Turning Points: Together in sickness, married in health

Leeanne Hester was seeing a patient when she suddenly felt like she was going to pass out and had to excuse herself from the room. The 23-year-old was working a part-time job at a primary care physician’s office while close to finishing earning her master’s degree in public health at George Washington University in the early summer of 2013.

For months, she had dealt with an unbearable level of fatigue that shadowed her every day, until she was exhausted all of time. Then there was a sick feeling in her stomach that wouldn’t go away and unexplained weight loss. But this light-headed episode was enough to finally make her see a doctor.

Everything had been falling into place. Soon, she would finish school. Her boyfriend, Jimmy Mako, would be joining her in Virginia in the fall. They had met while she was an undergraduate student trainer at Wittenberg University in Ohio and he was on a physical therapy rotation in the athletic department. Now, they were talking more and more about their future together.

After a colonoscopy, Hester was diagnosed with Crohn’s disease. But what she wouldn’t know for several months is that she had been misdiagnosed. Her situation was much more dire.

A rare case

Between the summer and fall of 2013, she followed up with her doctors and learned that her blood counts weren’t recovering, which meant the illness wasn’t Crohn’s. She credits her education, especially in public health, for helping her to advocate for herself.

“I cannot emphasize how important it is to advocate for yourself in our health care system,” she said. “I didn’t shy away from asking questions and pushing for answers, because I knew something wasn’t right with my body. I even had to call and remind one of my specialists that I needed to schedule a followup appointment. Had I waited even a month or two, it may have been too late.”

Following her instincts, Hester scheduled a bone marrow biopsy for early December. After so many specialists, she didn’t expect it to reveal anything.

But on December 3, she was diagnosed with acute myeloid leukemia, a rare and aggressive blood cancer, and told to start chemotherapy immediately. The cancer can kill within four to six weeks without treatment, Hester said.

“It was extremely overwhelming and shocking to be told that I had cancer,” Hester said. “It was the last thing I expected. But I knew all along that something was going on. You know your body.”

Three days later, Hester was admitted to the James Cancer Hospital at Ohio State University in her hometown of Columbus. For a week straight, she received a constant drip of chemotherapy. She was hospitalized for treatment for a month, and she would go back in the following months for two more rounds.

Meanwhile, after finishing his physical therapy contract in the Washington, D.C., area, Mako packed up her things and moved to Columbus to be closer to her. He never missed a day visiting her in the hospital.

“You know a man really loves you when he shaves your head for you when your hair is falling out, and he still tells you you’re beautiful, kisses you and holds your hands through it all,” Hester said.

At the James, Hester was finally able to receive some answers about her misdiagnosis.

“Her case was unusual but not challenging,” said Dr. Rebecca Klisovic, her lead doctor at the James. “She faced a few months of confusion because she was a little bit anemic when she was diagnosed with Crohn’s. But when her anemia got worse, then we looked closer at that.”

Acute myeloid leukemia is an uncommon cancer, especially for people Hester’s age, with three to five cases per 100,000 people in the United States and Europe per year, Klisovic said. But Hester’s case was even more rare: She had two mutations associated with her leukemia. One was low-risk, but the other, FLT3, was high-risk. One-third of acute myeloid leukemia patients have this mutation, which increases the chances of a relapse.

Klisovic recommended that Hester be placed on the waiting list for a bone marrow transplant. Given the fact that she was young and healthy outside of having the cancer, she would be able to handle the rigors of the procedure.

Without a transplant, Hester might have lived for five more years at best. But because a bone marrow transplant is essentially like transplanting an immune system, it would help stave off a relapse.

Family members are ideal bone marrow donors, but Hester’s younger sister, Lindsay, wasn’t a match. In March 2014, her doctors narrowed the list to four candidates through the National Marrow Donor Program. Three responded, and one, a 22-year-old man in Israel named Evgeny Galinsky, was a perfect match.

In May, Hester received the transplant, which is comparable to a blood transfusion. She was placed in isolation because the pre-transplant process had involved essentially killing off the T cells of her own immune system so her body would accept the new marrow. When he came to visit, Mako had to wear a mask.

She struggled with graft versus host disease, in which the new immune system attacks organs. Not unlike an allergic reaction, she had skin and joint issues in response. Hester also suffered from gastrointestinal infections, some of the worst Klisovic had seen. But she was able to overcome it all.

Her doctors will continue to keep an eye on her, as the risk of a relapse is greatest in the first two years after treatment, but they don’t anticipate any further problems.

In December 2014, Mako took her on a long weekend trip to Chicago. That Sunday, they went out for a nice dinner before taking an evening walk past the sculpture known as the “Bean” and on to a fountain. There, he bent down on one knee and proposed.

“The emotional and physical rigors of cancer definitely made us a lot closer and strengthened our bond,” Hester said. “It forced us, as it would most people, to really address those tough issues in life at a young age; it made us more vulnerable and honest with each other. It took away all the frills of love and made us really look at our commitment to one another and especially, in my opinion, his commitment to me. It truly revealed the depth of our love for each other. I think we’ve got that whole ‘in sickness and in health’ thing down.”

A ‘life-saving donation’

Per the rules of the transplant center, Hester had to wait a year before learning the identity of her donor. She wrote him a letter and sent it to his address in Israel. It turned out that he was part of a helicopter squadron with the Israel Defense Forces.

When Israeli soldiers are enlisted, they can provide a cheek swab to become part of the bone marrow registry partnership through the transplant center Ezer Mizion.

“I thanked him for his life-saving donation, which gave me a chance to experience all life’s events, including marriage to Jimmy and the privilege of growing old,” Hester said.

Two months later, she received an email from Galinsky. He was happy to learn that she was recovering and that she had even reached out. Before her letter, he had no way of knowing whom his donation had helped, but he said he believed that all lives were worth saving.

They exchanged more correspondence, and she began to develop a portrait of Galinsky: a humble and kind young man who used emojis when he was joking and liked to ride motorcycles with his friends. They talked about their hobbies and shared stories and photos of their families.

In April, Galinsky came to the wedding, a small ceremony in a historical church in Ohio. Hester said it was surreal to meet him in person, after only ever exchanging emails, but she wouldn’t have had it any other way.

“We were both very grateful to have Evgeny be a part of our wedding celebration, which probably wouldn’t have been possible without his donation,” Hester said. “Having him there really felt like it gave a wholeness to the day, because the wedding not only marked a new chapter for me and Jimmy as being husband and wife, but also that we could move forward with me being healthy and hope for the future.”

She is continuing to do well more than a year after the transplant and returned to work six months ago. Now, the happy couple is enjoying married life, and Hester (now Mako) hopes she can use her experience to help others.

“Cancer is really ugly and hard,” she said, “but the love and resilience that people show through the suffering is really beautiful.”

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