How my 10-month-old daughter beat rare cancer -PHOTOS

Instead of planning her first birthday party, I thought about her funeral. And I began to imagine a life without her. Satya, the cherub-cheeked little lady we had brought into the world 10 months ago, had just been diagnosed with cancer.

It was Stage 1, she was well under 18 months old and otherwise healthy. As if “otherwise healthy” mattered, the facts were that an MRI showed a tumor sitting between her kidney and aorta, dangerously close to her heart. Our hearts.

Satya’s name came to me in a dream. When I woke up there was only one word on my lips (Satya is Sanskrit for truth). I knew her middle name would be Devi (Sanskrit for goddess) after my grandmother. Our daughter would be Satya Devi Singh, translated it means Truth Goddess Lion. Good luck keeping this kid down, I thought, as I traced the letters over and over on my pregnant belly.

Satya was supposed to arrive on December 17, 2013. Instead, she showed up on November 17, early, eager and incredibly tiny. Weighing in at just 5 pounds, she fought her way out, a gorgeous scrappy little thing, just bones, big, beautiful eyes and an impressive head of hair.

 

Turns out, it’s pretty incredible to be diagnosed with cancer at barely 10 months old. According to the National Cancer Institute of Health, childhood cancer is rare, although it is the leading cause of death by disease among American kids. The NCIH estimates that 15,780 kids ages 0 19 were diagnosed with cancer in 2014, with almost 2,000 children expected to die from the disease. And while the numbers of pediatric cancer survivors are expected to increase each year, losing even one kid to cancer is too much. And losing even one Satya wasn’t an option.

 

 

Her doctors were upbeat and reassuring, with their plush tiger stethoscopes and waiting rooms full of bald children and stoic parents who would rush to excuse themselves to the bathroom to break down, dissolving into tears before they could even shut the door. We were the lucky ones, with a diagnosis that probably just involved a couple of surgeries and would likely work out just fine. But not until the cancer threatened to kill our faith and take our confidence and our marriage as collateral.

We had been watching the mass for a few months — from June until September - and spent the summertime in an out of the hospital, ultrasounds and urine tests replacing the sun and sand I had planned for our family’s first summer together. Instead we swam in medical bills and specialist appointments. While my friends took their kids to the pool and complained about sleep training and nap schedules, my husband Agan and I were cradling our little girl before she was about to be anesthetized. Here we were, locked away on a pediatric oncology floor, my baby semi-conscious and facedown on a table for a bone marrow aspiration, while the Earth was continuing to spin for everyone else.

It didn’t start out this way. In fact, she was a perfect baby — mellow, smiling and sleeping through the night by three months old.But then at the end of May, I noticed Satya was a little off. There were no symptoms, no fever, vomiting or diarrhea. But an inner voice insisted she wasn’t OK and thankfully my pediatrician listened, telling me a mother’s intuition is stronger than doctors’ opinions. She ordered up a urine test. Three days later we rushed Satya to the ER.

After blood work, a urine catheter, the insertion of two IV ports and the usual blood pressure and temperature check, fiery Satya, clad in a worn yellow hospital gown, slumped in my arms. Trying to restrain her while she sputtered and screeched as the nurse catheterized her was unbearable. “Don’t worry, the red is just iodine,” the ER nurse assured me, motioning towards the scarlet spatter on the bleached hospital linens. I dry-heaved into the trash can.

The first time Satya sat up, it was in her hospital crib, wearing only a standard issue baby gown and an assortment of tubes, patches and IVs. Normally, it was the sort of milestone we would have captured with great fanfare. Instead, I quickly snapped a photo and moved on. My baby was due for surgery the next day — she had an infection that needed to be treated for a month with hardcore IV antibiotics — and it was hard to get excited about anything. And since keeping an IV port in her arm was out of the question, she needed a semi-permanent one surgically placed near her heart.

The hospital room was enormous, but too small for our big Indian family with their even bigger personalities, toting Tupperware containers of homemade food for the patient and her parents. We kept the news about Satya quiet by subcontinental standards, telling only both sets of parents, siblings, bosses and a small handful of close friends. My mom’s twin sister hopped on a 24-hour flight when she heard the news, vowing to sleep in the waiting room for the entire week, if that’s what it took.

The night before the surgery, Agan and I squeezed into the daybed together for awhile, layering our legs and arms so one of us didn’t fall off. We took turns crying, me first, then him. My tears came in uncontrollable fits, sputtering, shaking and heaving. Agan’s tears were measured, quiet and willful. I could see how exhausted he was taking care of Satya and me.

I was supposed to be the tough one, the one who fought with the insurance company, sweet-talked the receptionists for the better appointments and charmed the nurses and doctors with tales of editing gossip, entertainment and fashion stories. But when the lights went out, and it was just the three of us, there was only one tough guy in the room, and she had been asleep for hours.

