Patient Resources
Wellness and Survivorship Program
The Childhood, Adolescent and Young Adult Wellness and Survivorship Program at the Maria Fareri Children’s Hospital at Westchester Medical Center and New York Medical College consists of a multidisciplinary team focused on recognizing and managing potential late effects that can occur as a consequence after treatment for childhood cancers or following stem cell transplant.
The program is focused on educating survivors regarding their long-term health risks and addressing these needs by providing comprehensive medical and psychosocial care. The Wellness and Survivorship Program has the ability to utilize our experience with this unique patient population to develop and implement various clinical research projects that will contribute to the field of long-term survivorship. Overall, the program is equipped to design and deliver customized and personalized therapy for each long-term survivor.
Services we provide
- monitoring for and managing physical late effects
- health education to survivors regarding their diagnoses, treatment exposures and potential late effects
- referrals to specialists and resources as indicated
- encouraging activities that promote wellness and health
- addressing psychosocial needs of survivors and thier family members
- assessing and providing intervention for educational or vocational needs
- assisting with financial and insurance issues
- guiding transition from pediatric to adult-focused health care
- empowering survivors to advocate for their own health care needs
- facilitating survivorship research
Key team members
The core team includes a pediatric oncologist, nurse coordinator, social worker, data manager and clinical research associate. Surrounding the core survivorship team will be a group of physician specialists familiar with evaluating problems in childhood cancer survivors. These specialties include radiation oncology, cardiology, pulmonology, orthopedics, neurology, endocrinology, urology, audiology/ENT, nephrology, gastroenterology, nutrition, dental and psychology.
Unique program features
Our program provides several key components:
- longitudinal care utilizing a comprehensive multidisciplinary team approach
- continuity, with a single healthcare provider coordinating needed services
- an emphasis on the whole person, with sensitivity to the cancer experience and its affect on the entire family
- academic setting to allow for establishment of a specialized follow-up team to care for large numbers of survivors
- targeted individualized studies to evaluate organ function and monitor for late effects based on the survivor’s treatment history
- comprehensive psychosocial evaluation, guidance, and vocational assistance
Social work services
Our social workers play a vital, valuable and unique role in assessing and implementing interventions that help patients and their families cope during the diagnostic and treatment period and, often, beyond. They provide individual and family counseling, education, and information and referrals to community resources.
Both are licensed clinical social workers. They offer their services on an inpatient and outpatient basis affording the patient and his or her family to have a consistent presence throughout their illness and recovery.
When a child is hospitalized, our social workers collaborate with the Child-Life and Creative Arts Therapy Program to provide well-rounded care designed to help patients and their families ease their burdens and increase their coping abilities.
Assessment is ongoing to address the various needs of the patient and family. Active, empathetic listening along with information sharing and appropriate problem-solving skills on the part of the social worker can helps alleviate the stress patients may experiences at their loss of control, fear of the hospital environment, relapses, fear of dying, body image issues, low self esteem and issues related to reintegration into the real-world. Engaging patients and families in this practice is part of the healing process.
Empowering those diagnosed during the difficult times they face encourages the resilient spirit of those served. To that end, our social workers help patients and families improve their quality of life, cope with their fears and feel supported. Our social workers have knowledge and expertise in the social service system, employing their skills to provide information on matters related to insurance and referrals to agencies and programs that can provide financial assistance. Psychological services are assessed and addressed to assure the patient’s overall well-being.
Education is key to helping young people keep a sense of normalcy. Our social workers make appropriate referrals for patients to continue their studies while in the hospital or at home.
Support for adolescents and young adults
Adolescents and young adults face challenges that are unique to their age group. Providing support and education are key elements of the role the social workers provide. The social workers provide information and resources that will prepare them for their journey through treatment and beyond.
While their peers are preparing for college and joining the workforce, the newly diagnosed adolescent/young adult must cope with the losses of what they viewed as normal. Our social workers can help by providing counseling, offering hope and helping them create a “new normal.”
