Miriam Sultan Laine's courageous story of fighting Chronic Myeloid Leukemia

A dynamic group of young professionals have come together again this year to carry on the Taste for Life torch. Set for  June 18  (7 p.m.)at Espace Reunion (6600 Hutchison), this annual Israel Cancer Research Fund (ICRF) New Leadership  Division event is being chaired by Randall Ettinger and Lauren Pekofsky and brings a foodie’s dream dining destinations together under one roof for a memorable event, and for a great cause. Participating restaurants will offer some of their hottest dishes to satisfy all tastes, including a few kosher options and returning favourites from last year.

This year’s list is still growing, and it’s all included in the ticket price. On board this year: Cartel; Crudessence; Dolcetto & Co.; Inferno; Le Boucan; Les Caprices de Dahlia; Lester’s Deli; Moishe’s; Namos; Ryu Tapas Bar; Satay Brothers; TCBY; and more. Food is far from the only attraction. DJ Tiguru will be gracing the room with sweet sounds, and there will be full bar service led by mixologist Brahm Mauer who will be preparing a surprise summer drink. The silent auction offers gift certificates to restaurants including Milos and Bice; a membership to Blackout Fitness valued at $1800; a painting valued at $1500; and many more!

Miriam Sultan Laine is this year’s honouree. Diagnosed at age 14 with Chronic Myeloid Leukemia (CML), the Snowdon resident  was one of only a handful of children in North America who shared the same diagnosis. Over the years, innovations in cancer research – including those that were made possible by ICRF research project grants – have led to the development of ground-breaking cancer fighting drugs and novel bone marrow transplant methods that she and countless others have benefitted from. Today,   Sultan Laine is

working towards her degree in social work, and married with a beautiful daughter. 

Here is a copy of a story she wrote for a Chabad magazine, which she shared with me:

 Slowly, clearly, the doctor gave us all the facts. Chronic myeloid leukemia (CML) is a cancer of the white blood cells, he told us. It rarely affects children; in fact, I had the dubious distinction of being one of three children in all of North America who suffered from it. My doctor would consult with other specialists and devise an experimental treatment plan. It wouldn’t be straightforward, and there was a strong chance I would need a bone-marrow transplant somewhere along the line, he told me. We would meet again the next morning, to begin chemotherapy.

Chemotherapy was tough. The drugs ravaged my body. I was sick—a deep nausea that began deep in my belly and swelled through me. After each shot, I would shake uncontrollably. My mother would lie down beside me and wrap her arms around me, holding me tight until the pressure and the warmth of her body eased the spasms.

Worst of all, the chemo didn’t help. We switched drugs, amended treatment plans, but my body didn’t respond. The doctors shifted gears and began preparing for a bone-marrow transplant. It was my only hope.

Around the world, Psalms were said for me, 24 hours a dayStill, I never thought, I’m not going to survive this. I just thought, I have to get through this. After all, I was 14 years old. I had plans. I had to graduate high school, go to seminary, get married. My parents made a conscious decision to go public about my situation, and the result was a tidal wave of love, support and prayer from the entire Jewish world. I was supported by the wonderful staff of the Ohr Meir Foundation, and an organization called Hands On for Children hooked me up with a school in Boro Park, which sent me cards and pictures, letters and albums. I was showered with support—and distraction, too, which helped keep my spirits buoyed.

At one point, I questioned my parents’ decision. I knew people who hid even minor medical issues. To go public was revolutionary, iconoclastic. Why did they do it?

My mother’s answer was simple, and it typified her rock-solid faith. “I want their prayers,” she told me. I nodded, suddenly proud of her. And she was right—people prayed. Around the world, Psalms were said for me, 24 hours a day. My principal, Rabbi Aisenstark, organized a round-the-clock Psalms vigil. “If you can get up at 3 AM to go on a field trip, you can get up at 3 AM to say Psalms for Miriam,” he told the entire school.

To this day, I can’t fathom how many millions of prayers were said for me in those dark days. Neither can I fathom the result of those prayers: I was lifted upon their wings and carried from treatment to surgery, from surgery to remission, from hope to despair to hope once more.

