A Sister's Heartbreaking Leap Day Suggestion and the Legacy of Love It Inspired
There exists perhaps only one scenario where suggesting what I was about to propose to my sister could be considered acceptable. I found myself in that exact, agonizing position as I settled into the chair beside her hospice bed.
"It's Rare Disease Day today," I told her, attempting to sound nonchalant.
My sister Kim opened her eyes and gave me a sideways glance. Among the many things we unequivocally agreed upon was that I am a terrible actor.
Despite this, I pressed on with feigned casualness. "I just didn't know if you realized it was a leap year—that today is Feb. 29," I said. I knew she had no clue, however. The opiates left her too clouded to be cognizant of dates.
I tried another approach. "Isn't it interesting that it will be four years before your boys have to wake up on a day... that is... Feb. 29?" The barely hidden agenda behind my questions was starting to sound ridiculous, so I felt relief when this remark finally captured Kim's attention.
She squinted her eyes open and studied my face. I looked back, trying to maintain an expression suggesting I merely found these leap year facts fascinating.
The Unspoken Suggestion
But she understood the real reason I was highlighting that another leap day was four years away.
"Are you suggesting I should try to die today?" she asked with genuine nonchalance.
"No!" I feigned offense, though we both knew it was exactly what I was doing. After a brief pause, I quietly added, "But... it would be a pretty poignant end to your story." Earlier that day, when my other sister Kathleen mentioned Feb. 29 is Rare Disease Day, we had both agreed it would be a fitting day for Kim to die.
It wasn't that we wanted our sister to die. Far from it. But her death wasn't a question of if, but when. We were, after all, having this conversation in a hospice center.
An Extraordinary Battle Against Rare Cancer
Kim was nearing the end of her eight-year battle against a combination of appendix and stomach cancers that afflict only 1 in 10 million people. She also had a Krukenberg tumor on her ovary—a cancer with a prognosis as frightening as its name, with average survival between three and ten months.
But Kim wasn't average. A month after her diagnosis at age 41, she underwent HIPEC surgery, so extreme it's called "the mother of all surgeries." Doctors opened her abdominal cavity, removed organs she could live without, then spent hours circulating heated chemotherapy fluids throughout her body.
Unwaveringly strong, Kim was determined to walk her eldest son to kindergarten one month later. She achieved this. A year later, she walked her younger son to kindergarten. Against all odds, she saw both boys off to junior high.
These momentous achievements didn't come without obstacles. Six years into remission, the cancer returned aggressively.
Kim and her husband traveled to a top cancer hospital in Texas, only to be sent home immediately. No research was being done on her incredibly rare cancer since it would benefit so few people. I believe that moment—when hope was stolen—was a turning point in her health.
The Final Chapter in Hospice
With no targeted treatments available, Kim's doctors tried existing chemotherapies designed for other cancers. None worked. They only weakened her further.
The sound of the morphine pump delivering doses every 15 minutes brought my attention back to the room. Given her steady painkiller stream and increasing mental cloudiness, I was amazed Kim had deciphered my Feb. 29 allusion.
The day before, Kim had inexplicably gotten out of bed to pack her suitcase, stating her pain was gone so she could go home. Explaining she couldn't leave—and why—was the hardest conversation of my life. I'll never forget her face when she remembered: "Oh right, I'm here to die," she said quietly, stopping her packing.
A labored cough from Kim got my attention. I dampened her cracking lips with a sponge. She rubbed them over the thin layer of ice water, then closed her eyes for a shallow breath. I leaned back, feeling both defeated and ashamed for my suggestion.
I was also frustrated we were still there. Kim's doctors had said once she stopped blood transfusions, she would pass in two or three days.
The Blood Transfusion Reality and a Promise
Not only had the chemotherapies failed, one triggered her body to relentlessly attack its own blood cells. Her medical team tried numerous procedures—including hooking her to a machine that removed and replaced all her blood—but nothing worked. Kim needed daily transfusions to stay alive.
