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Magazine | Together in OK

Stephen and Esther

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Posted 04.06.11

Esther and Stephen Hill started off as many newlyweds do, with nervousness and hope, but their plans stumbled when Esther began noticing that even the simplest of daily routines left her feeling completely exhausted.

Initially, Stephen attributed the symptoms to the flu. But, as weeks passed and Esther’s health worsened, they agreed that something more was at work.

“She was pale and drained of color,” Stephen recalls. “She was very tired and bruising easily.”

The couple sought the answers behind the mysterious symptoms. They visited several doctors who studied her for anything that might explain her decline.

“The doctors first diagnosed her with PNH [paroxysmal nocturnal hemoglobinuria], which is a rare blood disorder,” Stephen says. However, the actual diagnosis wasn’t so simple.

Esther underwent treatment for PNH but did not improve. Another round of tests revealed a more complex scenario — Aplastic Anemia along with PNH.

“This disease is complete bone marrow failure,” Stephen says. “And it’s something that kills a lot of people.”

“I felt like the dreams that I had for our future were being ripped away. I had never cried so hard—from my gut,” Esther says. “Stephen was there, holding me. I just bawled until I couldn’t cry anymore.”

The rare combination of Aplastic Anemia and PNH required a bone marrow transplant.

“There was so much unknown,” says Stephen Hill. “I didn’t know if I would have a wife in a year.”

After testing five of Esther’s eight siblings, her doctors found three possible matches. But before the transplant, Esther’s own bone marrow had to be destroyed with chemotherapy. She was warned of possible side effects, which included infertility and hair loss.

“One of the hardest things for me was when I lost my hair. I was in the shower and it just started coming out in blobs,” she remembers. “Stephen was still sleeping, and I called to him, but I was nervous because he’s never seen me bald.”

“He was just so amazing—he held me and shaved the rest of my hair off.”

Stephen followed suit, shaving his own head in support of his wife.

“I definitely wanted to be strong for her,” Stephen says. “I felt like we were going to get through it and come out on the other side somehow.”

Esther began planning out her final days, asking herself how she could best use her remaining time

“I didn’t want to spend it crying and feeling sorry for myself,” she says. “I wanted to spend that time loving my husband and making the most of every day.”

Several weeks following the transplant, Esther’s blood production slowly increased, with no negative side effects. A year and a half later, Esther is considered completely recovered, astounding everyone, including Stephen.

“She’s working full time again,” he says. “I look back and think, ‘Was that just a bad dream?’ You go through something like that, and it helps put everything into perspective.”

Esther agrees.

“I realized that this was my life, whether it was hard or easy. I am grateful for life and am grateful to be here. My hair is even thicker… I mean, what more can I ask for?”

 

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