Our son was diagnosed with leukemia two days before his fourth birthday. In an instant, our world revolved around learning about his disease, treatments, medicine and test results.
Our immediate family lives far away, so our community of friends, neighbors and coworkers became important sources of support. Their support was matched by that of the medical team at University of Vermont Children’s Hospital. The doctors and nurses were generous with their patience and knowledge as we asked the same questions over and over, trying to comprehend so much information through our emotional strain and while caring for our son, his sister and each other. The medical team respected our emotional state and worked with us closely to understand our child’s treatment and prognosis.
They took the time to get to know our family.
We were fortunate that the treatment protocol for acute lymphoblastic leukemia is well-established, and that our son responded well to treatment. Families before ours had permitted their children to be studied and followed so that, later, children like our son could have a relatively more comfortable and successful treatment. Likewise, our medical team at UVM Children’s Hospital and the families under their care before us had shared personal experiences with the Patient and Family Experience team that helped our child with coping and thriving under treatment. I choose to give back as a Patient and Family Advisor because I know pieces of our experience will help the families who come after us.
I want to help as others have helped us. My advice to other families under the care of UVM Children’s Hospital is to ask for help. Whether facing a common or rare diagnosis, there is a range of resources available to you and a community of peers who can help you through it. Ask questions of the medical team, over and over, until you understand. Their patience is endless, and their compassion is sincere.
Toni Josey volunteers as a Patient and Family Advisor at UVM Children’s Hospital.
Patients and families have valuable wisdom, advice and experiences to share. We invite families to join our Patient/Family Advisory Council. Interested? Join us by visiting: https://www.uvmhealth.org/medcenter/Pages/Patients-and-Visitors/Patients/Patient-and-Family-Advisors.aspx