The unfulfilled promise from a forgotten child

"How many siblings do you have?" To this day, I dread that question. I often lie to avoid discussing the fact that I lost my brother, Stanley, to cancer. I hate talking about his ailment; I detest anticipating the sympathetic stares that inevitably follow once cancer is mentioned. The moment I talk about Stanley's cancer, the whole narrative shifts entirely to him, and bits and pieces of my identity are chipped away each time I answer that question truthfully. I am a "forgotten child." The "forgotten children" of pediatric cancer are the siblings. While research in the psychosocial care of these "forgotten children" is advancing, a significant gap still exists in addressing the psychosocial effects of cancer on siblings compared to patients or caregivers, and there is a limited amount of evidence-based interventions to support their well-being. Twelves year after the loss of my brother Stanley to metastatic osteosarcoma, I reflect on my hidden role as a "forgotten child" during his battle with cancer. Two tragedies have defined the trajectory of my life: one pushed me away from medicine, and paradoxically, another pulled me back in. When I was 7 years old, my oldest brother Sammy was diagnosed with subacute sclerosing panencephalitis (SSPE), a horrifying sequela of measles infection that transformed him into a vegetative state. I developed early caregiving skills out of necessity, including mixing/giving his nasogastric tube feed, shifting him from different positions to prevent bed sores, and managing his physical therapy to prevent worsening of his contractures and muscle atrophy. These were among a few of the "chores" that I had to do after school every day. Instead of joining friends for activities, I had to rush home to care for Sammy. I rarely invited friends over, feeling ashamed and unsure how to explain his illness. The innocence and joy of childhood were also stripped away, as I confronted the harsh reality of Sammy's vegetative state and understood that having fun was no longer a priority. Sammy's illness overshadowed nearly my entire childhood until his death when I turned 17, leaving me with deep-seated resentment toward medicine. The lack of research to find a cure for SSPE was devastating and frustrating. I distanced myself as far away from medicine as possible, as it had failed to save Sammy's life. After Sammy's death, my family dynamics shifted dramatically. My parents' relationship fell apart, I cannot recall the last time I saw them smile. Depression, resentment, and blame quickly engulfed our household. I managed to stay away from medicine briefly in college pursuing a dance major. Truth be told, dance has been my passion ever since Sammy was diagnosed with SSPE. It became my escape, a form of self-expression that grounds me. Dance allowed me to convey the anger, frustration, sadness, numbness, and joy that words alone cannot capture. However, this artistic pursuit was short-lived, as my second elder brother, Stanley, was diagnosed with metastatic osteosarcoma of the ischium at the age of 24, when I was 20 years old and attending college. Looking back, perhaps Sammy's experience prepared me perfectly for this moment. I remember everything like it happened yesterday. When Stanley was diagnosed, I quickly slipped into my role as a caregiver with ease. I recall the numerous emergency room (ER) visits for fever and neutropenia. Stanley hated going to the ER for fevers, because he knew admission was inevitable. I recall the heated arguments that would ensue after measuring a temperature of greater than 38.3°C (it would take an hour of negotiating with him to finally convince him to go to the ER). The morphine patient-controlled analgesia (PCA) pump sounds became a soothing melodic monotone at night. I learned how to sleep with bright lights on because Stanley was afraid of dying in the dark. I learned how to make myself comfortable in the hospital pull-out couch as that became my second home. I learned how to bathe him every night while keeping his dressing dry. Lastly, I remember how much he relied on me to be strong for our family so that he didn't need to be. Naturally, everything became about Stanley. But as the family focused entirely on not losing another son, they stopped asking how I was doing. I was afraid of expressing any emotions because I did not want to add to their burden. As a result, I was quickly forgotten, and it became easier to remain unseen. These moments have had a lasting impact in my life. Yet no one prepared me. No one explained to me how I would unconsciously share the burden of cancer with Stanley. There was no guidebook or help. There was very limited support, except from my best friends and close family. As a 20-year-old college student, I assumed the role as his caregiver, and took on roles and made informed medical decisions that exceeded my maturity level, all while maintaining my GPA and achieving perfect attendance. I kept Stanley's cancer diagnosis a secret, sharing it with hardly anyone to avoid sympathy or empathy, which was extremely isolating. It