Newly Diagnosed

C.U.R.E. Childhood Cancer Association is there for newly diagnosed families. A diagnosis can often come with burdens that aren’t planned for; our programs and staff are here for you every step of the way and help to alleviate your worries.

THE C.U.R.E. PARENT ADVOCATE PROGRAM

The heart of C.U.R.E. Childhood Cancer Association is its THE PARENT ADVOCATE PROGRAM. Certainly, C.U.R.E.’s outreach efforts, fundraising activities, research initiatives, and educational liaison efforts are all crucial to the organization’s mission of helping pediatric cancer and blood disorder patients. It’s the Parent Advocates, however, who are in the trenches, providing support of every stripe to family members as they voyage through treatment and beyond. 

First established in the mid-1980s, THE PARENT ADVOCATE PROGRAM is ever-evolving to address the needs of patients and parents.

If you have a suggestion for an activity or service that you’d like to see offered by THE PARENT ADVOCATE PROGRAM, let us know! Please send suggestions to michelle.magin@curekidscancer.com or speak to any Parent Advocate or other volunteer.

Practical and Financial Help for Newly Diagnosed Families

It’s no secret that the cost of medical care in the United States is exorbitant, even with health insurance. To help offset a fraction of the expense, C.U.R.E. provides each newly diagnosed family with a $100 gas gift card as well as parking passes for both hospital stays and visits to the Pediatric Hematology Oncology Outpatient Clinic and Treatment Center. As long as their child is in treatment, no matter how many times they come and go during a hospital stay, parents will be able to park for free. 

The parking program can save families up to $60,000 annually. What’s more, it means one less worry for parents who are already overwhelmed and stressed.

Other Ways We Help

Comfort Bags: C.U.R.E.’s comfort bags have been described by grateful moms and dads as “a hug in a bag.” Each family receives a large, sturdy tote bag that is chock-full of gifts for the patient, such as a cozy fleece blanket, snuggly stuffed animal, and toys as well as useful supplies, like toiletries for an overnight stay, for parents and other caretakers. In the first few chaotic hours and days after diagnosis, details like remembering to pack a toothbrush often elude parents, making the comfort bags a truly helpful gesture.

Voyage Beads: C.U.R.E. offers an experience for cancer patients with its Voyage Beads Program. 

Part jewelry, part documentation of each step along their journey, C.U.R.E.’s Voyage Beads are a way for patients to mark significant milestones and eventually to see how far they’ve come in their fight against cancer. When they first receive it, a child’s necklace has only beads that spell out their name. Each bead they receive represents a different treatment or procedure: white beads for chemotherapy, red ones for blood transfusions.

The Voyage Bead program proved so popular with patients that in 2018, personalized necklaces and beads were offered to siblings as well. Often, the brothers and sisters of children with cancer can feel left out or left behind, since so much attention is necessarily paid to the patient. Having their own Voyage Beads includes them in the experience and is an acknowledgement of how chronic illness affects all members of the family.

Laundry Hero: We have partnered with local company, Laundry Hero, to help our newly diagnosed Families make their every day lives easier. C.U.R.E. will cover the cost of up to 3 13 gallon bags of laundry per week for Families that are in clinic or radiation 2+ days per week or inpatient 3+ days. Please reach out to our Parent Advocate, Michelle, to learn more.

Emotional and Social Support for Family Members

Parents’ Night Out: When a close family member is undergoing treatment, it can sometimes seem as though your entire existence has been overtaken by Cancer-with-a-capital-C. It’s all you talk about and think about; no matter what else is happening on the surface, cancer continues to beat like a bass line underneath it all. 

Parents’ Night Out provides a respite from this constant, all-consuming subject. Even a few hours away from the hospital can allow a parent the space to breathe and a chance to recharge. Previous outings have included kayaking trips, ice-skating excursions, Red Wings games, haunted hayrides, escape-room experiences, painting parties, and more. Parents can slough off the stress for a little while, share some laughs, and return to their child’s bedside with renewed energy and equilibrium.