Issues facing this population are fertility, schooling, and peer relationships to name a few. Helping the patient be proactive in their health care is empowering and encourages the development of resilience to face the days ahead. Social workers assist the patient and their families to navigate through the resources available to them.
Siblings Program
The Social Work Department and Child-Life and Expressive Arts Therapy Program collaborate to provide a program for siblings (ages 5 and older) three times a year. This is a therapeutic program that addresses the needs and feelings of siblings in a fun, safe environment. Watch for a flyer at the infusion center or an invitation from your social worker.
Pediatric Oncology Integrative Medicine Program
Coping with a life-threatening or chronic illness has a powerful impact on a child and their family. Even extended family members and friends are affected. It is the goal of our healthcare staff to assist you through this difficult time.
Through a generous grant from the Pediatric Cancer Foundation we are currently providing the following complimentary services to our inpatient patients and their families.
Massage therapy
Massage therapy is the manipulation of the soft tissues of the body for the purpose of normalizing those tissues. This therapy can reduce muscle tension and stiffness, relieve muscle spasms, increase flexibility and range of motion, relieve stress, improve blood circulation, increase feelings of well-being and reduce anxiety.
Reiki
Reiki is an ancient practice of healing that uses a hands-on approach to moving and aligning energy fields. The hands are placed in different areas of the body for a period of three to four minutes per hand placement, offering a deep sense of nurturing, peace and presence, as well as profound relaxation. Meditative music accompanies both healing interventions to complete the circle of care for both massage and Reiki.
Guided imagery
Guided imagery is used to distract the patient or family member from feelings of fear, distress and discomfort. Creating an atmosphere of total relaxation, the patient or family member is taught deep meditative breathing and relaxation techniques.
Camps
Please speak to your social worker for help with your child’s camp application or for further details.
Camp Adventure
American Cancer Society, 75 Davids Dr., Hauppauge, NY 11788
800-ACS-2345
For children ages 6-18 in treatment or in remission.
Camp Good Days & Special Times
1332 Pittsford-Mendon Rd., Mendon, NY 14506
800-785-2135
For children of all ages in treatment or in remission.
Camp Simcha
151 West 30th St., New York, NY 10001
212-699-6661
A camp for children and young adults ages 6-21 of Jewish faith, in treatment or remission. Also offers many other support services.
Camp Sunshine
35 Acadia Rd., Casco, ME 04015
207-655-3800
All ages. A unique program offering year-round programs for children with life-threatening illnesses and their immediate families.
The Hole in the Wall Gang Camp
565 Ashford Center Road, Ashford, CT 06278
860-429-3444
Year-round center serving children and their families coping with cancer, sickle cell anemia and other serious illnesses.
Double H Ranch
97 Hidden Valley Rd., Lake Luzerne, NY 12846
518-696-5676
Ages 6-16. Camp and year-round activities.
Happiness Is Camping
2169 Grand Concourse, Bronx, NY 19453
718-295-3100
Ages 6-14. A traditional sleep-away camp for kids with cancer located in Blairstown, NJ.
Sunrise Day Camp
Pearl River, 600 Bear Ridge Road, Pleasantville, NY 10570
914-741-0333
Ages 3-16. Day camp for children with cancer and their siblings. Transportation can possibly be arranged if needed.
College resources
Collegiate Cancer
Provides services and support to young adults ages 18 to 35 to encourage pursuing higher education.
National Grace Foundation
Provides free college admissions and financial aid counseling to high school and college-aged young adults.