I laid with Satya in the crib for the rest of that night. When it was time to head to the OR, the nurse asked about her damp hair. I blamed sweat and an early morning sponge bath. But we both knew her head was wet from my tears.

Agan and I walked alongside the rolling crib — we couldn’t carry her down due to hospital protocol — laughing and lying, telling our 7-month-old baby that she was off on an adventure with Dr. Fischer. He’s the kind of surgeon you want operating on your kid, his cocky confidence putting us both at ease.

“So how often do you do these procedures,” I asked. “This week?” he smiled. Handsome surgeons can get away with a lot.

And so we did the only thing we could: We placed our trust in him and the Universe, knowing our daughter’s life sat in their hands. We waved, smiled and blew kisses as they wheeled her off to the OR. As she turned the corner, out of our sight, Agan and I collapsed in to each others arms.

The OR recovery room nurse ushered us into a private, all-white room with an oversized rocking arm chair, TV and sink. Another brought the baby in, cradling our woozy little nugget in her arms. Satya locked eyes with Agan and let out a horrific hoarse scream, weak with exhaustion, a clear complaint about what had just happened. The nurses left us alone, just the three of us, and we all squished into the armchair, Satya and I both in Agan’s lap.

A few days later, we settled in at home. Satya looked like a bionic baby, a port dangling from her chest, secured with Velcro fastenings, thick plastic dressings and surgical tape. Agan and I got the hang of administering the IV meds twice daily and were on high alert for infection, and under no circumstances could we let the insertion site get wet. That meant no baths, no swimming and no fun. And there was that lymph node, a surprising find during the renal ultrasound, just weird enough to have the infectious disease doctor and surgeon flag Dr. Harris, the pediatric oncologist.

In the meantime, another milestone — Satya started eating cookies. And Indian food. By mid-July, the infection had cleared, but the lymph node was still hanging around. For a little break, the three of us headed to California to visit Agan’s parents and watch Satya’s godparents get married. The whole thing was still a giant exhausting secret. We spent the week in the happy California sunshine pretending that everything was OK, hoping that the West Coast air and my mother-in-law’s home-cooked meals would heal us. I was done with perfect, I just wanted normal.

In late August, the team of doctors ordered up an MRI which meant Satya needed to be anesthetized. Again. By the time the test was over, the surgeon, oncologist and radiologist had gathered. I gripped the crib for support, determined not to make a scene. The lymph node was likely a neuroblastoma, a tumor that could grow, take over her whole body and kill her. The doctors never said cancer; I guess they didn’t have to.

The day of the second surgery, I struggled to choose what dress to put her in, the pink and white tutu or the chambray denim one, paired with a leopard cardigan. It mattered. Because even though I never admitted it, I was consumed with the thought of losing our daughter. Most days I was angry, irritable and impossible to be around, unsuccessfully trying to alienate Agan and my mom. They were so calm about everything, and I guess I resented their seemingly carefree approach.

I could see the cancer spreading to my marriage, choking the life out of a friendship that we’d never really had to work at before. Agan and I are a funny pair. We’re both loud and bossy, comfortable in charge and happy to be the center of attention. And, until Satya got sick, we didn’t spend a lot of time assessing the state of our union. The summer was tough on us both, being back at work meant we were away from her during the day, worrying, the cancer cloud looming above our heads. And while I gave fully to work, replacing the sadness with daily deadlines, I checked out of being Agan’s partner for a bit, throwing myself fully into mom and editor modes. It was a mistake that he’s forgiven me for, although I’ve yet to forgive myself.

As I packed her bags, this time around planning for at least a week in the hospital post-surgery, I imagined what the apartment would be like without her. She had nested everywhere, toys in various corners, garish colorful plastic chairs, swings and walkers a joyful eyesore against our modern space. I had taken so many pictures that summer, including at the hospital. I’d like to think it was because I was chronicling her journey, so I could show her teenage and 20-something self that she was a born fighter. But mostly I was scared that pictures were all I would have left.

Dr. Fischer was back for Round Two, this time a five-plus-hour surgery that wasn’t as casual as the last go. His partner would be in the OR, too, along with a team that included an anesthesiologist, nurses, residents and orderlies. The hope was that he could do the whole procedure laparoscopically — cracking, scraping and removing the peachpit-sized tumor through Satya’s belly button. This would mean minimal scarring and, as he joked, no visible marks for when she wanted to wear a bikini as a teenager. For a few minutes, I was lost in imagining the future.

 

The nurse said they would allow one of us into the operating room to drop Satya off; Agan gently rubbed my back and told me to go. I suited up for the sterile environment and cradled my daughter in the crook of my neck. I whispered a prayer to her, reminded her to channel Kali, the goddess that was protecting us, and walked her into the OR.