As summer approached, a representative of Chai Lifeline, an organization that helps families and children with cancer, persuaded my parents to send me to Camp Simcha, a camp for kids with serious illnesses. Camp Simcha saved my life. For the first time, I met kids like me who had been through chemo, surgery, transplants—fellow fighters all. There, I finally lost my hair. As if it were the most normal thing in the world, my friend simply took a broom and a dustpan, and kept sweeping away those deep brown locks as they fell from my head. We sang, danced, and I was so happy, that I didn’t realize my condition was rapidly deteriorating. On my return, I was taken directly to the Montreal Children’s Hospital to receive my bone-marrow transplant.

Away at camp, I wasn’t witness to the multitude of medical, technical and legal hoops through which my parents jumped to make the transplant happen. Miraculously, two of my sisters—my married sister Guila, and my eight-year-old sister, Leah—were exact matches. Leah was chosen to donate.

In preparation for the transplant, I had to undergo full-body radiation and chemotherapy to kill all the cancerous cells. I was in strict isolation—my mother was allowed in the room, but my siblings, relatives and friends could only wave through a glass window and talk through the intercom. I affixed a huge poster of my Camp Simcha bunk to the wall opposite my bed. These were my friends—they had survived. Despite my bald head, yellow skin and overwhelming weakness, I would survive, too.

Despite my bald head, yellow skin and overwhelming weakness, I would surviveI still remember the day the doctor walked into my room with a printout of my blood work. Zero, zero, zero, zero, I read on the paper. The figures boggled my mind. In preparation for my transplant, they had destroyed my blood cells. All of them. I was a living corpse.

I received the bone marrow intravenously; it didn’t look any different from a regular blood transfusion. “How does the bone marrow know where to go?” I asked my doctor. I imagined the cells circulating around my system, without ever finding their way to the inside of my bone. “They just do,” he replied. Though the doctor took it for granted, I was astounded. What a miracle! That the cells gravitate to where they’re needed, that they can adopt my body as their new home and then create and infuse my body with healthy blood—it was the vinegar burning bright and clean.

For five weeks after the transplant, I was a caged bird. I sat in my room, staring down at the street below. I wonder if any of the passersby ever looked up and saw the little bald girl watching them, wishing she could be part of a humdrum existence. You can walk! I wanted to yell through the glass. You can talk! You’re a part of the world! Appreciate it!

My naturally feisty nature pushed me toward recovery, and I decided that I would spend Yom Kippur at home with my family. On the eve of Yom Kippur, when my mother went home for an hour to cook, I prepared to leave. I took down my poster, packed, dressed, and sat, waiting.

The doctor laughed when he saw me. I was only five weeks post transplant, and I was expected to stay for between two and three months. A few hours later, he came running into my room with the latest blood results. The transplanted marrow had engrafted, and my blood counts were at a safe level. I could return home.

Just a few hours before Yom Kippur, I opened the door of my isolation room and pushed myself out in my wheelchair. Everyone cheered—and gaped. The nurses had never seen a transplant patient push her own wheelchair home.

I spent the next nine months in home isolation, and my mother, a talented artist, helped me create a magnificent sculptured painting. I would hang it in my future home, I decided as I worked. Was I naive? Or did I simply refuse to recognize the difference between oil and vinegar? I still don’t know, but then, riding on the crest of recovery, I had no idea what lay in store.

Riding on the crest of recovery, I had no idea what lay in storeI graduated school, went to seminary, and met the man I wanted to marry. We just had to meet each other’s families, and we would announce our engagement. I was standing at the threshold of my dreams.

I flew home from a vacation in Israel on a Thursday, and on Friday morning I had a routine appointment. The oncologist on call took a blood test, and she came back, white-faced. As I looked at her face, something inside me froze. I began to shake.

The cancer, she told me, had returned.

No! No! I was just about to get engaged. I was waiting to step into my future. How? How could it have happened? Why was G‑d doing this to me? What did He want from me?

I sat down, reeling from the shock, the horror. It was a mistake, it was a lab error, it was . . .

It was true.

I called up Zev, my soon-to-be groom, and I cried down the phone. He got into a car and drove seven hours straight, from New York to Montreal. Never once thinking of himself, he was there for me—listening, crying with me, talking, supporting me as I tried to process the fact that once again my life was in question.