Disease-specific resources
Leukemia and Lymphoma Society
Westchester Chapter
1311 Mamaroneck Ave. Ste. 330
White Plains, NY 10605
914-949-0084
Contact: Denise Raptoulis
Upstate New York/Vermont Chapter
6 Automation Lane
Albany, NY 12205
518-438-3583
Contact: Rachel Hunt or Susan Koberel
NYC Chapter
475 Park Avenue S., 21st Floor
New York, NY 10016
212-448-9206 ext. 259
Contact: Shirley Moy
Fairfield County Chapter
25 3rd St., 4th Floor
Stanford, CT 06905
203-967-8326
Contact: Phyllis Osterman
Provides educational materials, copay assistance program for certain blood cancers, referrals to other support services, and materials for schools and teachers.
Children’s Brain Tumor Foundation
274 Madison Avenue, Suite 301, New York, NY 10016
212-448-9494
Their mission is to improve the treatment, quality of life and long-term outlook for children with brain and spinal cord tumors through research, support, education and advocacy to families and survivors.
Brain Tumor Foundation
Provides resources, support, education and advocacy for adults and children and their families.
Children’s Neuroblastoma Cancer Foundation
360 W. Schick Rd. Suite 23 #211, Bloomingdale, IL 60108
866-671-2623
info@cncf-childcancer.org
Dedicated to fundraising, support, research and advocacy for children with neuroblastoma and their families. Parent-to-parent information network and sponsors of a conference for parents and professionals every odd numbered year.
Retinoblastoma
Dedicated to advancing health care through molecular diagnostic tests.
www.daisyfund.org
A resource for parents and medical providers. Provides education, emotional support and concrete referrals for children and their family
Dani’s Foundation
Contact: Martha Simmons, executive director
martha@danisfoundation.org
1600 Broadway, Suite 2400, Denver, CO 80202
303-601-1881
The Dani’s Foundation patient assistance grant program will provide once per year financial payment (up to $500/patient/year) paid directly to the patient’s vendor.
Sarcoma Foundation of America
Provides a variety of information on all sarcomas.
Head and body gear
//www.hatswithhair.com
877-477-4287
A comfortable wig-alternative headwear.
Bandanas
Large selection of bandanas, skull caps and other head wear.
Sammies Tops
A shirt devised by a grandmother to hold the tubes of a Hickman catheter.
Helpful links and resources
www.curesearch.org
A comprehensive site for childhood cancer. A joint effort between COG (Children’s Oncology Group) and CCF (National Children’s Cancer Foundation) to provide information and promote research.
www.beyondthecure.org
Site for survivorship issues.
National Cancer Institute (NCI)
The National Institutes of Health’s comprehensive cancer website.
www.cookforyourlife.org
Website dedicated to helping patients and families create healthier meals during and after treatment.
American Cancer Society
800-ACS-2345
Can provide the telephone number of the local ACS office serving your area: provides general information related to cancer and may include reimbursement for transportation, medicine and medical supplies. Summer camp for children ages 6-19.
American Childhood Cancer Organization
Free resources (books and DVDs). Orders can be made directly from the website.
Believe In Tomorrow
6601 Frederick Road, Baltimore, MD 21228
800-933-5470
A national, non-profit organization with unique programs that provide support to children and their families facing cancer. The program most used by our families is the Retreat Housing program. This program offers a vacation, free of charge, in four locations; Ocean City, Maryland; Fenwick Island, Delaware; Deep Creek Lake, Maryland; and Sedona, Arizona.
Brittany Miller Foundation
P.O. Box 3047, Middletown, N.Y. 10940
845-344-3946
Provides financial assistance (transportation and food), information and support to children diagnosed with cancer and their families in Orange, Ulster, Dutchess, and Sullivan counties in New York and Pike County, Pennsylvania.
Cancer Care, Inc.
275 7th Ave., NYC 10001
800-813-HOPE
A national non-profit agency offering a range of support services including counseling to cancer patients and their families, financial assistance and transportation.
Cancer Support Team (CST)
875 Mamoroneck Avenue, Suite 204, Mamaroneck, NY 10543
914-777-2777
Providers of professional services for people with cancer and those who care for them. CST covers the lower- to mid-Westchester County area up to White Plains. Call for list of services and support.