Grandparent Connections: C.U.R.E. recognizes that grandparents are more active in the lives of their grandchildren in today’s world. We see the toll a diagnosis takes on the grandparents, who are seeing the affects of these diseases both on their grandchild and their child. Our goal is to create a support network for our Grandparents to ask questions, lean on each other and build a community. Currently, we set up meeting times quarterly for Grandparents to meet and chat and have a morning beverage together. We hope to continue to grow this program.

Agnes K. Mackey Memorial Fund 

Established in 1986, the Agnes K. Mackey Memorial Fund was named to name one of C.U.R.E.’s most ardent supporters. To date, the fund has distributed over $500,000 to families struggling with the financial burden of chronic illness.

In addition to the aforementioned parking passes, as well as meal vouchers distributed to parents of children undergoing inpatient treatment, the Agnes K. Mackey Memorial Fund offers two other types of financial aid.

The Angel Fund, begun by past Board Chair Marc Johnson, extends short-term financial assistance for emergency home repair, utility bills, groceries and household items, and medicine co-pays. Families who are referred by a social worker at Golisano Children’s Hospital can also receive a grant of $500 toward funeral expenses for a pediatric cancer patient who has lost their battle with the disease.

Boost Tutoring Program

One of the many ways cancer takes its toll on young patients is by interfering with their education. C.U.R.E. helps in this area, as well, acting as a liaison between individual families and education professionals at the child’s school. This includes teachers, school administrators, and guidance counselors. Open communication channels help ensure that the patient’s unique educational needs are met, and that he or she does not fall behind in his or her studies while undergoing debilitating treatment like chemotherapy.

C.U.R.E. also offers Boost Tutoring, not just for patients who are currently in treatment, but for the entire duration of a student’s educational career. Volunteers with teaching experience help to “boost” the tutoring services offered by the school itself, or to fill in the gaps that are left when traditional schooling isn’t an option.

Resource Library furnished by the John F. Wegman Fund

C.U.R.E. is home to many books and resources that are free for our families to use. We have books available for families to take home and read, some to keep and some to borrow.

“I can’t imagine going through this without C.U.R.E. The parking passes alone were a tremendous help (I did the math once and the parking cost has been huge) not to mention all the emotional support. We appreciate C.U.R.E. so much, and always will!”

- a C.U.R.E. mom

Resources

American Childhood Cancer Organization – Advocacy organization that provides free books and materials for parents, young patients, siblings, educators, and caregivers.

Cancer Support Community – Social and emotional support supplemental to medical care.

Camp Good Days and Special Times - A Camp with programming for children with cancer or Sickle Cell Anemia and their siblings.

Children’s Oncology Group (COG) ­- National Cancer Institute supports clinical trials devoted exclusively to childhood and adolescent cancer research.

CureSearch – Funds and supports children’s cancer research and provides information and resources.

Leukemia and Lymphoma Society – Funds blood cancer research and provides information and support.

American Cancer Society – Information about diseases, treatment and support.

Livestrong (Lance Armstrong Foundation) – Information and resources for support.

National Cancer Institute -­ Federal Government’s principal agency for cancer research. Information about cancer diagnosis, treatment and continuing care.

Bite Me Cancer – Funds thyroid cancer research and provides information and support. Resources for teens dealing with all cancers as well.

Make a Wish Western & Metro New York – Wish granting organization that services children with life-threatening medical conditions.

CaringBridge – Free personal web site used by many parents to chronicle and communicate their child’s journey.

National Cancer Institute – Comprehensive information on cancer, nation’s leader in cancer research.

Childhood Cancer Guides  – A nonprofit that publishes books to help families of kids with cancer and survivors of childhood cancer.

Colburn – Keenan Foundation, Inc. – A charitable organization that supports students with blood disorders through a designated scholarship program for higher education.

Eating Well During and After Your Cancer Treatment – This information will help you maintain your nutrition during and after your cancer treatment.

Support for College Students with Cancer – The guide includes extensive information, online resources, support organizations, and an ‘insider perspective’ from a young student currently undergoing treatment for cancer.

Don Litzelman Foundation - A resource guide for many cancers, including childhood cancer.

Family Events