No one can ever be prepared to hear that their child has been diagnosed with cancer. After accepting the news, there will be many questions-from clinical trials and financial aid information, to support groups. Below are some resources to help. Please check back frequently as our site is updated often.
This free downloadable guide from the National Cancer Institute aims to give parents practical support that can help you and a doctor speak with your child, organize medical and insurance information, and learn about additional resources. It also includes information about specific types of childhood cancer, tests and procedures, treatments and clinical trials, health issues during treatment, steps to take if treatment isn’t working, and survivorship.
The American Childhood Cancer Organization is one of the nation’s largest grassroots organizations at the forefront of the crucial battle against childhood cancer. They are dedicated to improving the lives of children living with childhood cancer, its long-term impacts, and to offer critical advice, support, and assistance to families engaged in this life-altering struggle. Here you can order FREE books for your child and family.
Why Me offers a comprehensive approach to supporting the entire family through a pediatric cancer diagnosis from support groups, to financial support, as well as staff visits. Whether at home, hospital or clinic, families receive support to address the specific ways their families’ lives have been disrupted. All services are free of charge.
Developed by the National Institutes of Health / National Cancer Institute, with input from parents who have a child with cancer and health care providers, A Handbook for Parents aims to help prepare for, and cope during the days ahead. Download this free PDF.
A cancer diagnosis is upsetting at any age, but especially so when the patient is a child. It’s natural to have many questions, such as, Who should treat my child? Will my child get well? What does all of this mean for our family? Not all questions have answers, but the information and resources on this page provide a starting point for understanding the basics of childhood cancer, such as: Treating Childhood Cancer, Coping with Cancer, Clinical Trials, Types of Cancer in Children, Cancer Causes, and Research.
PDQ (Physician Data Query) is NCI’s comprehensive source of cancer information. Cancer Information Summaries: Pediatric Treatment contains cancer information summaries on a wide range of cancer topics; drug information summaries on many cancer-related drugs and drug combinations; and dictionaries of general cancer terms, drug terms, and genetics terms. PDQ also contains a searchable listing of cancer clinical trials from around the world and a directory of professionals who provide genetics services.
A Parent’s Guide to Clinical Trials: by Adam Cohen MS, MD & Howard Colman MD, PhD, Is a concise reference guide which explains what clinical trials are. It defines in easy to understand langauage, a clincal trial’s process and structure. Click Here to view the Clinical Trials E-Book.
Clinical trials are research studies that involve people. Understanding more can help you decide if a clinical trial might be an option for your child. The NIH has provided basic information about clinical trials to help you understand what’s involved in taking part. This includes information about the benefits and risks, who is responsible for which research costs, and how your safety is protected. They have also included a tool to help you search for clinical trials. Learning all you can about clinical trials can help you talk with doctor and make a decision that is right for you.
Dana-Farber / Boston Children’s are currently involved in more than 100 clinical trials – many of which are not available anywhere else. Clinical trials can provide children with rare or hard-to-treat conditions access to innovative treatments that may help where traditional options fail. Learn more about participating in pediatric clinical trials.
Many Dana-Farber/Boston Children’s investigators assume leadership roles in national cooperative research groups investigating new, or phase I, approaches for treating all forms of childhood cancer. Dana-Farber/Boston Children’s is the only pediatric program in New England that offers access to many of these phase I studies. The cooperative research groups that Dana-Farber Cancer Institute and Boston Children’s Hospital physicians, (and in some cases, nurses, pharmacists and research coordinators) contribute to include:
Dana-Farber ALL Consortium
The Dana-Farber ALL Consortium brings together eight institutions in the United States and Canada to work together to develop and oversee medical studies for children with Acute Lymphoblastic Leukemia (ALL), with the goal of improving survival while minimizing toxicity.
Pediatric Clinical Trials at Dana-Farber Cancer Institute
Children’s Oncology Group (COG) COG is a collaborative research organization comprised of doctors, nurses, pharmacists and research coordinators dedicated to improving the treatment of childhood cancers. Dana-Farber/Boston Children’s is one of only 20 institutions nationwide conducting COG phase I clinical trials. On their Curesearch.org website, COG offers information for patients and families regarding cancer diagnosis, treatment, supportive care, and after treatment.
