What Surviving Cancer at Age Four Taught Me

The headaches began a week before diagnosis. I’d had migraines as a toddler, but these were worse – and each night, the fevers were brutal. I’m talking windburn bad, 104 degrees, the kind that full-strength Advil didn’t touch. Then my little stomach started to swell. I was four years old then, in the spring of 2011. My extended family had flown in to New York City from Lebanon for a wedding. It was my mom’s dad who first took note of my belly and insisted I get it checked. My pediatrician got me an appointment at Memorial Sloan Kettering, the top hospital in New York for cancer treatment. There, the doctors ran me through scans. They found a tumor the size of a grapefruit on my kidney. It was so big, in fact, that it had broken in two, shoving the other half down to my pelvis. It would be a week before their specialists diagnosed Wilms tumor, a very rare cancer that mostly targets children under the age of five.

I was admitted that night to MSK. Doctors rushed to reduce the swelling on my kidney, draining fluid dumped by the tumor. When the diagnosis came in, I started chemo treatments; six weeks, they hoped, would shrink the kidney tumor so it could be excised safely in surgery. Nurses attached me to a walking pole with bags of tumor-fighting chemicals coursing through me. With kids my age, they usually start at low-dose amounts — say, three on a scale of 10. But because that tumor had burst, they upped the dosage to levels meant for grown-ups. My hair fell out, my mouth filled with sores, and the overnight fevers were outrageous. There were days I was too crushed to move or eat: They’d send in the candy cart to bribe me. My dad would walk in and find me staring at the ceiling, ignoring some Disney movie. I missed my friends dearly, worried they’d forget me, and despised the pills and fluids forced upon me.

Then, two weeks into my pre-op ordeal, a teenaged redhead came into my room. She was petite and pretty, a bright burst of color in that otherwise colorless ward. She said her name was Leslie, and that she was there to be my coach. She led me down the hall to a glassed-in space that served as the ward’s art and play room. There, we spent hours in our Girls Club for two, making up Harry Potter scripts in which I was Luna Lovegood on a broomstick. On good days, we’d put on Taylor Swift tracks and I’d show her how to shake it off. With Leslie, I was the little Dance Mom from hell, bullying her to get her moves right. Leslie played along, pretending to be a klutz who liked being harshed by a pre-school kid.

I didn’t know it then, but bossing her around gave me relief from the pain. The tumor in my kidney was pressing my diaphragm, making it a struggle to breathe. Each morning, a nurse came in and had me blow through a tube, an exercise to stretch my lungs. But it hurt like hell and I dug my heels in, refusing to go along. Leslie intervened, said that exercise was stupid and that we should paint instead. On the spot, she invented a game for us, blowing paint through a straw to make a picture. Then she handed the paint-straw to me. Blowing through it, I doodled a picture of a dog — and had big fun stretching my lungs.

Fourteen years later, I’m rereading these words on the eve of my high school graduation. I’m 17 and healthy, a girl with a full life and a heart flush with feelings to sort through. There’s the usual joy and sadness of the hour, that sense of finality you share with your friends after years of being everything to each other. But for me, there’s an extra layer of gratitude and guilt: I’ve no idea how to thank the people who literally saved my life.

There are the doctors at Sloan-Kettering, experts in rare cancers, who cracked the code of my early-onset tumors. There are the nurses who took me on lazy-day walks and sat with me on particularly grueling nights. And there are the hundreds of strangers who became my friends at a fund called Cycle for Survival. It’s a nonprofit founded by Dave and Jennifer Linn while Jennifer was being treated at MSK. She had an ultra-rare cancer called MFH Sarcoma that would sadly take her life in 2011. The fund she co-founded raises tens of millions of dollars a year for the study and treatment of rare cancers. It hosts spin-cycle weekends in the 50 states: marathon sessions, morning to night, that double as disco infernos. Every March, the party comes to New York. For three days, we fill the floor of a Manhattan gym with spin teams, loved ones, and hype men. There, we pedal our hearts out while dancing to bangers by Bon Jovi, Gaga, and ABBA. It’s both a glorious celebration of our collective survival, and the capstone to CFS’ fundraising year. 

Last year, CFS took in $34 million. Every dime of that money went to MSK to solve rare cancers like mine. Back then, the survival rate for Wilms tumor was roughly 40 percent. These days, thanks in large part to CFS’s donations — $412 million, and counting! — Sloan-Kettering has improved that rate to 90 percent. To repay CFS in some small way, I brought my first group of riders/donors to their New York event when I was just five years old. We entered under the banner of Noor’s Army; there were 10 of us that year, and their  “general” — me — was too small to be allowed on a bike. 

