The Tommy Fund: A Legacy of Support and Growth for Pediatric Oncology

Needs on the seventh floor of Smilow Cancer Hospital are both great and small. A baby bottle warmer, a tutor, a cup of coffee, a utility bill, a takeout lunch, a car payment, a crib, a new stuffie.

Meeting those needs builds trust between patients, parents and providers, helping to support the many steps in the journey from childhood cancer diagnosis to discharge.

The Tommy Fund for Childhood Cancer has helped meet those needs and supported those journeys for decades. The non-profit organization is independent of Smilow, Yale New Haven Children’s Hospital, and the Yale New Haven Health System, but it has long been woven into the fabric of their missions.

“They have a durable commitment to the children, families and the providers—the trainees, faculty, and staff—which is unique to the Tommy Fund. It’s an open door,” says Stephanie Massaro, MD, MPH, who came to Yale as a pediatric fellow nearly 20 years ago and never left.

Two decades ago, when Massaro began her training as a clinical fellow, the Tommy Fund helped, supporting the need for a subspecialty fellowship in pediatric hematology/oncology. “I don’t know that [the fund] has ever said ‘no’ to a need," said Massaro who is now medical director of Pediatric Hematology/Oncology & Palliative Care.

Like many nonprofits, the Tommy Fund’s history—stretching back more than 70 years to its origin story in the 1950s—is marked by highlights of impressive volunteer efforts and recently renewed energy igniting significant growth.

The past few decades, in particular more recent years, have been the Tommy Fund’s most active period of growth. “The program has grown significantly and, with Rebecca, quite productively,” Massaro said of the fund’s director Rebecca Santoli.

In addition to the everyday needs of patients and their families, the fund has also been instrumental in supporting the founding of Connecticut’s first childhood cancer survivorship program HEROS, Health, Education, Research & Outcomes for Survivors, in 2003; provided financial support for the training of pediatric hematology/oncology as well as palliative care providers; organized volunteer support for the annual fundraiser for Smilow, the Closer to Free ride; and the annual “Celebration of Survivorship” picnic and the “Night of Remembrance” for patients, families, staff and friends.

Dozens of people, thousands of donations, and concentrated commitment fueled the growth that began from a series of smaller sparks.

From Small Beginnings to Lifelong Impact

“I remember when [the Tommy Fund] was pretty much…well, not much,” recalls Denise Carr, RN, MHA, BSN-RN, patient service manager for Pediatric Inpatient Services. She was thinking back to her earliest days, more than 35 years ago, as an oncology/hematology nurse. “When I came into it, there was a dad of one of the patients who was trying to resurrect the Tommy Fund and make people aware of it. [The fund] did little things to help that not many people knew about,” Carr recalls. “It was volunteer work. It was a handful of parents trying to get it off the ground and make it work for a few years.”

By the mid-1980s, treatment for childhood cancers had made significant advances in survival rates and treatment protocols. In turn, there was space to manage patient side effects, to consider and plan for long-term quality of life, and improve hospital procedures and navigation.

“It started with administrators in the hospital, but over time the people who kept it going were the staff—nurses, doctors, social workers—and our families,” says Rebecca Santoli, the first full-time administrator of the fund who was hired three years ago and has heard many stories about its efforts. “It’s the staff who work hand-in-hand with us, who help keep the mission moving.”
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The Tommy Fund, which estimates it has helped thousands of patients and families over the decades, has always been a lean operation primarily focused on the 150, or so, new diagnoses in pediatric oncology at Smilow annually. The team estimates the Fund for Families covers about $20,000 in requests each month.

Joining Santoli, and assistant director Michele Krasznai, are the volunteers, about half friends and family members of patients (past and present) and another half of mostly hospital staff. A portion of Tommy Fund volunteers are former patients, including the chairman of the board Joseph Bowman—a father of four who completed his treatment nearly 30 years ago—and several pediatric hematology/oncology nurses.

“One of our relatively new weekly volunteers is a woman who lost her son, Louis, 25 years ago and remembered what the Tommy Fund did back then. She reached out to say that she was in a place in her life now that she can help, give back,” Santoli said.

The non-profit’s support is largely built on donations, and time offered by staff and volunteers. Other sources of income include an annual gala, the relatively new Hats for Hope program in schools (pledge to the Tommy Fund and get to wear a hat in school all day), golf tournament, and more.

