Life After Cancer: Tissue Navigator Helps Families Accommodate Donation Wishes
Amy Gillen remembers her son Tanner as a kid who was unfailingly kind. After he was diagnosed with an inoperable brain tumor in the summer of 2018, his entire life was turned upside down – but amazingly, his kind heart remained the same.
“Even when he was sick,” Amy says, “when people asked how he was doing, he would always say, “I can’t complain. How are you?”
During the course of his treatment for cancer at a hospital near their home in Central Illinois, Amy and Tanner talked about the important role that tissue donation played in finding a cure for cancer. “Tanner was no different than any other kid; he believed he could win,” Amy says. “He always said, ‘I’m going to fight this.’ Near the end of his life, it became, ‘I’m going to fight this in another way.’”
Tanner hoped to help other children with cancer by donating his tissue to research to support the search for a cure for pediatric brain tumors.
When he passed away in January 2019 at age 14, his family was referred to Melissa Williams, a tissue navigator at Lurie Children’s whose role is funded by the Swifty Foundation through their Gift from a Child initiative. “Tissue donation was really important to Tanner,” Amy says. “Everyone at Lurie Children’s assured me this was the most precious gift.”
Melissa worked closely with the Gillen family to accommodate Tanner’s wish. As a tissue navigator, Melissa serves as a liaison between families and Lurie Children’s to ensure that tissue donation is a part of the end-of-life process. She also does community outreach to raise awareness of the importance of tissue donation in finding a cure for brain tumors.
“For some cancers, there has not been any progress in maybe 30 years in terms of treatment. In order to make progress, we need tissue,” Melissa says. “This way, we can help people through medical interventions. These research samples may help improve people’s lives or cure diseases down the road. These are important things we can do.”
Tissue samples are sent to the Children’s Brain Tumor Tissue Consortium (CBTTC), a collaborative, multi-institutional research program dedicated to the study and treatment of childhood brain tumors. CBTTC allows researchers from across the world to work together to find cures and consists of 18 primary member institutions, including Lurie Children’s. Angela Waanders, MD, MPH, Director of Precision Medicine Oncology at Lurie Children’s and the current CBTTC Executive Board Chair, had also championed these types of donations prior to joining the Lurie Children’s team this past year.
The Gustafson family founded the Swifty Foundation in honor of their son Michael, who died of a brain tumor at age 15. Like Tanner, Michael was passionate about becoming a tissue donor to help find a cure so that “no other child will have to go through what I did.” The Swifty Foundation launched Gift from a Child, a national post mortem tissue donation program in 2018. CBTTC acts as the operational partner for Gift from a Child.
Lurie Children’s is one of only four Centers of Excellence within the Gift from a Child network. Each Center of Excellence has a Tissue Navigator and in December 2017, the Swifty Foundation funded the role of a tissue navigator at Lurie Children’s to inform families of their options in regard to tissue donation and to manage the logistics to relieve families of the responsibility. “It’s a way for us to help families and honor their child,” Melissa says.
In helping make Tanner’s wish a reality, Melissa forged an unbreakable bond with the Gillens.
“Melissa is our family now,” Amy says. “She tells us where Tanner is now so we know how he is helping in the search for a cure.
“I’m always proud to say Tanner made the choice to donate so another child won’t have to go through this. Certain things help us find life after cancer.”
About Gift from a Child
Gift from a Child’s (GFAC) mission is to increase post-mortem brain tissue donations through advocacy, partnerships and education of families who have just lost a child to brain cancer. Initiated in December 2018, GFAC is supported by families who have lost children to brain cancer, private foundations, researchers and medical professionals. GFAC also has created strategic partnerships with the Children’s Brain Tumor Tissue Consortium (CBTTC), the world’s largest pediatric brain tumor database, and regional medical sites known as centers of excellence. These centers of excellence currently include Ann & Robert H. Lurie Children’s Hospital, Children’s National in Washington, D.C. and Stanford University Medical Center. Each of these centers is responsible for the coordination, processing and storage of donated tissue within their region and has a tissue navigator on site. GFAC is an initiative funded by the Swifty Foundation, a pediatric brain cancer research foundation located in Woodridge, Illinois.
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