The Essence of Natasha

When Natasha passed away, I wrote the most important speech I will ever write. I wanted to capture the essence of my firstborn who had taught me to love without limits. I also wanted to be sure that Natasha would not be defined by her illness. Natasha had been fragile for the last 27 months of her life, but for most of her life she was a vivacious, rambunctious child. I wanted those who cared about her to remember her not as a cancer patient, but as the girl with a boundless zest for life.

By Suzanne Leigh

Many of us here might only remember Natasha as a frail child. We wanted to tell you about Natasha before a devastating disease took its toll on her body. Natasha was a vibrant, energetic kid who relished life … whose life was so exciting that sometimes it required two parents and at least four limbs to get Natasha from bouncing on her bed at 10 p.m. to a 180 degree angle, suitable for sleeping.

Natasha was a monkey bar maestro, a champion tree-climber and a cartwheel queen. She broke her arm in first grade by attempting a flying somersault from the living room couch. She never walked down the street, she sprinted or skipped. She was a speed freak who liked to bike and scooter and would get back in the saddle whenever she fell off.

She had a lively sense of humor, a hearty laugh and was a gifted mimic. She never met anyone she didn’t like and perhaps because of that, everyone liked Natasha.

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On Jan. 17, 2008 we found out that Natasha had a malignant brain tumor. There are about 120 types of brain tumors and the one that Natasha had strikes about 200 children in the United States each year.  Of those children, about 60 to 70 percent will survive five years or more. Natasha almost reached that five-year survival landmark.

Natasha underwent a total resection of her tumor, but not without multiple complications. She then went through six weeks of radiation and four months of chemo. Natasha was very sick multiple times. She lost every hair on her head, every eyelash. Her olive skin turned ashen. Her weight plummeted and her clothes sagged. But her spirit triumphed. She remained Natasha: the girl with the bright eyes and love for the ridiculous.

Reflecting at the end of 2008, we asked Natasha what had been the most challenging episode of that year. Was it the weeks when she was inpatient while her body battled infections due to a depleted immune system? Or was it the horror of going to the bowels of the hospital every day for six weeks where she would lie alone on a cold gurney while beams of intense light would strike the area of the brain that had been affected?

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Neither, of course. It was the day that our cat died. Like many gentle people — and Natasha was very gentle — she loved animals and she had a unique empathy for any creature with four legs. One of Natasha’s proudest achievements was volunteering at the SPCA and rescuing a litter of newborn kittens and their feral mom. Natasha and her sister Marissa tended to those kittens with the utmost dedication.

After treatment Natasha’s life returned to a kind of normal. She excelled at school, was an enthusiastic swimmer, runner and hip-hop dancer and loved to do art projects or rough and tumble with Marissa and her many friends. At times we had to ask ourselves: Did this kid ever really have a brain tumor?

But we knew that malignant brain tumors, even those that have been successfully treated like Natasha’s, can come back to bite. And in August 2010, a routine MRI found that the beast had come back, this time in multiple spots, a hallmark that bodes poorly for long-term survival.

There was another surgery — this one took longer to recover from —  and more radiation. This time Natasha’s entire brain and spine were irradiated. She had re-grown her hair after chemo –- now a wavy, shoulder-length golden brown –- and knew she would lose it all again at a time when girls her age were starting to pay more attention to their appearance. Natasha changed. The outgoing daredevil became cautious and preferred never to be too far from her parents.  Her voice was softer, her laughter less raucous and her manner more reserved.

But she remained our dazzling girl. Because Natasha’s essence never changed.

To Natasha, no kind deed, personal misfortune, holiday or birthday of a loved one would ever go unacknowledged without a beautiful card.  Beloved teachers, BFFs and family received cards with heartfelt messages and unique artwork. “Thank you for being my best friend,” she wrote to me in one impromptu card. “When I need a shot you’re right beside me ready to squeeze my hand. You understand my energy is low, and don’t run ahead of me, leaving me behind.”

“I am so proud to be your daughter,” she wrote to her dad in a Father’s Day card. “I always miss you when you’re at work and think of all the great memories we’ve shared.”

And to her sister Marissa on her last birthday, Natasha wrote: “You’re the best sister because you care about your family and are nice to everyone. You’re full of spirit, you’re almost always in a good mood and you’ve got a beautiful, big smile.” (By the way, Natasha was right.)

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There was a special bond between the two sisters. Before Marissa’s arrival, Natasha had two highly devoted parents available to accommodate every reasonable request (and even some not-so reasonable ones). She was rocked to sleep, carried in her parents’ arms even when I was 9 months pregnant and rarely left with a sitter. So when Marissa was born, I was careful to follow the advice of friends with more than one child: Do not hold the new baby when big sister gets to meet her for the first time. So I settled Marissa in her hospital crib and greeted Natasha from preschool with outstretched arms.

But Natasha bypassed the outstretched arms and zipped over to the crib. She gazed at the new family member with utter approval. “Hmm,” she said with satisfaction. It seemed that Marissa had made the grade.

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It is a cliché that young cancer patients are brave, because they don’t get to choose when it comes to treatment. But we witnessed Natasha’s courage, especially in those last months of her life when she trudged to the hospital with quiet grace for labs, blood transfusions, ultrasounds, CT scans, MRIs, bone marrow aspirations and yet more surgeries.

She was always impeccably polite. Like many children undergoing cancer treatment, Natasha’s veins had been battered by numerous blood draws. She had a single bruised vein that served for weekly labs. She never failed to thank the phlebotomist. And as Natasha’s medication schedule became more complex, eventually including about 50 pills a day and a nightly shot, she would still thank us for administering her treatment.

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We learned from Natasha. We learned that “thank you” and “you’re welcome” were always worth saying. We learned to be more gracious and forgiving by following her lead. Natasha was often disappointed, but we discovered that if you give people a second or even a third chance, they might surprise you. And we learned that while many adults considered childhood cancers to be a taboo subject, Natasha did not.

In 2011, when Natasha was very sick, I started to do classroom presentations on childhood cancers. I  spoke of the need to support kids who might look different as a result of chemo or radiation or steroid therapy, which can cause bloating in the face and abdomen. I talked to kids about what they could do to help reduce their own chances of getting an adult cancer, such as by choosing not to smoke, using sunblock and eating a healthy diet and exercising. Natasha made it very clear that she wanted to be part of these presentations, and she stood up and shared her personal story in front of four classes. We are so proud of you for doing this, Natasha.

We would also like to pay tribute to another of Natasha’s traits: she was in tune with other children who were fragile. She sensed that they suffered, too, and tried to reach them.

I was lucky enough to make friends with a mother in Sydney, Australia, whose daughter Sophie was about the same age as Natasha and had the same tumor type. A transcontinental friendship developed between the two girls.

“Are you scared of chemo?” asked Natasha in an e-mail. “If you are, I know how you feel and you can discuss it with me. Good luck, Sophie!”

Later Sophie had a tumor recurrence and Natasha wrote to her with advice:  “Things that could help you through this are drawing, e-mailing friends, writing a book and spending time with a pet,” she said.

“You made some really good suggestions,” said Sophie. “I will e-mail you after my operation.”

Sophie passed away less than three months later, 17 months before Natasha.

We don’t know for sure what happens to us when we die, but we hope that the souls of these two fallen warriors have found each other.

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