhood Leukemia and Lymphoma

Introduction

Families face uncertainty when they are told that their child has leukemia or lymphoma. It is a time filled with new people and situations, worries and change. It may help to learn that cancer survival rates for children have improved significantly during the last several decades due to new and better treatments. Doctors, nurses and scientists are working together around the world to continue to improve outcomes for children diagnosed with leukemia or lymphoma – researchers continue to search for the causes, develop better treatments and tailor therapies to decrease long-term effects. Social workers, psychologists, psychiatrists and other health professionals are also working to understand how to help children and families manage cancer and its treatment and maintain a good quality of life.
Continue reading by downloading the .pdf or order a free printed copy via the LLS online order form.

Learning & Living With Cancer

Introduction

For children with cancer and their parents, returning to school builds hope for the future. Attending school is a big part of feeling normal and productive. Yet, going back to school also brings new challenges to families whose main focus has been getting through treatment.

You may wonder:

What challenges will my child face?

What help is needed for my child to be successful?

What laws protect my child?

Where do I turn for help?

Continue reading by downloading the .pdf or order a free printed copy via the online order form.

Source: lls.org

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Lighting The Night – a Decade of Difference

Jenn — Wed, 03 Sep 2008 06:44:32 +0000

This year we commemorate the tenth year of Light The Night walks which honor blood cancer patients in 230 cities across North America.

This week we embark on the first of ten weeks of Light The Nights and celebrate the $39 million dollars raised for blood cancer research and patient services.

Through The Leukemia & Lymphoma Society, great strides have made “A Decade of Difference”. In the past 10 years:

Nearly half a million patients and their caretakers have called the LLS Information Resource Center and received critical information about blood cancers, therapy options and issues surrounding treatment and survival.
Nearly $40 million was disbursed to patients through the LLS Patient Assistance program to help them get the treatment they needed to fight their cancer.
Over 100,000 patients and family members found comfort and hope through LLS First Connection and Family Support Groups.
LLS granted $425 million to more than 400 scientists searching for cures and improved treatments for patients.
LLS funding contributed to the development of a host of new drugs that are affecting patient survival and quality of life.
LLS-funded researchers began working in novel areas that hold great promise for finding cures and better treatments including new, less toxic stem cell transplants, immunotherapies and other targeted therapies.
Our Advocacy Network has successfully supported pro-patient legislation that will:
- Help advance blood cancer research
- Extend Medicare coverage to include oral anti-cancer drugs
- Help fund efforts to reach underserved blood cancer patients

From: lightthenight.org

Team Friends of Heroes is proud to be a part of this tremendous cause to find a cure for blood cancers and to make a difference in the lives of patients through the free services offered by LLS!

Blood cancers can strike at any time to people of all ages, ethnicities and degrees of health. We continue to raise funds and awareness for a cure to be found and so that families do not have to lose loved ones to these diseases.

Your support is vital in this effort! Please join us by registering for our team or donating towards our cause!

Visit http://teams.lightthenight.org/friendsofheroes to start making a difference today!

Research Q & A

Christy — Thu, 31 Jul 2008 04:28:13 +0000

RESEARCHER Q&A

Craig Okada, M.D., Ph.D.

Dr. Okada is assistant professor of medicine at Oregon Health & Science University. He is a recipient of an LLS Translational Research Program grant for his cutting-edge lymphoma research.Dr. Okada, what are you and your team working on?
We are developing an immunotherapeutic approach to the treatment of T-cell malignancies. We are using monoclonal antibodies that bind to a unique molecule found on the surface of different lymphoma cells (TCR idiotype) and combining antibodies with tumor TCR vaccine.

What’s novel or innovative about this approach?
Using monoclonal antibodies and TCR idiotype vaccine may be able to more specifically attack tumor cells without injuring normal immune cells. The vaccine will hopefully stimulate long lived anti-tumor activity, reducing the risk of recurrent disease.How will it one day help patients?
Patients with T-cell lymphoma tend to have a less favorable outcome than patients with B-cell lymphoma, the most common form of the disease. We hope that developing T-cell lymphoma specific treatments will improve the treatment for these patients.

Are you close to clinical trials?
We are still several years from clinical trials.

What other projects are you excited about and believe will benefit patients?
There are several new drugs that have anti-tumor activity in T-cell malignancies. We are actively determining in clinical trials how well they work and if they can be used in combination with older drugs without adding significant toxicities.

What are some of your hobbies and non-research interests?
When I am not working in the laboratory or seeing patients, I enjoy hiking, rock climbing and spending time with my family.

