Gina Altieri is a survivor in every sense of the word. In 2012 her world was tragically rocked when her 10-year-old son, Gino, died after a 22-month journey fighting alveolar rhabdomyosarcoma, a cancer made up of cells that normally develop into skeletal muscles. After taking time to grieve, Gina was looking for a way to volunteer at the hospital and make a difference for patients and families going through what she had.
“Akron Children’s became a second home and family to me and I missed that,” she said.
In 2015, Gina received a call from Dr. Jeffrey Hord, director of Showers Family Center for Childhood Cancer & Blood Disorders, (who had been Gino’s doctor and had also become a close family friend) asking if she would be interested in a newly created position in the department.
“The patient navigator position was created to help identify barriers to care and to work with the hospital’s Cancer Committee to develop ways to break down those barriers,” Gina said.
But, Gina admits, the position has grown far beyond that scope and for that she credits Dr. Hord.
“This position could have been added to a social worker’s workload or added to a nurse’s scope of work, but Dr. Hord saw the value in having a parent who has been through the cancer process fill this role,” she said. “As the first and only department with a patient navigator I’m developing a program that didn’t exist so I’m learning through trial and error.”
Gina’s main focus has been prioritizing where she sees the most need.
“The first thing I do is go in and introduce myself to every patient family within their first 2 weeks of treatment,” she said. “I talk to the parents and patients, lend an ear of support, play with the kids and set up expressive therapy appointments.”
One area Gina is especially good at is sharing personal tips that helped her through her journey with Gino.
“I tell families there are no silly questions, to ask what’s on their mind, to keep a journal and write things down, and to ask for the resources they need,” she said. “I can request printed materials from the family resource library on diagnoses, treatments, med ports and nutrition. We have a teacher who can assist with school needs as well as an outreach educator for re-entry issues. A social worker is also available to help arrange for transportation or cafeteria vouchers. Part of my job is identifying what our families need and helping remove barriers to those needs.”
One of Gina’s favorite Akron Children’s resources is the Expressive Therapy Center. She coordinates outpatient bedside therapy for patients including arts, crafts, painting, clay molding and music. She’s also been known to break out her competitive side and play board games with patients.
“Sometimes parents just need a break – I encourage them to go get something to eat or grab a cup of coffee while I sit with their child,” she said. “Other times I walk with the parents just so they can vent, or I stay with the patient while the parent steps out and occasionally the kids will open up to me about their fears and worries when their parents are out of earshot. I then take that information and relay their worries to the child life specialist or psychologist for them to help address and manage.”
Some of the services Gina helps coordinate for the division include massages for parents, family support groups, the Buddy Group that pairs a patient with a Northeast Ohio Medical University medical student, catered family dinner nights and the annual Survivorship Game held in August that features a pre-party in Perkins Square Park followed by a Rubber Ducks game. She works closely with the department’s child life specialist, social worker and psychologist and is considered an important part of the psycho-social team.
Although she only spends 24 hours a week at the hospital, Gina admits some days are harder than others.
“Random things trigger memories and that part is hard,” she said. “Luckily I have the best coworkers who step in for me in those situations. I develop relationships with families and we stay in touch regardless of whether the patient survives or passes away.”
Her desk showcases a valentine from a special patient who died and a handwritten letter from his mother.
“When a patient dies, the department sends leather-bound journals with condolences,” Gina explained. “Our department secretary makes sure all staff – from our department to volunteers, expressive therapy and PICU (pediatric intensive care unit) – who were touched by that patient and his or her family have the opportunity to share any thoughts or memories they want to send on by writing in the books.”
In the end, Gina says helping families in their time of need is her main priority.
“I have formed relationships that have changed my life,” she says. “I’m just grateful to be a part of this place again.”