Lauren’s medicine arrives and her mother, Shawna, sets the timer on her phone. One minute.
Tick … tick … tick …
Lauren, a 5-year-old acute lymphoblastic leukemia patient, is a reluctant medicine taker and has a history of stalling.
Tick … tick … tick …
If Lauren takes the medicine in under a minute, Shawna offers a surprise. If Lauren doesn’t, she’ll still be required to take the medicine, but there will be no surprise.
Tick … tick … tick …
Typically, Lauren takes her medicine and earns her surprise, and Shawna breathes a sigh of relief. It’s a simple trick Shawna picked up from Melissa Faith, Ph.D., a psychologist embedded in the Johns Hopkins All Children’s Cancer & Blood Disorders Institute.
“Lauren is very good at stalling, any trick in the book for her not to take her medicine right then,” Shawna says. “Dr. Faith explained it’s like a fight or flight kind of thing that goes on with the kids. It gets their adrenaline up and builds anxiety. I thought I was doing Lauren a favor by delaying, but the sooner you can get it over with the better for the child, according to the research.
“It has really helped us out with the medicine battle.”
Forming a Bond
When Lauren and her family started their cancer journey in March 2016, the hospital did not have a dedicated psychologist in the cancer institute to assist families.
Faith met Lauren in November 2018 after a relapse as she prepared for a bone marrow transplant.
“Lauren’s early life experiences were shaped by cancer and so a lot of it was helping the family provide emotionally normative experiences and emotional coaching to a child going through illness,” Faith says of forming a relationship. “It’s a matter of helping the family navigate things they were already doing very well, but in the context of pediatric cancer.
“Lauren is very fortunate that her family is an incredible support system. Her parents are fantastic at coaching her on dealing with negative emotions and modeling good coping and relationship skills.”
The Center for Behavioral Health at Johns Hopkins All Children’s supports patients in critical areas ranging from emotional and coping skills as with Lauren’s family to developmental and mental health issues with other families. Data from the Centers for Disease Control show that one in five children in the United States between the ages of 3 and 17 have a diagnosable mental, emotional or behavioral health disorder. Some families might encounter multiple challenges.
“Cancer does not discriminate so if you have a child or adolescent who was already experiencing mental health problems or a family that was already struggling with resources or coping, cancer serves as just one more stressor on an already heavily taxed family system,” Faith says of her work with other patient families. “Having a psychologist who knows about cancer treatment and can form a team with the family can be one way to help patients and their families capitalize on their strengths.”
Jabil and the All Star Children’s Foundation of Sarasota are among many who provide philanthropic support for Center for Behavioral Health programs, and addressing the mental health needs of children and families offers many more opportunities as the hospital expands its psychology, neuropsychology and psychiatry programs.
For instance, Faith seeks to provide greater support to cancer survivor families with healthy lifestyle programs, and she’d like to add an additional post-doctoral fellow to expand clinical support and access for families.
“There has been a nationally growing recognition that having psychologists specialize by illness group can allow psychologists to provide more patient-specific care and better tailor psychological interventions,” Faith says.
Preparing for the Future
Lauren has responded well to Faith’s outreach, and Shawna is grateful for the support.
“She gives me some real-world examples of what studies have shown and research has shown,” Shawna says. “That really helps me. I don’t have time to do the research. This is not the real world. Things totally change when your kid has cancer. It’s not a normal environment. It’s not easy.”
The survival rate for childhood cancer has soared in recent decades. For instance, the five-year survival rate for Lauren’s type—acute lymphoblastic leukemia—is 90 percent, according to the American Cancer Society.
“Now we can think not just about cancer treatment but about quality of life long term,” Faith says. “What is this child going to be like when she’s 25, 35 or 45? What will the meaningfulness of their relationships be? Will they be able to manage the academic pressures? Will they be able to manage the relationships that come throughout their lives? That’s what we’re thinking about during cancer.
“Sometimes cancer treatment can last several years. If a child completely stops engaging in activities that help them develop social and emotional competencies throughout cancer treatment, we’ve essentially robbed them of some incredibly important building blocks for later functioning. Part of my role is to help families figure out how to help their children experience healthy social relationships, family relationships, and other developmentally appropriate milestones (including conflict and heartbreak) while also getting through the rigors of cancer treatment.”
This story first appeared in For the Kids magazine, a publication of the Johns Hopkins All Children’s Foundation. To support the Center for Behavioral Health, contact senior gift officer Ashley Nall at 727-767-2958.