Next week, I’ll attend a second graduation: the hundreds of 18-year-olds who were treated at Sloan-Kettering and who will be honored in caps and gowns at their research center. I’ve been chosen to give a speech at the ceremony, and I have some remarks in mind. I’ll thank the nurses who dressed up as clowns and danced for me before radiation. I’ll thank the young staffers in the IV room who’d count backwards from 10 during blood draws, then send me away with a Hello Kitty Band-Aid. But most of all, I’ll give thanks to Leslie, who turned every tough moment into a children’s book: a brightly colored tale about an overcoming hero who lives happily ever after the cancer’s beaten.

On my worst days of treatment, when the cramps and the chemo broke me down, I’d watch the Disney Channel with Leslie while we painted our nails Theater-Kid Pink. When they made me gargle Bactrim, she’d fetch a chocolate pudding to wash the vile stuff down. Same thing with feelings: Everything I didn’t want to saddle my mom with, I could say to Leslie. But I also raved to her about Zayn Malik, my One Direction prince. In my four-year-old brain, we were perfect for each other, and never mind the 15-year age gap. I’d tell her he was my boyfriend, only he didn’t know it yet. She’d wink and put her finger to her lips, trying, she said, to keep it out of the tabloids. “When he meets you,” she’d whisper, “he won’t even see those other girls.”

After weeks of chemo, the tumor on my kidney shrank to the point it could be removed. But by then, it had damaged the kidney enough that the organ had to go with it. I went in for surgery in May of 2012 – and woke up two days later unable to move. My parents tried to get me up on my feet, but I was too weak to try. A day or two later, Leslie came in and played the “Bananas” song by Fresh Beat Band. She coaxed me out of bed, whisked me to my feet, and waltzed me down the hall as she went backwards. Days later, my muscles remembered how to move, and I managed to walk on my own. 

Alas, I had 18 rounds of chemo left to endure. And so Leslie made a calendar of those weekly chemo sessions, dubbed those rounds “baddies,” and renamed me Warrior Noor. Together, we made up stories about Warrior Noor: She was 10 times my size, sported a huge mane of hair, and roamed Central Park slaying the baddies. Spring turned to summer; I was in and out of the hospital, yearning to be done with chemical poison. But Leslie kept me sane through those last months of chemo, staging karaoke contests with fake mikes. I loved her dearly, but her renditions of Taylor Swift songs would’ve gotten her bounced by Simon Cowell. 

Finally, the day when the last baddie fell: My last round of chemo was done. For months, I’d been pining for my favorite meal — the famous mac-and-cheese bowl at Serendipity. My parents swung by to take me there; Leslie came in to hug me hard. “Don’t forget to text me when you’re out with Zayn,” she said. “And say hi to the rest of Noor’s Army for me. Maybe next year, I’ll come ride with you guys.”

On a gorgeous day in March, I got back in the saddle at this year’s Cycle for Survival. I had the wind in my sails and 30 friends beside me: We took up the first two rows at Equinox. It was my 13th year at the New York CFS, and my last there for a while: I’m moving away to college in the fall. Over the years, I’ve built Noor’s Army from a tiny band of riders into a hundreds-strong village of backers. If CFS saved my life — and it did — that army’s gone on to save other kids, raising almost $2 million for research. As I pedaled, I found myself pushing against feelings. Pride at being the girl once in need of help who grew up to be the girl giving help. Kinship with the big, extended family in that room — not just my parents and the friends on those bikes, but the teams of riders five, 10 rows behind us. And then there was a feeling that had no name: a big ball of gratitude and love. Those people at CFS — known and unknown — had inspired me to take something private and painful and turn it into public power. 

Five years ago, as I was leaving middle school, I decided to tell my story. I was 12, the age when secrets get hard to keep, and sensed that if I didn’t own my story, others would own it for me. As a freshman in high school, I sent an email blast to the entire student body. It began with an account of my cancer ordeal — then cut to a link for my school club, Challenge Cancer. I’d written it over and over, but was still in shambles when I finally hit send. I was so afraid to be whispered about at school, the kid getting glances in the hall. Instead, I was flooded with donations and hugs; that declaration became my calling card. I joined the Student Board at Memorial Sloan-Kettering, working with high school kids to raise money for rare cancer research. And at 15, I created a podcast series: Beyond the Battlefront.

Recently, I interviewed Michael Strahan’s daughter Isabella, who’d been buoyed by her older sister in college through her famous bout with cancer. I also did an episode with my mom’s best friend, an executive who nursed her husband through lymphoma, only to lose him at 44. Instead of being shattered, though, she rippled with strength: Her intense connection with her teenage daughter pulled both of them from the brink. Talking to those women, it dawned on me. They’d found in each other their nick-of-time version of Leslie: the angel who appears in darkness to flood the room with light, and with life.