Children fighting cancer too frequently find themselves isolated from friends, missing school, and struggling with a way to process their diagnosis. CCF remains committed to funding programs that ensure the needs of the patient are met socially, educationally and therapeutically. CCF is proud to have partnered with remarkable local programs over the years who understand the unique needs of the cancer fighter and their family.
Shirley’s Kids Respite Weekend with The Children’s Inn at NIH
Before our founder Shirley Howard passed away in 2013, she designated dollars to annually support a special weekend for families staying at The Children’s Inn. The Children’s Inn offers a welcoming residence for families free of charge who have a child with a severe illness or disorder seeking treatment at the National Institutes of Health.
Fondly named “Shirley’s Kids Respite Weekend,” the weekend provides an opportunity for a small group of Inn families to focus on an off-site adventure, enabling them to forget about treatment for a weekend and bond as a family. Since the first weekend in 2014, families have stayed in nearby locations such as Baltimore, Old Town Alexandria, and National Harbor, enjoyed group meals, and many activities including aquarium visits, canoeing, mini-golf, shopping, and pirate-themed boat tours.
We are grateful to The Children’s Inn for coordinating the trips and for local Giant Food stores that reliably begins the trip welcoming the families with goody bags filled with drinks and snacks for their adventure.
Pediatric Hematology/Oncology Adolescent and Young Adult (AYA) Support Groups at The Herman & Walter Samuelson Children’s Hospital at Sinai
Psychosocial support has been shown to contribute to healing. This program, launched in 2019, and funded exclusively by CCF, organizes monthly activities for adolescents undergoing, or recently completed, cancer treatments at Sinai. The art therapists and child life specialists, overseen by the director of Pediatric Hematology/Oncology Aziza Shad, M.D., facilitate these outings that “provide…a sense of normalcy while feeling comfortable that they are in an environment that is safe and aware of their extended needs. Many who participate in our group live in the city of Baltimore and our outings provide some of the only opportunities in which they are able to have experiences outside of school and home life. They often feel isolated not only by their living situation but because of their unique medical difficulties… By coming to these outings, they are able to connect with others who are dealing with similar situations… The bonds formed through these outings are ones that will last a lifetime and have made a positive change for each and every patient who has participated.” 2023 outings included a sushi-making class, laser tag, candle making, and bowling.
Hospital Educational Liaison Program at the Kennedy Krieger Institute
It is widely known in the pediatric cancer community that many cancer treatments lead to cognitive impacts, including difficulty sustaining attention, behavioral challenges, learning delays, hearing loss and processing disorders. When parents are considering treatment to save the child’s life, the side effects of cognitive impacts become secondary. However, when the child is ready to transition to in-person learning in a traditional classroom, communication between the child and the school often does not include details that could be critical to successful learning.
CCF is proud to fund the Hospital Education Liaison Program (HELP), which provides families a Special Education and Instructional Technology Specialist, who serves as a liaison between the child’s family, the medical team and their school, to ensure there is communication and appropriate support for the childhood cancer patient or survivor. Cancer patients who live in Maryland and are referred by a local hospital are eligible for this support. Lisa Carey, Ph.D. took on this role to ensure that the child’s medical condition is known to their school, that the parent understands available services and how to access them, and likewise, that the medical team is aware of the child’s needs and behaviors taking place at school.
Arnitra Smith, mother of leukemia survivor Nigel Bannister, launched Nigel’s Neighborhood to provide normalcy for the sickest of children by offering them a prom experience. She recognized the importance of lifting cancer patients up during an otherwise brutally challenging time. The first prom hosted young patients from the area in 2017. The pandemic required a virtual event in 2020 and 2021, but in November 2022, dozens of young fighters and survivors were invited to the National Aquarium in Baltimore for a lively celebration, attended by Nigel himself, now in his early 20s. These events are free for all who attend, and Nigel’s Neighborhood is run exclusively by volunteers.
For many years, CCF’s Magic Castle Program at the University of Maryland Pediatric Oncology Division has provided encouragement and rewards to brave young patients facing long, painful and exhausting treatments. The program and its scale-model castle moved in 2016 when the Maryland Proton Treatment Center (MPTC) opened, currently offering therapy to approximately 50 children each year.
At the start of treatment, each young patient is asked to write three wishes on a slip of paper and place it inside the Magic Castle, located in the MPTC lobby. The child is then told that on the final day of treatment, after ringing the bell, there is a celebration with family and staff as they receive one of their wishes, or several, based around a theme to mark their bravery and perseverance. In addition to the ever-popular tech devices, there have been zoo memberships, a shopping spree, a VIP visit to a Nationals game, a Trolls party for all of her stuffed animals, a bedroom makeover, and cooking classes.
