Late on a Wednesday night, in the radiology suite of Children's Hospital, a kind and gentle radiologist told us that our daughter had a brain tumor. We didn't know yet what it would mean for her future but my husband and I are both doctors and we understood immediately the wide breadth of possibilities that our daughter's future could hold. As we went to the ER and then up to the Pediatric Intensive Care Unit for one of the longest and hardest nights of our lives, we worried about so many things. And yet, in that night and in the days and weeks that followed, we also were fortunate that there were things we didn't have to worry about -- realities that unfortunately impact so many other families walking this path alongside us. We didn't worry about whether we could take time off of work and still keep our jobs, or whether we could afford the medical care she would need (thanks to good health insurance). We didn't worry about how we would travel from a rural area to a major medical center to be able to access the specialty care she needs. We didn't worry about whether a medical language interpreter would be able to help us understand our daughter's treatment options and communicate our needs in a language different from that of our medical team.
Our daughter, Maddie, is a person who cares deeply about injustice and unfairness in the world around her. She looks around and she notices things in the oncology clinic and the hospital that make the impossibly difficult experience of being a child with brain cancer (or caring for a child with brain cancer) even harder for some families.
I have had the opportunity in my work on the Lilabean Foundation board to sit in on the Children's Brain Tumor Network (CBTN) committee focused on Diversity, Equity & Inclusion in the care of kids with pediatric brain cancer. One of their current projects is to increase access to translated clinical trial consent forms, information sheets, and instructions, so that more families will have access to the forms and instructions they need in the language they speak. This will allow more families to fully understand the options and care, and increase access to clinical trials that offer potentially lifesaving or life-changing treatment.
To honor Maddie and her desire to make the world a little more just for other children, we are delighted that the Lilabean Foundation is partnering with us so that all donations from Maddie's hero page will support the work of the CBTN DEI team to increase access to language translated forms for more children and families.
As with all things on this journey, we are following Maddie's lead. We are grateful to so many people who walk alongside us to support her vision for a different future for kids with pediatric brain cancer. Our hero is brave and bold and kind and cares deeply about the world around her, and we are honored to follow her lead.