The Power of Patient and Family Centered Care: One Mom’s Journey

By Sara Dickison Taylor

On June 2, 2008, my then 5 ½-year-old daughter was diagnosed with Acute Lymphoblastic Leukemia (ALL). My world would never be the same.

My husband and I had an eerie sense that something was very wrong. Emily’s high fevers were not resolving, even after countless days of ibuprofen doses, and her skin was pale as snow. And then, on the evening of June 2nd , we were forced to dive head first into the unfamiliar and scary world of cancer. As parents we do everything in our power to protect our children from harm – for isn’t that our ultimate job? But how do you navigate these new and unchartered waters as a parent, a mother, and a caregiver?

Emily in treatment
Emily Taylor during her treatment for ALL.

Emily’s cancer treatment plan spanned an intense two-year period where she endured one surgery to insert her port-a-cath and spent 55 days inpatient at Boston Children’s Hospital. Over those two years, she underwent 5 bone marrow biopsies, 25 spinal taps with inthrathecal chemo, 4 MRI’s, 3 CAT scans, 42 infusions of Vincristine (chemotherapy), 28 shots of asparaginase in her leg (chemo), 105 infusions of methotrexate (chemotherapy), 320 doses of steroids, 510 doses of 6-mp (chemotherapy), 225 doses of Bactrim, 10 blood transfusions, 10 antibody transfusions, 7 platelet transfusions, 15 unexpected visits to the ER, a weekend stay in the hospital for pneumonia and 70 trips to the Jimmy Fund Clinic for both planned and unplanned appointments. Before then we had completely taken for granted the world-class medical care available in our own backyard.

For two years straight we tracked every obstacle and put our best foot forward in the face of uncertainty. Yet, after being in treatment for over a year, I had a strong need to give back to the amazing institute that was fighting to save my little girl’s life. I joined the Pediatric Patient Family Advisory Council (PPFAC) at Dana Farber/Boston Children’s Cancer and Blood Disorders Center as a parent, caretaker and family member. I wanted to serve as a true advocate for those in need. Currently, I attend monthly meetings with other parents, caregivers, as well as senior leaders, oncologists and nurse managers of Dana-Farber and Boston Children’s Hospital. Collectively our main mission is to make certain the patient and family voice is a part of every single moment of care. Our members take part in several committees throughout the Institute – confirming that our opinions and thoughts are at the forefront of each discussion.

Sara Dickison Taylor with Emily
PFAC member Sara Dickison Taylor with her daughter Emily.

Several years ago I had the pleasure of representing Dana-Farber and speaking at The SIOP Conference in London – an international gathering of Pediatric Oncologists and Nurses from all over the world to discuss new advances of treatment and the vital and critical role the patient and family voice carries. Four times annually both the Adult and Pediatric Councils band together to strategize and brainstorm new ways of casting light on the patient and family voice. As a collective group we manifest incredible change and cheer on advocacy in every corner of Dana-Farber. Our shared experiences ultimately shape the future care of others.

Today, my daughter is a vibrant, spunky and healthy 13-year-old teenager who loves ballet and dreams of becoming a doctor. She is a constant reminder of how far we’ve come and the long and sometimes unyielding road we’ve travelled. I am beyond grateful to share my story and the countless stories of others as we continue our valiant fight in the battle against cancer. We each have one voice, but together we form a joyous chorus of hope and the eager promise of another tomorrow.