On Treatment

At C.U.R.E. we aim to create an atmosphere of comfort, support, and care. From providing free parking passes to visiting with patients and families who are hospitalized or at the Outpatient Clinic/Treatment Center, C.U.R.E. makes your family our focus.

THE PARENT ADVOCATE PROGRAM

The heart of C.U.R.E. Childhood Cancer Association is 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. Its latest effort, the C.U.R.E. Book Club, provides another way for family members to socialize and to shake off the stress, at least for a little while.

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 our Parent Advocate or other volunteer.

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. 

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.

Parking Passes: C.U.R.E. provides parking passes to help each and every family who is fighting childhood cancer or chronic blood disorder so they never have to worry about parking when visiting their child in the hospital or attending essential appointments. When a child is hospitalized, parents are provided with parking vouchers for as long and as often as their child is an inpatient.

In addition, a parking voucher is provided to parents during each outpatient/clinic visit.

The parking voucher program has been an enormous source of financial relief as hospitalizations can often last a month or longer, creating a huge financial burden for many families. C.U.R.E.’s parking program saves families up to $60,000 annually.

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 the 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.

Educational Assistance

Advances in childhood cancer treatment and therapy have enhanced the long-term survival rate of children that have been diagnosed with cancer.  However, research confirms that various cancers and their therapies often adversely affect a child’s educational development and functioning.

C.U.R.E. helps to coordinate the varied educational needs of students into a cohesive program. This includes working with teachers, guidance counselors and school administrators in order to insure that the special educational needs of cancer patients are met. C.U.R.E.’s goal is to ensure that a child’s educational needs are met both while undergoing treatment and after treatment ends.

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.

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.

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.