Christopher Kuo, MD is an Attending Physician at Children’s Hospital Los Angeles and a Clinical Instructor of Pediatrics at Keck School of Medicine of USC. His commitment to Making It Better for osteosarcoma patients is driven by his brother Stanley, who passed away from osteosarcoma. His expertise in osteosarcoma is not only from a scientific and clinical perspective but from that of a family member and brother. In a recently published article “The unfulfilled promise from a forgotten child,” Dr. Kuo reflects on his experience in the aftermath of Stanley’s cancer diagnosis and in doing so, gives voice to the impact of a cancer diagnosis on siblings, which is often overlooked.
You have many years of being a caregiver, starting at the tender age of 7, for your oldest brother Sammy, and continuing into your college years for your older brother Stanley. Throughout your experience as a caregiver, you mention keeping your brothers' illness a secret from others. At the age of 7, from shame and not knowing how to talk to your friends about it. At the age of 20, to avoid empathy or sympathy, or any focus on you. Looking back, is there anything someone could have said to your 7 or 20-year-old self that would have helped you open up and turn to others for support?
Wow…what a complex but thoughtful question! Growing up in an Asian household (I’m Taiwanese), expressing feelings was never our forte. Instead of talking about our feelings - we expressed “love” through actions. And I think that cultural complexity shaped how I reacted and felt about my brothers’ ailments. Because of that, looking back, I think my 7 year-old self would have appreciated it if someone had told me that “it’s okay to talk about your feelings” because, culturally, I was never taught to open up – so I locked all my thoughts and emotions to myself. To my 20 year-old self – I think if someone with similar experiences reached out and told me that they have been through something similar and are willing to share their story with me – I would eventually open up and turn to them for support. Specifically for the 20-year old “me”, unfortunately, I think part of the young adult journey is the fight to “prove something” and the pursuit for independence, so I think just having a support system there and repeatedly being reminded that there are people around for support will eventually open me up.
You mention the pressure you felt to be the strong one, to assume this mantle so that Stanley would not have to. This pressure to be strong translated to hiding your own stress and emotions. Acknowledging that relationships and dynamics are different in families, what advice would you give to both siblings and parents to alleviate this pressure?
I really appreciate this statement: “Acknowledging that relationships and dynamics are different in families” and especially like I mentioned before – in different cultures! I think stripping all the complex layers away, at the core of it all – we are all just human and seeking connections and love. My pressure to be the strong one was borne out of love for my family and for Stanley. So it really is all about love. I think it’s important to understand what people’s “love languages” are – is it words of affirmation? Acts of service? Receiving gifts? Quality time? Or physical touch? By understanding this – I think you’ll then be able to fully express your love and have your love received, and also, to be able to fully receive and understand love coming from others. My advice to both siblings and parents would be that everyone’s giving their all to support each other, it’s important to take breaks, and more importantly to express your love. You absolutely do not have to do it alone and by communicating more we can also understand how cancer is affecting everyone.
Many patients and caregivers develop resentment towards hospitals and medicine after experiencing so many traumatic experiences associated with their treatment. Your promise to Stanley propelled you back into the world of medicine (in a major way!). Many survivors do develop an interest in medicine after their personal experiences, but it can be harder for those who have suffered great loss. How did you transform your resentment into a sense of purpose?
First and foremost – I totally understand – to feel resentment or repulsion towards hospitals and medicine after such traumatic experiences associated with their treatment. To be honest, I don’t think I’ve completely processed my grief. I think my research is my way of processing my grief. Before Stanley died, he wrote to his dear friends and families. When I read through his will, he actually wrote to cancer and cursed cancer out. I am extremely resentful towards osteosarcoma, and that resentment really fuels me because it keeps me hyper-focused and driven to one day make a dent so that I can tell Stanley that I did it for him.
You maintained a facade of normalcy which provided a reprieve from the stress of Stanley's cancer, but can also be isolating. How do you balance maintaining a sense of normalcy for the family, but not hiding or minimizing the harsh realities of a cancer diagnosis and treatment?
I don’t think I did a great job at maintaining this balance. The truth of it is that Stanley’s cancer engulfed everything so I was forced to react this way and forced to compartmentalize. I had to put things in different boxes and open them when I finally had time to deal with them. It wasn’t always pretty and the majority of the time it was a mess. And that’s okay. I don’t think I intentionally did it that way but I was able to maintain a sense of normalcy for my family while Stanley would show us the harsh realities of cancer diagnosis and treatment. If I didn’t maintain a façade of normalcy, I think it would have been too overwhelming for Stanley and my family. I am not sure if my method was right but it worked for me – because that’s what I needed to do for myself to maintain some baseline level of sanity.
Having been a sibling, a caregiver, and now a pediatric oncologist - you are uniquely positioned to provide insight into how parents can be mindful of and best manage the stress on siblings. What advice do you give your parents of newly diagnosed patients?
What a tough question to answer! I am not a family therapist or trained psychologist/psychiatrist, so I can only speak from my experience. I think this goes back to the unique cultural background of families – every family has nuances and deals with things very differently depending on their cultural roots – but again – it all comes down to love. I do not want to sound cliché but I really want to stress love and positivity. I would briefly tell them that their child just got diagnosed with cancer but the whole team (nurses, oncologists, social workers, trainees, psychologist, child life team, and many more..) is there for them. And I would stress that the sibling plays such an important role in their care so we need to make sure the sibling is adjusting appropriately as well and provide them the resources to support the sibling.
Your personal experience has made you especially attuned to the predicament and needs of siblings in your role as a pediatric oncologist. Can you share your top 3 takeaways for your colleagues in providing family-centered care that includes siblings?
1. Siblings play such a pivotal role in the care for the child with cancer. Acknowledge them, chat with them during the visit, and ask and remember their names.
2. Because siblings are so good at maintaining a sense of normalcy – check in with parents but also with the siblings to make sure they are not neglected.
3. Remind them that they are important, loved, and cared for.
