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Resources for Children with Cancer
A childhood cancer diagnosis is a life-changing event and can be devastating to families. At Cancer Support Community Southwest Colorado, we understand the difficulties and barriers encountered when receiving cancer treatments at a distance, and we are here for you. We can help locate resources, services, and assistance to allow your family to travel to clinical trials, experimental therapies and treatments that are not currently available in Southwest Colorado.
Resources in Colorado
Children’s Hospital Colorado is one of the best pediatric oncology, hematology, blood, and marrow transplant/cellular therapy programs in the country. They are ranked among the top pediatric hospitals in the nation by U.S. News & World Report. They are also the largest site in the region for Children’s Oncology Group (COG), the largest organization for the research and treatment of childhood cancer in the world.
RMPHO is in Denver and provides comprehensive state-of-the-art pediatric care to children facing childhood cancer and blood disorders. They have a team of specialists that work closely with your child’s other healthcare physicians, and collaborate with Rocky Mountain Hospital for Children, and are members of the Children’s Oncology Group (COG). Learn more about their care and services on their website.
Finding the doctor that is a good fit for your family is one of the most important tasks when facing a childhood cancer diagnosis. Alex’s Lemonade Stand Foundation has partnered with MediFind to help families quickly find physicians with expertise in the specific type of cancer your child is facing.
Brent’s Place is in Aurora, Colorado and provides safe-clean housing for
immunocompromised children and their families while they are being treated for cancer, and for those who have had bone marrow transplants. If you are a patient or family member who believes is a good fit for Brent’s Place, please talk to your hospital social worker about a referral.
Ronald McDonald houses offer accommodations in two locations in the Metro area. It showcases kitchens, laundry facilities, play areas, computer rooms, a patio and TV lounges for families.
Colorado Kids Cancer has accumulated a plethora of organizations that provide resources and assistance for families who have been affected by childhood and young adult cancer. Their goal is to help find resources that are available to families during this challenging time.
The Durango Derailers is a Patient Assistance fund that helps patients, and their families cope with the burden of traveling to and from Children’s Hospital Colorado (CHCO) from Southwest Colorado. This fund is managed from CHCO’s social work departments and can be accessed by families receiving care at CHCO – both the main Anschutz Campus in Aurora (720) 777-6975 and the Colorado Springs Campus at (719) 305-9394. The fund is targeted for people from La Plata, Montezuma, Dolores, San Miguel, San Juan, and Archuleta counties in Colorado.
Understanding the Journey
Provides families with reliable information about treatment, support, and follow-up care for children and young people with cancer. They also publish the New Diagnosis Guide that accompanies the Family Handbook to teach essential content at the time of diagnosis, which also includes the Caring for Your Child at Home slide set. These are available in printable or electronic formats, and are published in English, Spanish, and French languages.
Offers helpful education and resources, such as publications, webinars, after treatment survivorship resources, articles, research, and videos about childhood cancer.
Offers free downloadable comprehensive guides that provide clear explanations of the various types of childhood cancer, accurate information to help cope and understand common childhood cancer diagnoses, descriptions of treatments, and finding resources and emotional support for every member of the family.
Tools to Help Manage Treatment
Alex’s Lemonade Stand Foundation provides a free treatment journal to families of childhood cancer. The journal comes in both English and Spanish translations, and helps caregivers stay organized by keeping track of medications, appointments, symptoms, side effects, blood counts, scans, diagnostic test, transfusions, expenses, nutrition and more. If you are in Southwest Colorado, contact our cancer nurse navigator at Cancer Support Community Southwest Colorado to pick up a free treatment journal for your family firstname.lastname@example.org.
CureSearch has an app to make caring for children with cancer easier. Once you have downloaded the app, you will be able to organize treatment dates, and medication schedules, synchronize it with your phone’s calendar, track side effects, blood counts, view reports and see trends, and access Cancer Care Resources from the app.
Find Someone Who Understands
This Facebook support group provides a compassionate and supportive environment for parents, guardians, caregivers, and survivors of childhood cancer. It’s a place to connect, offer and receive support and encouragement and to share tips and resources.
Helps alleviate the feelings of separation and isolation that affects the families experiencing childhood cancer. They provide positive and restorative environment of online peer social support for caregivers of children who have been diagnosed with cancer.
Share support, advice, and information about childhood cancer, including diagnosis, treatment, family support, siblings, surgery, and long-term effects.
The ACCO offers a comprehensive list of resources, tools, support networks and specialized programs to help you and your family cope with the medical, emotional, and psychological issues a childhood cancer can bring. They offer programs that encourage interaction with others who understand what you are going through.
Because childhood cancer affects the whole family, not only the child who receives the diagnosis, SuperSibs is dedicated to comforting, encouraging, and empowering siblings during their family’s journey with childhood cancer so they can face the future with courage and hope.
CureSearch researchers spoke with a group of parents who have been through the childhood cancer experience and asked them what types of support helped them the most. These were their suggestions; if you are having trouble pinpointing your family’s needs, this may help.
Private Website, Helping Calendar, and Support
Create a private website to keep your friends and family informed and involved in your child’s journey and care, join discussion boards to find support and information, or find local support groups near you. They also provide a helping calendar to coordinate a community of volunteers to help meet the family’s needs. Cancer Support Community also has a Helpline that is fully staffed by mental health professionals. 888-753-9355
Managing the Cost of Care
This guide, written by the Patient Advocate Foundation (PAF), who advocates for families facing a threatening illness. They understand that the more informed we are the more capable we are to make decisions that can impact our young people’s healthcare. This guide is meant to provide the necessary tools to anticipate the steps you need to take to make your family’s healthcare journey less problem free.
For other resources, look at Cancer Support Community Southwest Colorado’s Pinterest Board “Precious Little People with Cancer”