Children’s Cancer Recovery Foundation
Provides a variety of supports for patients and families coping with childhood cancer. Must be under age 18.
Friends of Karen
118 Titicus Road, P.O. Box 190, Purdys, NY 10578-0190
914-277-4547 or 800-637-2774
For initial referral: 212-308-1378, ext. 3
Provides comprehensive financial, emotional and advocacy support to children up to age 21 with terminal and life-threatening illnesses and their families.
Giant Kids
An organization started by one of our patient’s families. The mission is to recognize the heroics of children battling life-threatening diseases and their siblings and caregivers through an award program. The program provides activities and events for patients and their siblings designed to enrich their lives during and following medical treatments and raises money for research programs focused on curing pediatric cancer and related blood diseases. The organization sponsors and organizes an annual, free family fun day at Camp Kiwi in Mahopac, NY, on the last Saturday of July. Check with your social worker for exact date.
Gilda’s Club
80 Maple Ave., White Plains, NY 10601-5105
914-644-8844
A free cancer-support community offering a wide range of therapeutic activities and educational programs, including Noogieland, a magical space with fun activities and support for children. Also provides support groups for parents of children with cancer or cancer in the family.
Hudson Valley Cancer Resource Center
Provides educational information and resources specific to the Hudson Valley.
National Children’s Cancer Society (NCCS)
500 N. Broadway, Suite 800, St. Louis, MO 63102
314-241-1600
A financial, emotional and educational resource for families who have children with cancer. Support provided through their Family Support Program (on-line community), Transportation Assistance Fund and Emergency Assistance Fund ($200 per year/per family).
Ronald McDonald House of the Greater Hudson Valley
A home-away-from-home for families throughout the Hudson Valley region and beyond, providing the ability for families to stay together. We provide our families with a low-cost, safe and comfortable home-like setting with the convenience of being steps away from the hospital.
Songs of Love
A non-profit organization that creates personalized songs on CD or cassette for hospitalized and homebound children.
Social Security Disability
800-772-1213
SSI/ SSD is a government program that pays monthly benefits children can qualify for if they meet Social Security’s definition of disability and if the family income and assets fall within the eligibility limits. Young adults over 18 may apply and not have parents’ income considered.
Team Impact
617-801-0248
Mission is to improve the quality of life for children facing life-threatening and chronic illnesses through the power of team. Courageous kids are matched with local college athletic teams. Team Impact children are drafted onto the team and become an official member of the team from Draft Day through to Graduation. The child joins the athletic team and the student athletes join the child’s support team. The child gains great strength, camaraderie and support and the student athletes are taught lessons about courage and resiliency. Referrals are accepted on line either by medical providers or the family.
Super Sibs
To honor, support and recognize brothers and sisters of children with cancer. Now has merged with Alex’s Lemonade Stand. They fund research projects, a travel program and develop resources.
Young adult resources
The Brenda Mehling Cancer Fund
818-737-1866
Supports patients ages 18-40 undergoing cancer treatment. Provides financial assistance with daily needs not covered by insurance.
The SAMFund
89 South Street, Suite LL02, Boston, MA 02111
617-938-3484
info@thesamfund.org
A non-profit organization designed to help young adults ages 17-39 recover from the financial impact of cancer treatment. They provide financial, legal and work assistance.
Allyson Whitney Foundation, Inc.
P.O. Box 586, Rock Hill, NY 12775
grants@allysonwhitney.org
Advocates for the interests of young adults with rare cancers. Their mission is to improve quality of life and provide emotional support. Financial grants are awarded for young adults ages 15-35 who are undergoing treatment and are residents or citizen of the U.S.
This Star Won’t Go Out
118 Billings Street, Quincy MA 02171
Provides financial assistance for patients up to age 26 in the form of a grant of up to $2000, usually for rent, mortgage or other urgent bill. Wait list is two to three months. Foundation was started on proceeds Esther’s Book.