Pediatric Brain Tumor Consortium (PBTC) The PBTC is a multidisciplinary cooperative research organization devoted to the study of correlative tumor biology and new therapies for primary CNS tumors of childhood. Dana-Farber/Boston Children’s was selected as one of the original nine member institutions because of its extensive experience with pediatric brain tumor clinical trials and its depth of the laboratory and imaging capabilities.
New Approaches to Neuroblastoma Therapy (NANT) NANT is a group of 14 universities and Children’s Hospitals with strong research and treatment programs for neuroblastoma that tests promising new therapies for high-risk and relapsed neuroblastoma. The group is supported and funded by the National Cancer Institute.
Clinical trials are essential for moving new methods of preventing, diagnosing, and treating cancer. NCI has a broad array of programs including programs from the initial creation of candidate drugs in the lab to final testing in late-stage clinical trials. Read more about NCI’s clinical trials programs and initiatives
The Coalition of Cancer Cooperative Groups is a unique nonprofit organization with one mission, improving patient awareness of cancer clinical trials, facilitating access, and promoting participation. Through innovative programs and services, the Coalition examines and confronts key issues impeding cancer research.
Stand Up To Cancer has provided this resource for you to register with the Clinical Trials Finder, a free and confidential cancer clinical trial matching and referral service operated by EmergingMed. Clinical Trial Navigators are available to guide you through the search process AND notify you know when new studies open that match a specific profile.
Pediatric cancer treatment can affect fertility. For many patients receiving cancer treatment, decrease or loss of reproductive function is temporary, but some patients do not regain this function. Before the start of patient therapy, thought must be given to whether a child’s fertility is likely to be impacted by treatment. Pediatric Fertility Preservation Program Information.
Dealing with the diagnosis of a serious illness in a child is difficult for the entire family. It is important that your child, your family, and you get the support and care you need during this hard time. Palliative care is a key part of care for children living with a serious illness. It is also an important source of support for their families. The National Institute of Nursing Research has put together this information.
Download this free pamphlet from the American Cancer Society:
Improving your Child’s Quality of Life through Pediatric Palliative Care
HOUSING DURING TREATMENT
AstraZeneca Hope Lodge Center in the Jamaica Plain neighborhood of Boston, just minutes from the city’s world-class medical institutions. This state-of-the-art facility serves as a “home away from home” for patients traveling more than 40 miles to their outpatient treatments. There is no charge to stay at Hope Lodge, for either the patient or his or her caregivers
The Ronald McDonald House at Boston Harbor (formerly Home Away Boston), where families of critically ill children can stay to be close to their child who is receiving treatment in Boston. Each year hundreds of families travel to Boston from locations all over the world to give their child access to the world’s best medical care. In doing so, they face enormous hurdles such as navigating the complexities of the health care system, extraordinarily high local housing costs, and excessive emotional and physical stress. At the Ronald McDonald House at Boston Harbor, we remove the stress of daily living and support families to enable them to focus on what really matters: their child’s health and healing. Click HERE to find out if you qualify to stay at Ronald McDonald House at Boston Harbor and to fill out the Request to Stay form.
Courageous Parents Network provides parents and families of children (ages 0-18) living with serious illness with expert guidance and virtual community to promote coping and resiliency and to lessen the isolation they experience.
Siblings of cancer patients often face fear, anxiety, changes in daily routines, worry, grief and even jealousy as their family is thrown into the emotional turmoil of managing a child’s cancer treatment. SuperSibs is dedicated to comforting, encouraging, and empowering siblings during their family’s battle against childhood cancer.
Mommies of Miracles is the world’s largest virtual support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities.
Alex’s Lemonade Stand is dedicated to raising money and awareness of childhood cancer causes, primarily research into new treatments and cures. The foundation is also passionate about encouraging and empowering others, especially children, to get involved and make a difference for children with cancer.
FREE INTEGRATIVE THERAPIES
The mission of Lucy’s Love Bus is to improve quality of life for children with cancer and life-threatening illness, to support their families, and to mobilize the next generation of cancer activists. The home of Lucy’s Love Bus, The Sajni Center in Amesbury, offers programs and support groups for children with cancer or life-threatening illness and their immediate family members (siblings and parents/legal guardians). Individual funding is also available for children with cancer to receive individual integrative therapies at home, hospital, or hospice. For more information, please visit lucyslovebus.org.
