How to BEST Manage Mental Health and Pain of a Long-term Diagnosis?
Expanded psychotherapy program helps UCSF Benioff Oakland pediatric patients and their families navigate complex treatments for cancer and blood disorders.
When Manvir Guleria was first diagnosed with neuroblastoma, he was a frustrated 9-year-old who didn’t know how to handle the painful treatments and long hospital stays that resulted.
Manvir’s family spent more days than they could count at UCSF Benioff Children’s Hospital Oakland due to the cancer – which develops in immature nerve cells, often in young children. He underwent a complicated tumor removal surgery, nine rounds of chemotherapy, two bone marrow transplants and several immunotherapy treatments – often spending 30 straight days in the hospital.
“At first Manvir was very angry and withdrawn, but after he started working with the BEST team, he took everything much more in stride and made connections with people at the hospital, which made it all less lonely,” said Manvir’s mom, Pawan.
She credits the UCSF Benioff Oakland Braddock Emotional Support Team (BEST) with helping him better manage the many hospitalizations, tests and procedures he endured over the past two years. BEST provides mental and behavioral health coping support care to pediatric patients and their families, so they have the tools and resources to deal with the emotional strain and physical pain of their critical and sometimes life-threatening blood and cancer diagnoses.
“Medical treatments these young patients receive can be quite traumatic, especially for those facing life-long or significant illnesses,” said Dina Hankin, PhD, a psychologist and BEST’s clinical coordinator/manager. “We minimize the long-term traumatic impact for patients and their families. We help them manage and cope with typical emotional responses to atypical situations. For younger patients, we use play – like special board games and dolls and role-playing. And for other older patients and their families, it’s typically talk therapy.”
“The BEST team was integrated into our daily life and helped us through the hardest time in our lives.”
Pawan, Manvir’s mother
“The BEST team was integrated into our daily life and helped us through the hardest time in our lives.”
Pawan, Manvir’s mother
Support to speak about her emotions
Thanks to a new $6.6 million gift, BEST plans to expand over the next three years to reach nearly every child and young adult seen for rare blood diseases and cancer at UCSF Benioff Oakland. This is the latest investment by the Braddock Philanthropies, which provided the initial funding to launch BEST five years ago.
The expansion will triple the number of behavioral health screenings of blood and cancer patients ages 0 to 26 so that all are screened. It will also triple the number of medical clinics in which BEST clinicians are immersed, bringing the total to 28. Hankin estimates this will translate to an estimated 50% increase in young patients receiving mental and behavioral health services. BEST is the only program of its kind in the Bay Area and draws patients from across California and near Reno, Nevada.
It can be emotionally draining to live your whole life with a medical condition or get a cancer diagnosis, said Hankin. “While not everyone requires mental or behavioral health care, they can all benefit from it. We collaborate with the family too, because if you don’t treat the family, you’re not going to see change.”
Pawan greatly appreciated the support she received from BEST and the outlet it gave her to speak about her emotions. “You’re so focused on your child, you don’t think about yourself,” she said. “But the BEST team wasn’t focused only on Manvir, they let me ramble and have an outlet I didn’t otherwise have.”
Manvir really cherished visits from the facility dog Ahbi and her handler, Hania Thomas-Adams, a child life specialist at UCSF Benioff Oakland. Ahbi works with hundreds of patients each year, motivating them to take medicine, get out of bed or work hard during physical therapy sessions, or simply providing snuggles and emotional safety when that’s what young patients need most.
Her son is now in remission and gearing up to return to school this fall, Pawan shared with emotion in her voice. When planning his bell-ringing ceremony to celebrate the end of his cancer treatment and that he hopefully wouldn’t be returning to the hospital again, he insisted on inviting several BEST clinicians, along with Ahbi the dog.
“He has close relationships now with so many people at the hospital, and he wanted them all to be there so he could thank them,” Pawan said. “The BEST team was integrated into our daily life and helped us through the hardest time in our lives.”
