Parenting at a Challenging Time

When Debbie Santangelo’s husband Eric was diagnosed with stage IV lung cancer at the age of 42 it came as a shock to everyone, including their three young children.  Eric was healthy up until his diagnosis, when he had a blemish removed from his face that came back as cancerous. Three months later, Eric passed from his disease. 

“Eric was determined to stay alive for his family, and he kept this positive attitude throughout his diagnosis and treatment,” said Debbie.  “However, the disease proved too big for him, and had spread too far, too fast.”  Eric spent his last 6 weeks at Smilow Cancer Hospital surrounded by his loved ones.

When Eric was first diagnosed with cancer, he and Debbie were faced with the difficult task of explaining the scenario to their three children, then aged 12, 10 and 7. As his disease progressed and his prognosis became worse, they had to talk about the fact that he may not survive.  Eric had the privilege of working from home and being with the children since they were infants and thus formed a special bond with each of them.  Debbie and Eric questioned for awhile how they were going to tell them.  They were worried about the long-term effects it could have on their personalities. When the concerns came to the attention of the involved social worker, she referred them to the Parenting at a Challenging Time (PACT) service at Smilow Cancer Hospital.

The purpose of PACT is to guide parents with cancer and teach them what terminology to use, what knowledge is age appropriate, and the skills to handle certain situations that may arise.  Andres Martin, MD, MPH, the Riva Ariella Ritvo Professor in Pediatric Oncology Psychosocial Services at the Yale Child Study Center, is a psychiatrist involved with the program and he, as well as a team of social workers, provide consultation to parents to give them a better idea of how to talk with their children after a diagnosis.

Even though Debbie has extensive background in child development as a special education teacher, she was unsure how to approach each of her children in the most supportive, appropriate way.  “PACT taught us to be honest and up front with our children, because that would help them the most in the long run.   We are so much closer as a family because of PACT.  I was made aware of what my children were going through and how it was affecting them, and they also saw how hard it was for me.  This mutual respect and understanding would never have occurred without PACT.  It opened a dialogue between us that I didn’t think was possible.”

Dr. Martin explained that PACT gives parents the tools to talk to their children in a manner that is beneficial for both of them.  The idea is to intervene and prevent issues from happening down the road.  “When a parent is diagnosed with cancer, it doesn’t mean they stop being a parent. It’s just parenting under very stressful circumstances,” explained Dr. Martin.  “The bulk of the work is with the parents and working with them to decide what’s best for their family. We serve as parenting coaches for the family unit.”  PACT can also guide the parent about how to garner additional support should that become necessary.

Bonnie Indeck, LCSW, Director of Patient Services at Yale Cancer Center, and Manager of Oncology Social Work at Smilow Cancer Hospital at Yale-New Haven, co-manages the PACT program and is one of nine social workers involved.  Since implementing the program over a year ago, there have been over 140 consults.  The goal is to eventually grow the program to address the needs of all parents undergoing cancer care.

“The idea of the program is to offer support and guidance to the parents including how to frame discussions with children, whether about a new diagnosis, the need for treatment, or end-of -life,” said Ms. Indeck. “One of our long-term goals is to help the children remain emotionally healthy so they are able to adjust to their parent's illness and its impact.  We want the parent to focus on getting well without unnecessary worry about their children.” 

After Debbie’s husband Eric passed, she was left with the questions and the grief.  PACT gave her the tips and advice she needed to guide her family through this time.  As a way to keep his memory alive, she built a Zen garden featuring bamboo plants Eric had planted that had long been forgotten in the backyard.  The garden serves as a reminder to the family of their wonderful husband and father.  Debbie also recently participated in Yale Cancer Center Schwartz Rounds, meant to help physicians, nurses, and caretakers become more aware of the importance of family involvement in care.  She shared her story, and experience with PACT, in order to promote the service and help families who might otherwise not know about the program, or seek it out on their own.  Debbie commented that it was a very positive experience, which she hopes can make a difference for another family going through a similar experience.

Debbie commented, “I can’t imagine having gone through this without the help we received from PACT.  I feel so much better knowing they are there for me and my family and can provide us with resources that will help us along the way, because this is a long term process.  Before Eric left us, he knew that his children would be okay, and that was very important for us.”