Carr remembers there was a boost to the Tommy Fund with the 2009 opening of the Smilow Cancer Hospital, after which the fund got involved with the annual Closer to Free fundraising bike ride as well.

“So, little by little our name got out there. Different people opened different doors. It all really started moving the Tommy Fund needle in the right direction,” says Carr, who remembers a chance meeting with the organizer of a Stamford fundraiser for an out-of-state cancer hospital more than a decade ago. “I said to him ‘What about our kids being treated right here in Connecticut in New Haven?’ The gentleman said, ‘Give me more information…next year we’re going to do this for the Tommy Fund.’ “

The first Tommy Fund annual gala was in 2017, and it has grown each year it’s been held since then. This year, Carr will be the evening’s honoree on April 24, which she said would have pleased her recently deceased husband, an entertainer, who years ago had taken her to the Stamford event that gave rise to the Tommy Fund gala.

Carr also attributes the fund’s recent success to the board’s decision to hire a director for the non-profit. “We were doing things on paper, by hand, old school. Rebecca has really taken it to another level,” she says.

Similarly, Carr feels privileged to have seen the dramatic changes in cancer care and societal views over her four-decade career.

“When I first started these children and families were struggling with lower [survival] rates and awful side effects from months and months of chemotherapy. Now, our protocols are that much better, with the supplemental treatments to help with the side effects,” Carr says. “And overall, having a child with cancer is not so much a stigma now. People are more supportive. You even see other kids shaving their heads in support or participating in the Hats for Hope fundraiser.”

The Tommy Fund also has a longstanding relationship with the Closer to Free fundraising bike ride each early autumn for 15 years.

“Not only do they support our Kid Zone at the event, but they fuel a large team of riders that is comprised of patients and their families, clinical staff and Tommy Fund board members," says Jessica Scheps, of the YNHH office of development. “The Ride appreciates their years of ongoing generosity and always supports their recruitment and fundraising efforts.”

Planning Life After Cancer

Given the statistical likelihood that most of today’s childhood cancers will be cured, pediatric oncology has broadened its focus to help patients and families maintain present-day goals in preparation for returning to elementary or high school and friends, attending college, entering the work force, and having families of their own.

During the lengthy hospital stays sometimes necessary for treatment, Justin Gardner—a school support specialist, or teacher—works with patients to help keep them on track academically. The fund maintains a closetful of school supplies for all patients. Also, the fund hosts a monthly tutor session at its Shelton facility for patient/students, or they can meet online for help from a pair of public-school teachers.

Many patients who have recently completed their cancer therapy, as well as many longer-term survivors of childhood cancers, make annual visits to the HEROS survivorship clinic, which was begun with Tommy Fund support more than two decades ago and has seen nearly 900 survivors since its inception.

“It was founded at about the same time as the long-term follow-up guidelines for pediatric cancers were published,” says Rozalyn Levine Rodwin, MD, MHS, who is director of the Pediatric HEROS Survivorship Program.

While there might be some hesitancy about returning to the hospital for some, Rodwin says, “most are pleasantly surprised that [the visit] is really focused on keeping them healthy. It’s a totally different mindset than treating the cancer, and monitoring for its recurrence.”

The level of checkup, or surveillance, depends on a patient’s course of treatment. All visits include a review of the medical history and physical examination, screening for social and emotional outcomes, identification of any needs that can be helped with additional school or emotional support, financial resources, physical or occupational therapies, or referral to medical sub-specialists. Based on the patient’s prior cancer treatment, survivors also receive an individualized plan for lifelong monitoring including neuropsychological testing to track development, and laboratory and imaging testing to assess for chronic conditions that can occur because of their treatment.

The survivorship clinic—whose staff is still partially supported by the Tommy Fund—has multi-disciplinary teams of an attending physician, nurse practitioner, nurse coordinator, psychologist, dietician, physical therapist, and researchers studying long-term effects of cancer therapy. The team is committed to supporting the long-term health of the one-time young men and women successfully treated in the same hospital.

Tommy Mozdzierz was a 4-year-old fire department enthusiast when he died of cancer in 1953. Before Tommy passed, the firemen in his hometown of New Britain raised nearly $1,000 to help his family and $8,000 for leukemia research at Yale. With less than $10,000 to start, the Tommy Fund established an enduring legacy.