It was then my family learned one-fourth of the U.S. blood supply is used by cancer patients. They rely on these donations to stay strong enough for treatments. I found it odd this fact wasn't common knowledge.
Around Kim's 40th transfusion, she told doctors, "Don't worry, we'll pay you back." They thought she was joking, but she wasn't. We planned a blood drive. Kim looked forward to attending and fulfilling her promise.
But while transfusions kept her alive, they didn't eliminate her exhaustion or ease her pain. Her body couldn't tolerate more treatment attempts. Kim made the devastating but understandable decision to discontinue them.
Birth of a Movement
Disappointed she couldn't attend the blood drive, Kim requested we ask people to donate blood instead of holding a wake or funeral. A week before the event, over 300 people had signed up. My family juggled Kim's care with media interviews about the drive. Kim had started a movement. We named it A Pint For Kim.
My humble sister immediately objected and demanded her name be removed. We vetoed her request. While refusing a dying wish might seem unkind, we knew hundreds were signing up because of Kim—because of how she treated people and approached life.
During her eight-year battle, none of us ever heard Kim complain, express anger, or ask "Why me?" Not once. After she passed, I found a journal in her nightstand. Written on the first page in her handwriting: "We are not here for ourselves. We are here to love and serve others."
Kim's inability to feel anger amazed me, especially since I felt furious so often at her life's end. The two or three days doctors predicted had come and gone. Kim was still taking strolls with her walker, requesting favorite fast food, and even suggesting I flirt with former baseball players visiting next door. She didn't seem like someone about to die. The situation felt like a cruel, heart-wrenching prank becoming increasingly unbearable.
The Prolonged Goodbye
We asked a hospice doctor why it was taking so long. He explained that aside from bone tumors and the irreversible blood cell attack, she was an otherwise healthy 49-year-old woman. The rest of her was strong: strong mind, strong lungs, a strong and deeply loving heart. He apologized for the initial misinformation.
In retrospect, I'm unsure if knowing it would take much longer would have made the process easier or harder. What I know is that watching the person you're closest to unhurriedly die over nearly two weeks is indescribably and devastatingly heartbreaking. Perhaps part of me wanted Kim to die that Feb. 29 because I couldn't bear more excruciating pain witnessing her slow departure.
I looked at Kim wearing a shirt that said NOPE, smiling at her strong will even as the end approached. She took another long inhale. This time, instead of exhaling, she spoke. "OK."
"OK what?" I asked.
"OK," she said, eyes still closed. "I'll try to die today."
The Final Moments and Lasting Legacy
Every muscle in my chest tightened, making breathing suddenly impossible. I had remained strong for the week in hospice, months at the hospital, and eight years of her graceful battle. But these six soft-spoken words completely broke me.
Determined not to let Kim hear me trying not to cry, I pressed my hand over my mouth and nose. By the time I composed myself, Kim was asleep again. I slipped out to the visitors' lounge where my family had set up a temporary home, watching other families rotate through while we waited for Kim's agonizingly long dying process to end.
I found Kathleen. "She said she'll try," I told her. Kathleen nodded, and we returned to Kim's room, diligent about ensuring she was never alone.
We sat in silence watching Kim sleep—something we'd grown accustomed to over four months. At 11:57 p.m., I didn't take my eyes off my phone until midnight. I softly cleared my throat to get Kathleen's attention, held up my phone, and whispered, "March 1." We shared a look of subtle disappointment. I shrugged and leaned back, hoping for sleep.
I didn't know then that our leap day conversation would be our very last. The next morning, Kim could barely stay conscious. By March 2, she no longer woke up. And on March 3, Kim left us—40 years too early, and three days too late.
Five days later, over five hundred people donated blood in Kim's memory, setting the Illinois state record for largest single-day single-location blood drive—a record A Pint For Kim has broken every year since. The movement continues to save lives, a testament to a sister's extraordinary love and resilience in the face of rare disease.
