Celebrating Asian American and Pacific Islander Heritage Month: PETER’s Story of Resilience and Connection in the face of hcl
At the Hairy Cell Leukemia Foundation (HCLF), we honor the diversity and strength of the patient community we serve. During Asian American and Pacific Islander Heritage Month, we are proud to share a deeply personal story from one of our community members, Peter. Peter is an Asian American whose experience with hairy cell leukemia (HCL) highlights the resilience, cultural nuance, and quiet courage so often found in our families and traditions.
Peter’s journey began with a diagnosis of classical HCL—a moment that brought immense uncertainty not just for him, but for his entire family. As the first person in his family to be diagnosed with cancer, Peter quickly learned how culture can shape the way we cope with illness. In many Asian households, he shared, emotions are not often spoken aloud. Support is expressed through quiet actions: preparing meals, cleaning the home, and staying close-even if the words “I’m scared” or “I need help” are never said.
Peter’s parents moved in to care for him, selflessly offering their strength during his initial treatment. But as Peter’s recovery became more complicated and a second biopsy showed signs of relapse, he made a difficult decision: to shield his family from the stress and seek strength elsewhere.
That’s when Peter found the Hairy Cell Leukemia Foundation.
Through online roundtables and educational programs, Peter connected with other patients and learned about new treatment options. The knowledge he gained—and the stories he heard—helped him feel less alone.
He received targeted therapy without needing to isolate, but he kept the news from his family so they could focus on regaining their health. Eventually, Peter shared his experience with his parents. Though initially surprised, they were comforted by the information Peter had gathered—proof that HCL is manageable and that he had found a trusted community to walk alongside him.
Reflecting on his journey, Peter shared, “This experience has deepened my appreciation for my family. I am also grateful to the Hairy Cell Leukemia Foundation for providing a balanced support system. Both my parents and the foundation have helped me navigate this journey and maintain a positive outlook.”
To other HCL patients from Asian backgrounds, Peter offers a powerful message:
“Growing up, I was taught to be passive. I still struggle to speak up, especially in groups. During my first roundtable, I nearly logged off. But attending several sessions gave me confidence. Talking to others with similar experiences has been healing and empowering. I want other Asian patients to know: even if it’s uncomfortable at first, advocating for yourself and building a support system will help you face this journey with strength.”
This month, and every month, we are proud to stand with patients like Peter who remind us that strength can be quiet, but no less powerful. Thank you, Peter, for your courage, and for helping others see that community, connection, and cultural understanding are essential to healing.
To learn more about our roundtables, educational resources, and support programs for all HCL patients, including those from diverse cultural backgrounds—visit our Patient Support page.>>
Q&A with Peter
1. Reflecting on your journey with HCL, how has your cultural heritage influenced your approach to facing challenges and maintaining resilience throughout your treatment and recovery?
"When I was diagnosed with classical hairy cell leukemia, the experience was overwhelming for both my parents and me. I am the first in my family to be diagnosed with cancer. In our Asian culture, communication between parents and children is often passive and reserved. Mental and behavioral health are rarely discussed openly; instead, we express ourselves through actions rather than words. This cultural norm made it challenging to navigate the emotional aspects of my diagnosis.
My parents relocated to live with me to provide support. Their resilience was evident—they cooked for me, kept my home clean, and ensured I had everything I needed. However, their health began to decline under the stress. My mother developed stress-induced paroxysmal atrial fibrillation, and my father was frequently hospitalized with stomach ulcers. Yet, they never expressed their emotional strain; they continued to support me silently. For the first time, I recognized their vulnerability.
When a second biopsy indicated that I wasn't in remission and would relapse, I reached out to the Hairy Cell Leukemia Foundation for support. Connecting with other patients and hearing their experiences provided me with valuable insights and reassurance. Listening to healthcare professionals discuss current trends and clinical trial results with novel medications gave me hope that this condition was manageable.
For my second treatment, I was given targeted therapy, which did not require isolation. I chose not to inform my family about the relapse, allowing them to return to their normal lives and recover their health. This decision alleviated some of my stress. I was not alone in this journey; the Hairy Cell Leukemia Foundation offered a different type of support that I needed. The roundtable meetings allowed me to talk to other patients and hear their success stories.
I recently informed my parents about the relapse and treatment. Initially, they were disappointed, but they understood when I explained my concern for their well-being. I shared with them the information I learned from the foundation, which gave them peace of mind.
I am fortunate to have a loving and caring family. This experience has deepened my appreciation for them. I am also grateful to the Hairy Cell Leukemia Foundation for providing a balanced support system. Both my parents and the foundation have helped me navigate this journey and maintain a positive outlook."
2. What message would you like to share with other HCL patients from Asian backgrounds about finding strength and advocating for themselves in the face of a rare disease?
"As someone from an Asian background, I was raised to be more submissive and passive, which makes it difficult for me to express myself openly. I often find it hard to speak in front of groups because of this upbringing. During my first roundtable discussion, I almost logged out to avoid speaking, when we were required to join breakout groups for individual discussion. But after attending several sessions, I began to feel more confident. Over time, I started participating more and realized how crucial it is to connect with others who can relate to what you're going through. Talking with people who share similar experiences has been therapeutic for me and essential in helping me cope with this condition.
My message to other HCL patients, especially those from Asian backgrounds, is that advocating for yourself and finding a support system is vital. It may be uncomfortable at first, but over time, it will empower you to face this challenge with greater strength and resilience. Fortunately, the Hairy Cell Leukemia Foundation provides a platform for us to help support each other."
Do you have a story to share as part of your cultural heritage or patient journey? We'd love to hear from you. Email us at info@hairycellleukemia.org.