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Lymphoma Survivor: ‘The World is so Kind’

Article date: April 29, 2014

Nina Louie

"Letting people into my private moments has truly helped. When I opened the door, the world embraced me and my struggle. It gave me so much strength and purpose in my pain. It was very inspiring and empowering."

 

By Stacy Simon

Going public with her lymphoma battle was not easy for Nina Polvanich Louie, 33. “As a cancer patient, I didn’t feel comfortable sharing my private, painful moments,” she said. But when doctors told Louie her best treatment option was a bone marrow transplant through a donor, she, her husband, and their friends decided they had to try to find a match. Louie said she could endure anything for the chance to see her son, then just 2 years old, grow up.

The Louies’ friends built a “Save Nina” website and shared it on Facebook – and it went viral. Family, friends, strangers, even celebrities began tweeting to urge people to register for the National Marrow Donor Program. New supporters took the campaign even further, to billboards in several cities across the country, including New York City’s Times Square. Within 3 or 4 months, 20,000 people had registered as donors for the national registry. “I think it’s just because the world is so kind,” said Louie. “People really want to help.”

But even from the beginning, Louie said, her doctors told her the drives were unlikely to help her find a bone marrow match. Louie is Asian, and most people in the registry are white. People with the same ethnic background are more likely to match. While Louie did not find a bone marrow donor, she did find a cord blood donor, her next-best option. She had a successful cord blood transplant in August 2013 and is recovering well.

“Letting people into my private moments has truly helped,” said Louie. “When I opened the door, the world embraced me and my struggle. It gave me so much strength and purpose in my pain. It was very inspiring and empowering.”

Initial diagnosis

Louie’s cancer journey began in August 2012 with excruciating back pain and a dry cough. An x-ray of her back and chest revealed a large mass pressing on her heart. Biopsies and a PET scan confirmed diffuse large B-cell lymphoma, a type of cancer that starts in white blood cells called lymphocytes, which are part of the body’s immune system.

Louie’s cancer was fast-growing. “The PET scan lit up like a Christmas tree,” she said. “It was all over my body – my spleen, liver, back, chest, everywhere.”

Louie began aggressive chemotherapy, and her body responded very well. She went into remission after 5 cycles and completed 7 in all. Though exhausted and weak from the treatments, she felt positive, and ready to move on with her life.

‘The worst moment of my life’

That feeling didn’t last long. At her first follow-up check, a routine PET scan led to a series of tests that found lymphoma in Louie’s brain and spine. “It was the worst moment of my life. I felt defeated,” said Louie.

This time, Louie had a harder time handling the chemo, which had to be given through painful lumbar punctures. She felt beaten down from the earlier chemo, and had headaches and back pain from the brain biopsy. But she was determined to endure any amount of pain to get through the treatments and survive.

“I felt like I could tolerate anything when I watched my son and looked into the eyes of my family. I imagined what it would be like for him to grow up without a mother. For the first time, I imagined death and realized it’s far more painful for the people you leave behind – your husband, son, parents, friends – and thought about what it would be like for them.”

Louie completed another 8 cycles of chemo, radiation to her brain and body, and the cord blood transplant.

‘Grateful for every day’

It’s been 8 months since Louie’s transplant with no signs of cancer. “It’s hard to get too excited,” she said. “I’ve been here before. You always live with the fear of recurrence, so I don’t celebrate too much.”

Still, she said, she feels lucky. “When I got out of the hospital I couldn’t even walk. Today I was able to walk along the beach. I feel really grateful for every day and every moment and I don’t take it for granted. It’s weird to feel so sick and terrible, and also so lucky.”

“This experience has made me, my husband, and my parents want to be better people. People were so kind to us. Three times a week, our neighbors brought a meal to our door. We never asked for it and it was so thoughtful. Everyone is just so nice.”