I couldn’t bring myself to tell my parents. I knew that when I told them, I’d have to play strong, and I was too raw, too broken. Thus, I re-entered the isolation ward for one more Shabbat—I played along with the charade of meals and Shabbat songs, while hermetically sealing my emotions in a place that no one could enter.

By Sunday, I felt strong enough to tell them.

They cried.

Monday morning found us back at the Montreal Children’s Hospital. The oncologist was not hopeful. The only option, he told me, was another bone-marrow transplant.

I shook my head.

My parents and Zev looked at me in shock. What was this? How could I refuse the only lifeline I was offered? But I knew myself, my strengths and my weaknesses. Some instinct told me that my body wasn’t strong enough to take another transplant. The radiation and chemo would kill me. We returned home, wondering if this was it. Was I slowly walking to the end?

Zev returned to New York, and for the next four days he didn’t eat or sleep. He found doctors, opinions, information, trials, experimental drugs. He was determined to find some ray of hope, some new treatment, something, anything.

A year later, in an explosion of joy and music, Zev and I stood side by side under the chuppah, our marriage canopyFour days later he returned to Montreal, with a stack of new studies, doctors’ phone numbers, and the name of a brand new drug, that just that month had begun trials in New York. At the time the drug was identified as STI‑571 (later it was called imatinib, and sold as Gleevec), and it was an innovative chemotherapy targeting the specific abnormal protein found in CML cells. The drug wouldn’t cure the cancer, but it would inhibit the growth of cancer cells and allow me to live a normal life. The drug had not yet come to Canada, and it required tremendous help from Above to organize my being the first-ever Canadian patient to be involved, long-distance, in the drug trial.

The drug did its work. My condition stabilized. The timing, the incredible scientific knowledge and knowhow it took to develop the drug, Zev’s involvement . . . all melded together for one purpose—to grant me life. A year later, in an explosion of joy and music, Zev and I stood side by side under the chuppah, our marriage canopy.

Before we married, we talked about having children; after my having undergone full-body radiation, the odds were stacked against us. But I wasn’t concerned. I had an inner conviction that I would have children, and I just went right back to the vinegar-oil principle. When a wick floating on golden oil burns, we say it’s nature. But who decreed that oil would have the properties that make it burn? G‑d. The same G‑d could make vinegar burn, if He so willed.

G‑d had split the sea for me so many times. Was it so different to ask Him for a child? After all, every child is a miracle.

When a fertility organization that worked according to Jewish law visited Montreal a year or two later, Zev and I went to see the specialist. He shook his head. There was nothing he could do for us.

I was crushed, but I was angry, too. How could a G‑d-fearing man ever say that he didn’t think we could have children? But the years that followed seemed to prove him right. We visited the most eminent specialists in the field; we spent tens of thousands of dollars on treatment. Nothing.

In the meantime, I went back to school. I completed a BA in liberal arts, and then moved on to study psychology and social work. Someday, I told myself, I would tell my children that when things didn’t go as I planned, I made the most of that time. Still, when Zev came back from synagogue with tears in his eyes, it cut me like a knife. How he longed to have a child of his own to bring under his tallit during the priestly blessing, to lift high on his shoulders and dance with on Simchat Torah.

Two years later, I scheduled another appointment with my fertility specialist. “I’m happy, I’m fulfilled,” I told him, “but I want to know if anything’s changed.” The doctor ran tests, and he delivered the results with a shake of his head. “Go home, Miriam,” he told me. “There’s almost zero chance of you ever having a child.”

Once again, my hopes were cruelly dashed. I called up my naturopath and told her what had happened. She was unperturbed. “Miriam, your doctor has just challenged G‑d.”

“My doctor has just extinguished my hope,” I countered.

“No,” she said. “Don’t give up hope. Now we’re going to see a miracle.”

“Go home, Miriam,” he told me. “There’s almost zero chance of you ever having a child.”Zev and I went on vacation soon after that—it was just before exams, and I was thankful for a break, even though I wasn’t feeling good. When we got back, I went straight to the naturopath. I was sick, really sick, I suspected, and I was looking for reassurance and comfort.

