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Childhood Cancer STAR Act Introduced to Advance Pediatric Cancer Research

Childhood Cancer STAR Act Introduced to Advance Pediatric Cancer Research

In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) today introduced the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act.  This bipartisan legislation will advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing resources for survivors and those impacted by childhood cancer.

Alliance Group photo 2015

Alliance Group Advocates gathered in Washington, D.C., for Childhood Cancer Action Days 2015

 

“Too many young people’s lives have been cut short by cancer.  These kids and their families who’ve battled this disease inspire us to take action.  The Childhood Cancer STAR Act will help young cancer patients and their families get access to potentially life-saving treatments, support survivors, and move us another step closer toward our goal of ending pediatric cancer,” said Senator Reed.

“This bipartisan legislation will continue the advances in research, prevention and care for our loved ones and families impacted by childhood cancer,” said Senator Capito. “The Childhood Cancer STAR Act gives parents and patients access to the information they need to make vital decisions about treatment and care post-treatment. This legislation will also give those who understand the unique needs of childhood cancer patients a seat at the table when decisions about cancer care are taking place.”

Read more:

Senate Press Release:
http://www.reed.senate.gov/news/releases/reed-and-capito-introduce-bipartisan-childhood-cancer-star-act

House Press Release:
https://mccaul.house.gov/media-center/press-releases/mccaul-van-hollen-speier-reed-and-capito-introduce-bipartisan-childhood

 

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

NoteStream

Gold Ribbon Hero Angel S

“Reason this person is a Gold Ribbon Hero: Angels fought a hard 5 year 3 month battle with Neroblastoma and always with a smile and his mother Sonia by his side. He inspired so many who followed him on his Instagram pg : Angel Santos . Angel was a warrior of life, he had a great heart ,he loved music, spongbob , soccer and his family . He tried to bring awareness to childhood cancer participated in relays for life and sharing his story. He was Always smiling despite all he was going through . He lost his battle on 03/15/2014 at the age of 11 years old. Fly high little warrior.” – Grace G.

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Gold Ribbon Hero Dezma B

“Reason this person is a Gold Ribbon Hero: Dezma was 10 years old when she ran her first 3k for Texas Children’s Hospital.  Little did she know only a week later, she would be diagnosed with Acute Myeloid Leukemia at that same hospital.

After 14 months of lengthy hospitals stays, chemotherapy, bone marrow transplant and countless procedures, Dezma succumb to the disease.

Dezma touched many heart with her unwavering faith in God and her infectious, beautiful smile.

After she passed a group of family and friends raised $100,000 towards AML research through The Leukemia & Lymphoma Society.  To this day, we continue to raise money in hopes of finding a cure.

We were blessed to have had a complete year with our daughter after she was diagnosed with a terminal cancer.  We hope to see the day when a cure to cancer has been found.” – Lynda F.

 

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Gold Ribbon Hero Zoe H.

“Reason this person is a Gold Ribbon Hero: Zoe was diagnosed with b-cell acute lymphoblastic leukemia on February 13th, 2015. We spent 11 day in the hospital. During that time Zoe recieved a port, spinal, bone marrow and several chemo treatments. We went home Zoe done great with minor side effects after 30 days they done a spinal and bone marrow.  Zoe is in remission since march. Treatments continue weekly and in May Zoe got sick and was admitted into the hospital.  It took a week to find out what was wrong. She had a rhino virus and a fungal infection in her lungs. Got her on the right meds and now she is doing better.  Two hours to treatment every week.” – Charlotte H.

 

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Comprehensive Cancer Care for Children and Their Families – FREE Download

Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer SocietyComprehensive Cancer Care for Children and Their Families:
Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society
(2015)

Authors

Sharyl J. Nass and Margie Patlak, Rapporteurs; National Cancer Policy Forum; Board on Health Care Services; Institute of Medicine; The National Academies of Sciences, Engineering, and Medicine

Description

Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system.

To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children’s Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.

Topics

Publication Info

126 pages | 6 x 9
Paperback
ISBN: 978-0-309-37441-5

To download the full book click here.

 

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Children Diagnosed with Cancer: Understanding the Healthcare System

Understanding the Healthcare System         

For a young child, just a routine check-up or basic blood test can be absolutely terrifying.  But when a child is suddenly diagnosed with cancer and facing extended hospital stays and complicated medical procedures, both the young patient and his parents have to quickly adjust to the complex, scary, and strange world of oncology and advanced medicines.  The ACCO is dedicated to helping families facing a cancer diagnosis navigate this new and different world as comfortably and completely as possible, so families can focus their time and energy on comforting their child and making the best possible decisions for his or her long-term health and happiness.

So what can one expect from the healthcare system?

Children and families coping with childhood cancer face a number of challenges in the days and weeks immediately after diagnosis.  When first entering into the confusing world of a hospital for tests and treatment, the medical centers or hospitals can seem confusing and even frightening; even the hospital rooms may appear scary at times.  Healthcare professionals, physicians, and nurses are always well-meaning and dedicated to the long-term care of the patient, but they have many questions to ask and a lot of information to share, and the process can be simply overwhelming.  Sometimes, it can even feel like the doctors and nurses are speaking a completely different and unknown language.  But perhaps most frustrating is the need to handle financial concerns when all you want to do is comfort your child.  Medical insurance professionals are available to help navigate through the paperwork and help you understand your coverage.  In some cases, insurance companies may require advanced approval on various procedures and tests or may have queries related to payment.

