Young AML Survivor Follows Her Dreams

 

Raina Shah, now 26, of Bangalore, India, was in her second semester of her master’s program at Columbia University in New York City when the COVID-19 pandemic hit. At the same time, she began experiencing a toothache. Unable to find an appointment in the city, her toothache worsened. 

Raina at her alma mater, Columbia University. See Raina’s photo gallery.

Raina finally found an appointment in St. Louis, where her uncle lives, and had her wisdom tooth extracted. However, over the next month, other symptoms emerged: headache, stomachache and chest pain. Her family doctor suggested she have a blood test done. Raina took the risk of going to the hospital amid the new pandemic. She was soon diagnosed with acute myeloid leukemia, or AML

Because of safety protocols, Raina was alone when she heard the news. “The diagnosis was a huge shock,” shares Raina. “I didn’t have family with me, and it was all on me to decide what the next steps should be and if this was the treatment I wanted to do. I had to make some life-changing decisions. I still remember the day I was admitted. My uncle, aunt and twin sister waited all night in the parking area crying and in shock. Due to COVID, I couldn’t see or meet them.”

Finding Support Near and Far Away

Fortunately, Raina had trust in her care team. She was under the care of John DiPersio, MD, PhD, a medical oncologist, deputy director of Siteman Cancer Center and chief of the Division of Oncology at Washington University School of Medicine. “Even before my biopsy, Dr. DiPersio saw me, and just looking at me, he said it was AML,” says Raina. “He is an amazing doctor. I feel lucky I was under his care.”

Raina was placed on an inpatient chemotherapy regimen for 10 days with a 20-day maintenance stay afterwards. This was followed by five cycles over six months. The first month alone in the hospital was challenging, but Raina recalls the exceptional care of her doctors and nurses. 

“I had the best care team possible. I couldn’t have asked for something better. The care at the hospital was world class,” says Raina. “Dr. DiPersio, he’s the best. And the nurses, they are the ones that are with you throughout. They helped me so much, going on walks with me, even painting my nails. It was all those little things that made a difference.”

After her first hospital stay, Raina’s twin sister, Raveena, who was studying at Georgia Tech at the time, was able to be by her side the next six months. Raina’s best friend at Columbia also came to St. Louis. Her parents and elder sister flew from India as soon as they were allowed to travel during the pandemic. To keep her spirits high, two of her aunts and her uncle flew from India to be with her as well. Raina also mentions all the people who have become her aunts and uncles in St. Louis, who didn’t know Raina before but rallied around her with support after seeing a post on Facebook by Raina’s dad.

Raina with her parents and sisters.

“My family and friends have been with me throughout it all,” shares Raina. “My dad has taken care of all of my hospital stuff, my medicine and treatments and researched everything. My mom stayed with me and cooked all my favorite foods. They were my support; I would not be here without them.” With their encouragement, Raina even completed an internship with IBM while in the hospital.

Cancer Free After Transplant

After finishing chemotherapy, Raina was in remission and ready to return to India. Unfortunately, her leukemia relapsed, and her next course of treatment was a bone marrow transplant. She had a 100% match in her twin sister, Raveena. However, in Raina’s case, a half match was actually preferred, as an exact match might not recognize and attack the cancer cells. They found a half match in her elder sister, Ritika. 

Raina after her transplant.

Raina had her transplant in 2021, which included another month-long hospital stay. Fortunately, her twin sister, Raveena, stayed with her, and their mom brought Raina home-cooked, vegetarian Indian meals for breakfast, lunch and dinner. She was also given two clinical trial oral medications.

“I was initially hesitant to take the trial drugs, but my dad and my sister did a lot of research,” says Raina. “My uncle in India, who is a doctor, also helped me throughout by explaining everything in simple terms I could understand, using cartoons and analogies. That’s when I trusted it and decided to go ahead.”

Despite two brief hospital admissions for fevers in the months following her transplant, Raina has fully recovered. She is now cancer free and has returned to New York City — “the city of dreams” as she calls it.

Raina graduated with her master’s in Management Science and Engineering in December 2021 and is passionate about a career in Product Management. “What happened made me realize life is too short, and I’ve got to start doing what I love,” says Raina. Originally started as a distraction from treatment, Raina and her twin sister, Raveena, also run a popular Instagram account about their story as sisters called Two Minutes Apart.

Raina with her mother (right) and Stephanie (center), a nurse practitioner at Siteman Cancer Center.

While Raina honestly attests she wasn’t always strong and positive during treatment, she hopes others can find strength in her story. “Treatment is not your enemy; it will only make you better. There is no shortcut, and you have to go through the whole process. But it’s a short phase, and it will pass.” Raina continues, “You will have your family, your friends and God. Keep your faith in Him. If he gives you an obstacle, he also gives you a way out.” She recalled a phrase throughout her leukemia journey that her grandparents used to say in their local language that meant “you’ve got to leave it to God.”

Raina adds, “I dedicate this to Dr. DiPersio, Stephanie and the entire team — and not to forget, my whole family in St. Louis and India.”

Read other patient stories here.