“I think you might be pregnant,” she said. I took a home test, and then a blood test, and—while my heart was palpitating, and I was more scared than I had ever been in my life—a light entered Zev’s eyes and lit up his whole face. Our incredulous doctor confirmed: we were going to be parents.

But . . . there were so many buts. What about the chemo? What about the baby? What about me? My oncologist was scared. I was cramping. I didn’t want to continue taking the Gleevec. Was it safe? Were there trials? Would my oncologist work with me? Questions, a whirling flurry of questions and doubts and fears and euphoria. And above it all boomed the voice of my fertility specialist. “This is G‑d’s miracle.”

The premier oncologist who had created Gleevec, and the head oncologist at Memorial Sloan-Kettering Cancer Center (who had treated me in Camp Simcha), agreed to work with me. I flew to New York every two weeks to have my blood checked and my situation assessed. I begged G‑d to take care of me. I surrendered myself into His loving arms, and I asked Him to carry me. And He did.

For the first five months of the pregnancy, my blood work was stable, and the doctors hesitantly agreed that I could stay off Gleevec. I spent time cultivating a vegetable garden—feeling the soil between my fingers, smelling the fresh scent and watching the seedlings develop and grow. The process mirrored what was happening in my body, making it real and alive, and connecting me with the cosmic process of birth.

When I was five months pregnant, I relapsed. I needed to go back on chemo, but I resisted—what would the powerful drugs do to the fragile life growing inside me? The pressure and tension were crushing. Again, I asked G‑d for help. I spoke to Him in my own words, the way I’d talk to my closest friends, with an intensity that stemmed from the knowledge that only He could get me through this. Two weeks later, back in New York for more blood work, the level of cancerous cells had dropped. For the rest of the pregnancy, the level of cancer cells vacillated, but I managed to avoid chemotherapy.

Zev, Miriam and Chana (Natacha Silber Photography)

After eight years of waiting, I held a baby in my arms. Five weeks before my due date, I was in New York for the unveiling of a dear departed friend’s stone, when my waters broke. Zev was in Montreal, I was away from home, and it wasn’t safe to attempt the journey back. Once again, I begged G‑d to be by my side. He was. My sister-in-law, who doubled as my doula, located a midwife, and I had a home birth with no medical intervention. After eight years of waiting, I held a baby in my arms. Our daughter, Chana, was born in a moment rich with love and gratitude and wonder.

Choosing a name was easy. Chana, the mother of the biblical Samuel, was the woman who taught us to cry when we pray. Our Chana had taught me the same lesson. In addition, Chana was the name of the mother of the Lubavitcher Rebbe. Amazingly, I was able to stay off Gleevec long enough to nurse Chana for a full three months.

Today Chana brings such a piquant sweetness to our lives that while the shadows, when they come, seem a darker shade of gray, the sun is brighter and the world shimmers with color. Cancer and chemo have become a part of me, and I have adjusted in the same way one might adjust to a limp—at first rebelling and denying the disability, and eventually learning to pace myself and live with it.

There are times when I feel tearful and anxious. Recently, when Chana was two, I had such a moment. My body became immune to Gleevec, and I was once again face to face with my fears. I was feeling good, and I had been taking Gleevec for over a decade. To be told that it was no longer effective was devastating. Thank G‑d, by that time sister drugs had been developed that combat the cancerous cells.

Living with cancer is to live with uncertainty, but every person who walks this earth lives in the shadow of death—some are more aware of it than others. Of course I’m afraid, but life has taught me its natural rhythm—anxiety and sadness are invariably followed by joy, hope. I’m humbler now; my life follows G‑d’s plan, and any agenda I might dream up is laughable.

Most importantly, I’ve learned to appreciate G‑d’s miracles, both the glow of oil and the flame burning clear and clean in a gob

Visit the ICRF website to make donations or purchase tickets. Corporate ticket packages are available. The proceeds from ticket sales, the silent auction and donations will go toward a research project grant with a focus on blood cancers affecting children and young adults.

The  New Leadership Division of ICRF includes dedicated young professionals in Montreal between the ages of 25 to 40. They lend their time and efforts on a volunteer basis to help find a cure for cancer. They have established their contribution to Montreal’s non-profit

community through annual events that are consistently sold out, raising significant funds toward finding a cure.