So where are kids with cancer treated?

Most of the time children with cancer undergo treatment at large and advanced pediatric cancer centers located in major cities around the country.  Many medical facilities specializing in pediatric oncology are members of the Children’s Oncology Group, which dictates a standard of care and prescribed guidelines so that families are well informed about all available treatment options, their benefits, and their short- and long-term risks.

Most children facing childhood cancer receive treatment in an inpatient pediatric oncology unit, although in some cases an outpatient treatment may be given at a doctor’s office, at a hospital clinic, or even at the patient’s home.  In some cases, the best course of treatment may be participation in an on-going clinical trial into new and development treatment protocols; the Children’s Oncology Group maintains lists of current clinical trials and offers suggestions as to the best way to become involved in this treatment option.

Treating adolescents with cancer presents a series of unique challenges for both medical staff and parents.  Adolescents want to be treated as adults and may resist treatment and hospitalization in a pediatric unit.  Yet in most cases, pediatric oncology units are still the best medical option for adolescents because their cancers are more closely associated with childhood cancers than adult cancers.  Many pediatric hospitals now offer separate areas designated for adolescents in order to accommodate their special emotional and physical needs.

The American Childhood Cancer Organization is dedicated to helping parents understand, navigate, and master the complicated world of pediatric oncology in order to give their child the best possible chance at fighting, and beating, childhood cancer.  If your child is facing a cancer diagnosis, we encourage you to visit our website at www.acco.org and view our extensive library of free resources developed by families who have been where you are and designed to make your child’s cancer journey as easy, comfortable, and successful as possible.  We are here to help you, because kids can’t fight cancer alone!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Gold Ribbon Hero Ryley H

“Reason this person is a Gold Ribbon Hero: Ryley’s cousin Regin was diagnosed with Retinoblastoma. He decided one day to stand on the sidewalk outside our house with a sign that said cancer sucks donate. With in an hour he made $100. He loves his cousin and will do any thing for him. Also at one of Regin’s chemo appointments he stood in the middle of the hall with a sign that said “I hope you feel better.” I’m proud of him. He is 8 years old and has more compassion than many people. I love him very much. He makes me proud.
Retinoblastoma is an eye cancer that begins in the retina — the sensitive lining on the inside of your eye. Retinoblastoma most commonly affects young children, but can rarely occur in adults.

Your retina is made up of nerve tissue that senses light as it comes through the front of your eye. The retina sends signals through your optic nerve to your brain, where these signals are interpreted as images.

A rare form of eye cancer, retinoblastoma is the most common form of cancer affecting the eye in children. Retinoblastoma may occur in one or both eyes.” – Dan H.

 

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Gold Ribbon Hero Konnor J

“Reason this person is a Gold Ribbon Hero: Konnor was diagnosed with Stage 3 neuroblastoma at just 3 months old in sept 09. Before his first surgery he went completely paralyzed from the waist down. Through chemo, multiple surgeries and many health issues his strength has never waiver. With the grace of God he took his first steps months after his first birthday and hasn’t slowed down since. He has a smile on his face everyday and makes the most of every day. He has taught me so much about life in his short 6 years.” – Crystal J

 

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Gold Ribbon Hero Vincent B

“Reason this person is a Gold Ribbon Hero: Vincent was diagnosed with Bilateral Retinoblastoma on December 22, 2014 at only 2 months old. He had his Broviac port placed in his chest on December 24, 2014. He has endured 6 cycles of chemotherapy, blood and platelet transfusions and numerous eye exams under anesthesia. Vincent only has peripheral vision in his right eye but full vision in his left eye. As of right now, the tumors are calcified and things are looking up. Vincent will have his next EUA (eye exam under anesthesia) on July 24th and as long as everything looks good, he will also be having surgery to remove his Broviac. Vincent has been through so much at such a young age but he has smiled and remained a happy baby through this whole process. He has a massive support group of family and friends who are behind him 100% of the way. He is the strongest baby I know and he is our hero.” – Megan D.

 

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Gold Ribbon Hero Layla A

“Reason this person is a Gold Ribbon Hero: Layla Alvarez is my warrior granddaughter She is 4 years old and she has been diagnosed with acute lymphocytic leukemia or (ALL).
She is on chemotherapy which makes her feel tired. Sometimes it’s hard for her to walk or stand. She is in the maintenance phase which I have been looking forward to because that means She is going to win this battle . This girl never cries when it’s time for chemo or getting shots. My son and daughter in law are the best,  they work very hard to make sure she gets what Layla needs.
She is my Hero !
“Super Layla” and She is the bravest person . So when I am having a really bad day I just think of my super Layla and all she is going though. I should never say I’m having a bad day again .” – Diane A

 

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