was not about me. He was the one with osteosarcoma. Most importantly, I never took time off or leave, maintaining a façade of "normalcy." This "normal" environment provided an escape from the harsh reality of Stanley's cancer. I was in a perpetual limbo of uncertainty, unable to plan more than a day in advance because I did not know what the next day would bring for Stanley. I was literally living day by day. In retrospect, I wish I had someone to talk to—a counselor, therapist, or someone who truly understood what I was going through. Stanley fought valiantly against osteosarcoma, but succumbed to the disease in November of 2011 (he was 26 years old and I was 22). Right before he died, Stanley made me promise him to make a significant impact in the fight against osteosarcoma. His death reignited my interest in medicine and became the fuel I needed to move forward. Thus, I made it my mission to become a pediatric sarcoma physician-scientist, aspiring to fulfil my promise and assist other children, adolescents, and young adults affected by sarcomas. These tragic experiences in my life form the very fabric of who I am today and the type of oncologist I have become. Having to witness and care for an older sibling in a vegetative state at such a young age forced me to grow-up faster than I could have imagined, grasping the concept of memento mori, a Latin phrase that means: "remember that you must die," a reminder of our own mortality. When Stanley was diagnosed with osteosarcoma, my family was already fragmented from Sammy's death. I was forced to become the glue for the family, desperately holding on to all the broken pieces. Yet Stanley was the one who was diagnosed with cancer, so I forced myself to hide all my stress and/or emotions, putting on a façade for him, constantly joking and putting on a smile for him so that he could carry on treatment without any worry. Deep down inside, I was drowning in fear, doubt, and frustration. I became a forgotten child, holding onto glimmers of hope, telling Stanley that he will beat osteosarcoma despite knowing the overwhelming unfavorable prognosis through self-research in college. Now, as an oncologist, I gain a deeper appreciation of what the siblings have to go through. I make sure that I pay extra attention to the siblings in the room, being attentive not only to the patient's emotions but to the siblings' reactions. I engage the siblings directly, always asking for their names. At every visit, I consistently ask the parents about the siblings' social and academic well-being. I also ask about the support system in place for them, emphasizing the importance of noticing them, as the siblings are such a crucial part of the equation in their child's treatment journey. I involve our child-life team and social workers early on to make sure the siblings are attended to. Because I know: the moment this cancer diagnosis conference is done—the siblings will become forgotten. The family's attention will inevitably be shifted toward the ill-sibling. I encourage you to dedicate 5 minutes of each visit to kindly inquire about your patients' siblings. Acknowledge them, and provide available support systems to ensure that they are not forgotten. One of the last memories I have of Stanley is when he pleaded with me to convince my parents that he wanted to be comfort-focused. Having that conversation with my parents to honor his wishes went against every fiber in my body simply because I wanted him to live. But Stanley knew I was the only one that could get through to our parents, and to this day, I still remember telling our parents that it's time to let go despite not wanting to myself. In the end, we honored his wishes, and he died peacefully in his hospital bed. The scars on our body make us who we are, serving as the pandora's box that holds our deepest fear and traumatic experiences. Through these experiences I've gone through post-traumatic growth, developing a high level of resiliency and an understanding of how short life is. Twelve years since Stanley has passed, the field for siblings of children with cancer is gradually advancing. However, guidelines or standards supporting these siblings are few and seldom utilized. I wish to shed light on these forgotten children in hopes of improving their psychosocial care. I am not quite there yet, but I will get there. I am determined to make an impact in honor of Stanley. I continue to mention Stanley's name in all my publications as a way to keep him alive and as a reminder to myself that my job isn't done until I make a dent in the field of osteosarcoma. Stanley's legacy is honored not only through my work, but also in the way I interact, talk, and joke with my patients, and how I approach life—he has truly given me my purpose. Both Sammy's and Stanley's experiences have transformed my clinical practice to become more family-centered care that includes siblings. To ensure that they are no longer forgotten. To all my forgotten children, I see you and I hear you. In loving memory of Sammy and Stanley Kuo, and Noah Shohet. The author declares no conflicts of interest.