'A chance to hope’: Leukemia survivor, family reunite with favorite doctor

Hutch News

'A chance to hope': Leukemia survivor, family reunite with favorite doctor

Ex-patient’s wife recalls how her sacred mission to save her husband led her to Fred Hutch

Aug. 26, 2015

Hugh and Kate Fagan watch Aimee Fagan, Hugh's wife, reunite with Dr. Colleen Delaney, Aug. 13, 2015, at Fred Hutch in Seattle. Delaney helped saved Hugh six years ago with a cord blood transplant.

Photo by Robert Hood / Fred Hutch News Service

The trio locked eyes then locked arms – their first reunion since the grim days when Hugh Fagan’s survival seemed lost.

As Fagan stepped from that embrace, his wife, Aimee, held tight to her favorite scientist, Dr. Colleen Delaney. In a busy lobby at Fred Hutchinson Cancer Research Center in mid-August, Aimee kept hugging – and kept crying.

Hugh knew exactly why. Following his 2009 diagnosis of an aggressive form of leukemia, Aimee had launched a sacred mission to save her husband. She’d read medical journals. She’d questioned top oncologists across the country. She’d seen 4 a.m. come often while she scoured cancer websites.

Finally, in that same year, she’d found hope during a midnight call to Delaney, who happened to be in her Fred Hutch lab, working on solutions to improve the outcomes of patients in need of a cord blood transplant. Soon, Hugh was en route from Dallas to Seattle to receive a cord blood transplant.

“Aimee did all the research and made sure I was doing what I needed, to fight,” said Hugh Fagan, 45. “She went off on her own path, challenging people to think, looking for something outside traditional leukemia treatments. She earned her M.D. on that job.

“She said, ‘I’m not going to let him die.’ She found the solution. She found Colleen. And I am here. It’s unbelievable,” he added.

Kate Fagan, 9, listens to Dr. Colleen Delaney before looking at cells under a microscope in Delaney's lab.

Photo by Robert Hood / Fred Hutch News Service

Cord blood comes from the placenta and umbilical cord of newborn babies. That cupful of fluid is traditionally discarded at birth.

But researchers discovered that cord blood contains valuable stem cells – and that those stem cells can be transplanted into patients, where they engraft and replace damaged blood and immune systems, just like traditional bone marrow donations. Better still: Donors and recipients need not be a perfect genetic match, as is required for bone marrow transplants.

That caveat was crucial to Hugh. After the diagnosis, doctors had told him he’d need a bone marrow transplant to overcome his illness – an aggressive form of acute myeloid leukemia, AML. But no matching marrow donors were found.

“My [chemotherapy] treatment in Dallas had run out,” Hugh Fagan recalled. “They said, ‘You don’t have a match, we’re out of options.’”

A revolutionary technique

Fred Hutch launched its Cord Blood Program in 2006.

Cord blood donors can be identified for nearly all patients in need of a bone marrow transplant – including patients who can’t find even one unrelated, adult donor in the pool of some 20 million people who have joined bone marrow donor registries. However, patients receiving cord blood transplants are at a significant disadvantage due to the small number of blood-forming stem cells contained in one cord blood unit.

When Hugh Fagan fell ill, Delaney and her colleagues were developing a revolutionary solution: methods to multiply – by up to 200-fold – the always-tiny harvest of stem cells from cord blood in the lab then deliver them back to the patient. That advance in cell expansion would mean faster engraftment and less risk of post-transplant infection for adult recipients.

“As I did my research, I kept asking: Who has the best overall survival rates? Who’s on the cutting edge?” Aimee Fagan said. “Everything kept pointing to Colleen.” 

So, on a whim, she had emailed Delaney at nearly 10 p.m. on a Wednesday in May 2009, six weeks into Hugh’s illness. By then, chemotherapy had put Hugh into a shaky remission. Doctors expected the leukemia to storm back. In order to receive a transplant, a patient must be in remission.

“If you have even five minutes available, I would be humbly grateful for the opportunity to speak to you,” Aimee wrote.

Two hours later, Delaney emailed back: “I am at work … call me …”

“This is why I do what I do,” Delaney said later. “When someone’s in need, it’s my job to call them back and help them make an informed decision.

“I remember the conversation being along the lines of: ‘Yes, he has a disease that probably needs to be transplanted; yes, we can do this; yes, you have a chance to have hope.’

“Aimee was forced to be this person who’s trying to uncover every stone. That’s exactly what she did,” added Delaney, head of the Fred Hutch Cord Blood Program.

Ironically, when Hugh first arrived in Seattle in August 2009, he was unable to participate in Delaney’s trial of the expanded cord blood cells – the breakthrough work that had originally caught Aimee’s eye. The trial was awaiting more funding and unavailable. Instead, he was transplanted that September with two units of cord blood, the standard approach. 

Hugh returned to Dallas after the transplant. About one year later, severe setbacks struck, including a bacterial infection in his lungs that spread to his brain. He was intubated three times to sustain breathing. Before each procedure, doctors warned Aimee: “He’s not going to come out of this.”

"We remained in crisis mode for at least two years,” Aimee recalled. “When there was a complication, I would email Colleen. She was always on it – ‘Have they considered this? Have they considered that?’ She was pulling data, thinking all the time.”

'Sense of gratitude'

Today, nearly six years out from his transplant, Hugh’s blood counts are once again normal, he said. Last year, he escorted his daughter, Kate, 9, to a father-daughter dance. He purchased – and made – his recent trip to Seattle as part of Dallas-based fundraiser for Dr. Phil Greenberg, the head of immunology at Fred Hutch.

Hugh is planning a return to Seattle to attend the Cord Blood Transplant Reunion Sept. 25-26 at Fred Hutch. For that trip, he’ll bring his mother.

"You get hit by that two-by-four. You come out the other side,” Hugh said. “For me, I have a sense of gratitude, a sense of thankfulness.”

Aimee, a lawyer, said she has formally retired the composition notebook she once considered “my compass, my most prized possession during the war on AML.”

Filled with doctors’ names, drug names, and Hugh’s lab results  – all of them hand-written in black and blue ink – the notebook once was on her at all times, including the many overnights she spent in Hugh’s hospital rooms.

She hasn’t scrapped it because, in the back of her mind, she knows “curve balls can come from anywhere and anytime,” and the medical data inside could again be of value, she said.

But mainly, she stores it as a proud record of all they've endured, Aimee said. It now gives her goose bumps just to open it. And when she does, she can read the mantra she inscribed inside the cover for her husband and herself:

“It's you and me against cancer, do you think it has a chance?"

Delaney listens to Hugh Fagan’s reaction to the activities in her Fred Hutch research lab.

Photo by Robert Hood / Fred Hutch News Service

Interested in donating cord blood or learning about the procedure? Here’s more:

Bloodworks Northwest

U.S. cord blood donation hospitals

Be The Match

Join the conversation. We welcome your comments about this story on Fred Hutch's on Facebook page. 

Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith." 

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