Article Courtsey of LLS Please visit www.lls.org for more information.

LLS Coloring Books Help kids Cope

Christy — Thu, 31 Jul 2008 04:24:00 +0000

LLS Coloring Books Help Kids Cope

The Stem Cell Transplant Coloring Book is for children with blood cancer who are coping with having a stem cell transplant. It is also for other young stem cell transplant patients, siblings, friends and classmates of the young patient and children with a parent who is having a stem cell transplant. The pictures and activity pages depict the experiences of Sam and Serena, two young stem cell transplant patients. Through these experiences, the coloring book provides
support and encouragement.Younger children may enjoy using the coloring book with parents, older siblings
or staff to help them read the captions and color smaller details. School-age
children can enjoy the coloring book on their own. Additionally, caregivers may
find that with children of any age, using it together helps to generate discussion,
questions and expression of feelings.

Read it online or order a free copy.

Pictures of My Journey, a coloring and activity book, helps children ages 3 to 11 cope with the new people, situations and concerns that may be part of their childhood cancer experience.The interactive book provides many opportunities for young patients (as well as siblings, classmates and friends) to have fun and be creative. Topics cover the hospital stay, treatment, school, returning home to family and friends and plans for the future.

Healthcare professionals, health educators and caregivers can use the material with children to help generate discussion and express feelings about having cancer. The book also includes two color postcards and a children’s resource list.

Read it online or order a free copy.

Article Courtsey of LLS Please visit www.lls.org for more information.

Congress Overrides Medicare Veto

Christy — Mon, 28 Jul 2008 18:47:50 +0000

Congress Overrides Medicare Veto

On July 15th, President Bush vetoed the Medicare Improvements for Patients and Providers Act of 2008 (H.R. 6331). However, Congress acted quickly to override the veto; the House voted 383-41 and the Senate voted 70-26. Had the veto gone through, Medicare reimbursement rates to doctors would have been cut by 10.6 percent, among other things.The bill was of particular concern to blood cancer patients, as the bill included a provision to extend the “freeze” by 18 months on the Medicare reimbursement formula for the radioimmunotherapies Bexxar^® and Zevalin^®, which are used to

treat non-Hodgkin lymphoma. Without such a freeze, radioimmunotherapy reimbursement rates would be drastically reduced and access to this valuable therapy would be threatened for many lymphoma patients.Congress was under pressure from doctors and elderly patients to pass the legislation quickly as the proposed cuts went into effect on July 1. Instead of the cuts, the Medicare reimbursement rates will remain the same for the remainder of 2008 and will increase by 1.1 percent in 2009. While this legislation is a short-term fix for the Medicare reimbursement rates, the goal for lawmakers is now to create a long-term solution.

Thank you to all of the advocates across the country that took a moment to urge their elected officials to override the veto and ensure that patients with lymphoma or other blood cancers have access to Medicare coverage and potentially lifesaving treatments.

To become an LLS eAdvocate, sign up at action.lls.org.

Article courtsety of the LLS newsetter.

For more info please visit lls.org

Patient Services Profile: The Trish Green Back To School Program for the Child with Cancer

FOH Team Leaders — Sun, 26 Aug 2007 17:20:00 +0000

Each year, approximately, 12,100 children are diagnosed with cancer in the United States. Treatments include surgery, radiation, chemotherapy, and stem cell transplantation. Even after the initial treatment, child patients may face many years of illness, treatment, stress and post-treatment adjustments.

Returning to school can offer a feel of normalcy for families after treatment.

In an effort to support families and ease the transition from active treatment to daily life for pediatric cancer patients, The Leukemia & Lymphoma Society and Lance Armstrong Foundation developed a program to increase communication among healthcare professionals, parents, patients and school officials (campus nurses, counselors, teachers, and administrators).

The objectives of the program are to educate attendees and enable them to:

Describe common childhood cancers and treatments
Identify challenges cancer survivors face upon returning to school and throughout their time in school and college
Understand laws that protect childhood cancer survivors’ rights
Have strategies to help meet the students’ short- and long-term educational needs
Access resources that support schools and families including those from The Leukemia & Lymphoma Society and the Lance Armstrong Foundation

Teachers can learn what accommodations might be needed for their returning cancer student and can help classmates understand what the student is going through. Because of their daily contact with the student, teachers also play a key role if any health concerns should arise in the classroom.

Cancer survivorship is a lifelong journey, and school reentry is a major milestone in that journey.

For more on the Trish Green Back To School Program, visit your local Society chapter for live educational programs and materials, videos and other printed resources. Online program information at The Leukemia & Lymphoma Society Website.