Article

Helping Families Navigate a Devastating Diagnosis

September 8, 2020

Having a child diagnosed with cancer is one of the most devastating experiences a parent will ever face. Fortunately, donors enable us to give families extensive support – both during treatment and the years that follow.

Center for Cancer and Blood Disorders’ Wellness Program

Imagine, for a moment, that a doctor at Children’s Hospital Colorado just gave you the most difficult news you could ever receive: Your child has cancer. Your feelings in that moment range from heart-broken and angry to grief-stricken and terrified. You worry about your precious baby. About the future. About your family’s finances. About your other kids.

Your child is in pain. She doesn’t fully understand what cancer is. She definitely doesn’t know what to expect – and neither do you. It all feels overwhelming.

Then, a social worker from the Center for Cancer and Blood Disorders’ Wellness Program enters the room. She introduces herself and tells you she will be there each step of the way through this journey, ensuring that you have everything your family needs to get through this terrible situation.

You don’t know it yet, but the Wellness Program team — which consists of psychologists, social workers, Child Life specialists, spiritual care providers, art therapists, learning specialists and family navigators — will become like an extension of your own family. These dedicated caregivers will be a constant source of strength during this all-consuming, roller coaster journey that will span years, as you bravely navigate your child’s illness.

A national model

When kids are diagnosed with cancer or a blood disorder, not only are they dealing with serious health challenges, but they and their families also face numerous social, psychological, emotional and financial stressors related to their condition. These pressures can impact a child’s ability to heal and affect the whole family’s capacity to cope.

That’s why Children’s Colorado recruited Dr. Bob Casey, a pediatric psychologist with extensive experience treating children with cancer, to launch a research-based, multidisciplinary Wellness Program at the Center for Cancer and Blood Disorders more than 10 years ago. Today, it’s one of the most unique, comprehensive and clinically integrated pediatric cancer support programs in the country.

At many other kids’ hospitals, a wellness team only gets involved after a family is facing a hardship. At Children’s Colorado, a group of psychosocial oncology experts is on board from the moment each one of our patients is diagnosed – about 300 kids each year at Children’s Colorado. This support team is fully integrated into a child’s care plan right away, so trust and strong bonds can be built from the outset, and caregivers can be on the lookout to identify potential problems before they become crises.

The program has proven to be extremely successful in improving mental and physical health outcomes, but it requires significant philanthropic support, because dedicated social workers and other therapeutic services are provided to patient families free of charge. 

“Our model is not trying to catch up and put out fires; we are being proactive and preventive,” says Dr. Casey. “The challenge is that a program like this demands substantial resources, but there is no money coming in for these services – it’s solely about providing the best care to our families.”

In the decade that Dr. Casey has spearheaded the program, it has grown exponentially, expanding from three social workers to seven and from three Child Life specialists to five. In 2011, the Wellness Program added a Family Navigator, who is dedicated entirely to accessing financial resources to support families in need. The Family Navigator concept has proved to be so valuable that it has become a hospital-wide role across all departments.

Support that helps kids survive

For Delaney and her family, the Cancer Wellness Program has been instrumental in helping them manage the anxiety, fear and sadness that she faced during and after her cancer diagnosis.

Delaney with her parents

Now 13, Delaney was 6 years old when she was diagnosed with acute lymphoblastic leukemia. Treatment consisted of three years of chemotherapy to treat the illness itself, along with bursts of high-dose steroids used to reduce the inflammation and sickness.

But Delaney said the hardest part about having cancer wasn’t the physical pain; it was the emotional distress from not being able to play sports, missing out on school and her friends, and becoming bald from the chemotherapy.

“When you are a girl, but you don’t have any hair, people assume that you are a boy,” explains Delaney’s mom, Stacey. “When she went to the restroom at school, a lot of kids would tell her that she was going into the wrong bathroom. They weren’t being mean—they were actually trying to help—but it was embarrassing.”

The Wellness Program’s team of expert caregivers helped normalize these kinds of experiences and emotions for Delaney, allowing her a way to process what was happening so she could recover more quickly.

Today, Delaney is in remission and thriving. Dr. Casey says it’s yet another example of the critical importance of psychosocial support in promoting physical healing.

“If kids are struggling emotionally, it can really interfere with their treatment,” says Dr. Casey. “We’re not just trying to make kids feel better, which is, of course, very important, but we are also helping them do what they need to survive.”

You can help fund this crucial program

Most of the services provided by the Wellness Program are provided free of charge, and many of the team member positions, including Dr. Bob Casey’s directorship, are supported almost entirely by philanthropy. The Wellness Program receives incredible support from the community – especially the Courage Classic Bicycle Tour’s Wheels of Justice cycling team – but donations can vary from year to year, making it difficult to plan ahead. Securing an endowed chair for the Wellness Program would ensure that these critical support services are available in perpetuity, minimizing the impact of funding fluctuations. Your support is vital to the ongoing success of this world-renowned model for pediatric cancer psychosocial treatment.

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