When Dr. Fischer emerged nearly six hours later, he looked like he had just come from battle. He was sweaty, exhausted and needed to sit and catch his breath before he could talk to us. He had waged war on my daughter’s body, meticulously searching out and killing every piece of the tumor he could find. He even brought pictures, although I’ve yet to look at them. Agan looked immediately. The surgery was a smashing success and every visible chunk of the tumor had been removed, without a single incision, and was off to the lab to be tested. He was sure it was cancer, though, and if it hadn’t spread anywhere else, she was on the mend.

Nothing prepared me for life on the pediatric oncology floor and the way it would change our lives. We had a sunny room with big windows. Next door was a bald, 15-month-old little guy fighting neuroblastoma with chemo. There was a little girl we met daily at the snack machine. She was there for Doritos, I was there to escape. She didn’t speak English, had tufts of hair missing and rode around the floor perched on her IV pole, as her mom pushed her around. Her face was bloated and blistered from the treatment and the nurses called her beautiful every time they saw her. She really was. The mom and her little girl made the rounds daily at least 15 or 20 times. Sometimes she stood on the IV pole, other times, when she was tired, she sat in a big plastic car.

One night, at around 3 a.m. or so I saw a mom standing near the door to her son’s room, hands over her face, clearly defeated by the day. I wanted to open the door and give her a hug, but a nurse, who knew exactly what I was about to do, ushered me back to my room. The next day, a man arrived in a prison jumpsuit, flanked by cops, his hands and feet in chains. I heard he was coming to say goodbye to his son.

Meanwhile, Satya was recovering quickly, although her kidney took a beating with all the poking, prodding and scraping and she wasn’t able to keep very much milk down. But by Day 3 her smile had returned. She sat up in bed and wanted to play with her toys and books. Slowly she was coming back to life.

Agan and I had taken significant time away from work and both our companies rallied behind us, giving us the time and support we needed to take care of our girl. Our friends and families lifted us up, too. My best friend and my goddaughter prayed nightly in Dubai. My pal Linda enlisted her meditation circle in the cause. Her friend Antonia, a fourth-generation Bulgarian healer, came to my apartment armed with eggs, sourdough balls, amulets and sage and healed my baby and cleansed our condo. My sister-in-law, a doctor, offered her opinion as an aunt, medical professional and friend around the clock. My editor lit candles at St. Patrick’s Cathedral. My friends Kathie Lee, Hoda and Christine prayed in their dressing room together before their morning show. And we had every God covered from the sweet elephant-headed one my parents prefer to Jesus, Allah, Buddha and the spirits in the Hudson River.

Before we could leave the hospital, Satya needed an MIBG, a three-day scan that would comb her body for any lurking neuroblastoma cells. It was the last step before she could be declared cancer-free. Each time we swaddled her — you have to lie very still for the scan to work, tightly binding her arms and legs to prevent any movement — she went nuts, violently shaking from side to side. I don’t know how it happened, but I unswaddled her, picked her up, lay on the radiology machine and placed her on top of my chest. I motioned to the technician to start the test, singing in her ear, channeling my heart energy to calm hers down. Hearing my song, my mother and her twin sister joined in. And as I sang to put my baby to bed, they sang back up to calm their daughter down. Within minutes, Satya and I were asleep. It sounds strange, but it was the most relaxed I had felt in months.

At the end of September, with the surgery and tests behind us, we took Satya on an interstate thank-you tour, spreading our gratitude to the people and various Gods who healed my daughter. Before her first birthday, Satya became a cancer survivor. Thank you Jesus! Thank you Waheguru! Thank you friends at the “Today” show! It was important to me that little Satya look the people and powers that helped her in the face and acknowledge that they helped her live.

I never understood what they meant when people said their diagnosis was a blessing. And among our many blessings, cancer doesn’t rate for me. But it’s clear that Satya was destined to shine a light on the families who are being ravaged by pediatric cancer. We met parents who quit their jobs because caring for an ailing kid on chemo wasn’t possible while working full time. A teenage girl in a headscarf at the clinic mentioned wanting some back-to-school clothes, yearning to return to teachers, books and tests. Others told me of their struggle with the healthy siblings, convinced that their sick brother or sister was somehow the favorite. We’ve spent a lot of time, as a family, finding ways to help them. That’s the part that’s too easy to forget. Cancer is complex, relentless and vicious, and these were all just kids.

Our wounds are still raw. A little cough or cold can send me into a dark spiral. I feel her belly constantly, petrified I’ll wake up one day and the tumor will have returned overnight. For a few months of her then-short life, I spent more time that I like to admit thinking my daughter was going to die. Sometimes when I’m on the train or out for a run, the feelings will rush back and the tears will flow for no particular reason. My daughter couldn’t be healthier: walking, talking and throwing full-blown toddler tantrums. Thankfully, she’ll never remember a thing.

But when people ask how my “little girl” is, I can’t help but think that she’s already a woman — fierce, strong and impressive, a witness to life’s complexities, and triumphant against all odds. I suppose in the end, it’s just like the Indian national motto says: Satyamev Jayate. The truth alone shall prevail.