By Sara Dickison Taylor
When our daughter Emily was diagnosed with leukemia at age 5, we found solace and support from other families facing pediatric cancer at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
Our visits to Dana-Farber’s Jimmy Fund Clinic became a well-rehearsed play. If it was Friday, it was clinic day. Instead of going to kindergarten or playing with her friends like most 5-year-olds, Emily had her vital signs taken, had blood drawn through her Port-a-Cath, and received a weekly infusion of chemotherapy, platelets, and blood. It was difficult at times, but making friends with other families going through the exact same thing made it bearable.
It takes a village to help you through a child’s cancer treatment, and that includes other families as well as our clinical care team. The Jimmy Fund Clinic usually schedules appointments so that children come in on the same day each week – giving their patients and families a real sense of continuity. We forged relationships with many other “Friday families.” Seeing familiar faces lifted us up and offered a sense of comfort that was just as important for us parents as for the kids. The clinic became a small community for us – our own village.
There were several other children with Emily’s type of leukemia receiving treatment at the same time – including one family we met while she was an inpatient at Children’s Hospital Boston. We became their touchstone as Emily was further along in treatment than their son. When they saw us, they were able to think “Oh, wait, it’s going to get better.” It felt good to be their beacon of light on the other side of the fence.
Emily’s treatment ended in July 2010, and she’s doing great. We came full circle last summer, when we got together with another Friday family whose son is the same age as Emily. Knowing what these two kids had been through, we were overjoyed to see them playing and hanging out like two regular 9-year-olds.
Our time at the Jimmy Fund Clinic showed us that cancer can bring together people who ordinarily may have little in common. We found unexpected friendships and the consolation of being woven into a community of other families who shared difficult circumstances. The experience lightened our burden and really made us feel that at the end of the day, in the midst of hardship, things were going to be OK.
Sara Dickison Taylor is a co-chair of the pediatric Patient and Family Advisory Council at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Today, Emily is 9 years old and cancer free.