Andrew’s Helping Hands helps families going through Bone Marrow Transplant. They allow parents to focus on their child during recovery. The process of going through a Bone Marrow Transplant has many facades. If a donor is needed,they help organize a Bone Marrow Drive. If finances are needed, they help with fundraisers, benefits, raffles, etc. If you just need a helping hand, give them a call at 508-380-1797 because whatever you need during this period, they are there to be helpful.
One Mission allocates funding to programs and services that directly benefit children with cancer, their families, and the medical community who compassionately cares for them. Every grant we issue targets a specific initiative that has met our funding criteria and supports our mission. The majority of the programs, services and research initiatives we sponsor rely exclusively on philanthropic support as they are not reimbursable through insurance or eligible for traditional grant funding.
Your child and caregiver may be entitled to federal, state, or local funding support. Here are some agencies to explore: Federal, State, Local and Private Funding
As families try to cope with years of cancer treatment, out-of-pocket medical expenses and everyday living costs, they often reach critical breaking points. Through an effective process developed through years of close collaboration with hospital social workers, Family Reach provides urgent financial assistance to families in a timely, compassionate fashion. Family Reach is a lifeline for families fighting cancer nationwide.
This Star Won’t Go Out is making a difference in the lives of children with cancer, one family at a time. By providing funds to help pay for travel, a mortgage or rent check, and other cost of living expenses, TSWGO frees up families to focus on their child who is in treatment. A gift of money is really a gift towards quality time as a family—and that’s a gift that is beyond value.
Endure to Cure’s goal is to be a source of hope, joy, and excitement for the 45,000+ brave kids fighting cancer and their family members. We fulfill this objective by providing kid-centered gifts, or by providing a helping hand to their families to keep their spirits up and hope alive.
CAMPS IN NEW ENGLAND
The Hole in the Wall Gang Camp is dedicated to providing “a different kind of healing” to seriously ill children and their families throughout the Northeast, free of charge. It’s a community that celebrates the fun, friendship and spirit of childhood, where every kid can “raise a little hell.”
Dream Day on Cape Cod is a non-profit organization based in Brewster, Massachusetts, dedicated to bringing respite into the lives of children with serious and/or life-threatening illnesses and their families. For 25 years, Dream Day has helped hundreds of these families disconnect from the daily struggles of hospital and doctors’ visits and round-the clock care to reconnect with one another and to connect with others who understand and accept what they have been going through at its Camp Nan-Ke-Rafe, a 17-acre facility located adjacent to Nickerson State Park.
Camp Casco is a one-week summer camp experience in Massachusetts for children with cancer that aims to restore the fun of summer with traditional camp activities, free of cost. Experienced camp counselors and professional medical staff support and encourage campers to rise above their diagnosis, shedding their insecurities and building lifelong friendships with peers who share their struggles with cancer. Eligible campers are childhood cancer patients or survivors between 7 – 17 years of age upon arriving at camp.
On Belay builds community among youth ages 8-18 who have, or have had a family member with cancer, using adventure based programs that encourage participants to uncover their inner resilience. Among On Belay kids, are children who have lost someone, who have someone in treatment, and who have a loved one in remission. Through the support of being “On Belay,” the camp gives participants a chance to connect with other children facing similar challenges while learning to support others, ask for help, and develop confidence.
The mission of Our Space is to embrace children, teens and their families, who are facing cancer and other serious related chronic illnesses. Our space aims to inspire healing, peace, and joy, through creative exploration, play and connection to others. Inquire about Home Visits. Our Space collaborates with: Boston Children’s Hospital; Massachusetts General Hospital; Floating Hospital For Children; Jimmy Fund Clinic at Dana Farber Cancer Institute; Christopher’s Haven; Spaulding Rehabilitation Hospital; Boston Medical Center, and Home Away Boston.
Camp Kesem is a nationwide community, driven by passionate college student leaders, supporting children through and beyond their parent’s cancer. There are two locations based out of Massachusetts: Camp Kesem Chestnut Hill, and Camp Kesem MIT. Actual camp locations vary. With 1.7 million cancer cases a year in the United States, there are more than 3 million kids affected by a parent’s cancer and Camp Kesem recognizes and embraces this often-overlooked population of children. Because they don’t appear sick, their needs are often over looked and they suffer quietly.