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Background  The aim of this study is to highlight the importance of having a central case managing team and to make some strong recommendations that can have a positive impact on the lives of hematopoietic stem cell transplantation survivors.    Case presentation  A 2-year-old white child who was diagnosed with acute myeloid leukemia and underwent hematopoietic stem cell transplantation in May 2014 relapsed in March 2017, and underwent a second hematopoietic stem cell transplantation in July 2017, at which point he suffered from graft-versus-host disease. This case report presents his journey and that of his caregivers, and the challenges they faced as patient and parents in pursuit of optimal quality of life during the survivorship period. The case study emphasizes not only the challenges faced by patients but also identified gaps in post-hematopoietic cell transplantation care service delivery. Furthermore, the case study also highlights the importance of involving caregivers in post-transplant care and having a better communication process and service facilitation process throughout the journey of the patient and their carer.    Conclusions  Transplant centers have a duty of care, and a proactive approach with a well-defined pathway is needed for managing post-transplant complications and reducing stress and anxiety for patients and their caregivers.    Supplementary Information  The online version contains supplementary material available at 10.1186/s13256-021-03126-4.

journal of medical case reports

Recommendations on service delivery to help reduce suffering and anxiety in patients and caregivers post-hematopoietic cell transplantation: a case report