Seung Hyun Ko's Memorial Fund

After a 3-year, 2-month, and 26-day battle with Stage 4 Lung Cancer and Leptomeningeal Disease, on Tuesday, September 26, at 2:38 am, my dad died. He died from the cancer spreading throughout his brain, spine, and spinal fluid. He died at Adler Hospice Center, in Room 106, in Aldie, Virginia. My mom, Greg, and I were asleep in the room with him when he passed. We were together until the very end. We are devastated.

My family's story is a story of massive injustice.

On July 1, 2020, the day after my dad's 60th birthday and at the height of the COVID-19 global pandemic, my dad was diagnosed with Stage 3B Lung Cancer. He had a tumor on his upper right lung and lymph nodes. My husband and I immediately made the decision to become his primary caregivers, along with my mom. We lived in New York at the time, but temporarily relocated to Virginia for an entire year.

Two months after his diagnosis, he started his first 10 infusions of chemotherapy and 30 treatments of radiation. He did another 5 infusions of more intensive chemotherapy after that. Then he was put on regular infusions of immunotherapy, receiving infusions once every two weeks.

My husband and I got married after his first chemotherapy and radiation treatments, on September 20, 2020.

In August 2021, my dad lost complete hearing in his right ear. Two months later, in November 2021, we discovered that the cancer had spread to his brain, in his cerebellum and in his right auditory canal. This is when he was diagnosed with Leptomeningeal Disease — cancer of the cerebrospinal fluid. But the Leptomeningeal Disease was localized to just this one spot in his ear. We did stereotactic radiosurgery to target both tumors and put him on a targeted medication that he took twice daily, 2 pills, 12 hours apart, called Capmatinib.

In June 2022, my dad experienced complete paralysis on the right side of his face. We thought it was temporary — it was permanent. We tried everything we could to try to fix it. We didn't know the cause, but feared it was the Leptomeningeal Disease. The facial paralysis caused difficulty seeing out of his right eye, difficulty chewing, difficulty eating, and difficulty talking. His face was not his face anymore. In October 2022, we found out that the cancer had returned to the same two spots — his cerebellum and his auditory canal. We did stereotactic radiosurgery to target both tumors again.

In June 2023, my dad started having very intense coughing fits, choking, vomiting, having a lot of difficulty swallowing (dysphagia), and having difficulty controlling his bowels and urine (incontinence). His doctors thought it was the flu, they thought it was allergies — it was cancer.

On June 30, 2023 — my dad’s 63rd birthday — my family and I found out that my dad’s cancer had spread to his brain and cerebrospinal fluid. His brain MRI showed a 3-millimeter tumor on his brain stem, and a 5-millimeter tumor on the top of his spinal cord. He likely had untraceable cancer cells coating his swallowing nerves, as well. His spine MRI showed cancer cells lining his entire spine, from top to bottom, along with an 11-millimeter tumor in the middle of his spine.

From July 20 to August 2, 2023, my dad received 10 rounds of Whole Brain and Whole Spine Proton Radiation, to try and keep my dad's cancer from continuing to advance throughout his brain, spine, and spinal fluid, and to hopefully help with his swallowing issues. The radiation did not work, and on August 9, 2023, my dad was hospitalized for extreme psychological disturbances caused by the cancer in his brain, symptoms similar to late-stage dementia. He was hospitalized for 6 days until August 14, put on hospice, and removed from hospice after one day because he wanted to continue taking his cancer treatment medication.

For a month, my mom, Greg, and I tried our best to take care of my dad. But he kept having severe psychological disturbance episodes and his difficulty with swallowing continued to worsen.

The night of September 12, 2023, we drove my dad to the ER after an episode of severe vomiting, violent coughing fits, massive internal head pain, and uncontrollable anxiety. He was admitted into INOVA Fairfax Hospital that night, we were told he had aspirational pneumonia caused by his difficulty swallowing, and we were told he would die in a couple days. He fell on the hospital floor on his first day in the hospital because he tried to get up to go to the bathroom to urinate.

On September 15, we made the impossibly difficult decision to put my dad on hospice. He was on hospice at the hospital for 6 days. On September 20, he was transferred to Adler Hospice Center. I had one last birthday with my dad on September 21. The day before my mom's birthday, he died. I spent 4 hours with my dad's body. I held his cold hand. I touched his cold forehead. I said goodbye. I watched my dad's body get put into a black minivan and drive away.

In 2018, my parents lost their entire life's savings, after the landlord of their laundromat business embezzled $2 million dollars from them. In 2006, my parents pulled out a second mortgage from the bank to buy the laundromat, and after 5 years of running their business, their landlord illegally refused my parents' legal option to sell. After a 6-year-long court battle with their landlord, my parents lost brutally.

In 2018, my parents were forced to sell their home to pay back the bank for all the money they had pulled out to buy the laundromat. This forced them into a small, dark, one-bedroom apartment, where they lived together for the last 2 years of my dad's life. My mom is still here.

In 2020, my parents had to walk out of their dry cleaning business because they could no longer afford the exorbitant rent their landlord was charging. They were then taken to court by their landlord to pay $82,000+ in rental arrears. That court battle is still ongoing. My mom is currently unable to move because this lawsuit is on her record — it shows up every time the realtors do a background check. But she also has no consistent income or large amount of savings.

For the last 3 years, my parents were paying their rent with my dad's disability funds or COVID-19 relief funds. They were on food stamps for the first time in their lives. My mom is unable to support herself right now, as she has been my dad's primary caregiver throughout his entire cancer battle. Greg and I have put our lives on hold to take care of my dad since July 1, 2020, as well.

No one should have to go through cancer, poverty, death, and grief, all at the same time.

Please support us during this incredibly vulnerable time. Please help us lay my dad to rest.

With love,

Jieun, Greg, and 엄마