Leukemia survivor Mark Tose had one burning question for Dr. Mary Flowers: How much of the connection he feels with the donor for the transplant that saved his life is because they were biologically a perfect match — or is something else at play?
“We’re so similar,” Tose told Flowers, who directs the Adult Clinical Care Long-Term Follow-Up Program at Fred Hutchinson Cancer Research Center. “We both have red hair, a similar sense of humor, even the same motto (‘It’s all good’). And it feels like we’ve known each other forever.”
In truth, Tose, 60, and Reed Salmons, his 23-year-old peripheral blood stem cell donor, only met in person Saturday at a meeting organized by national registry Be The Match and Bloodworks Northwest. In the days since, they’ve shared meals, played music together, attended a party thrown in Salmons’ honor by Tose and his wife, Patty, and on Monday, they toured Fred Hutch to see the labs where Salmons’ stem cells were processed. Through it all, they’ve felt an unexpectedly easy familiarity.
“There is a lot of very deep connection between a donor and the patient,” Flowers told Tose Monday morning. “He is living inside you.”
In May of 2013, Tose, a Boeing senior manager who also flies small planes as a hobby, went for a routine physical so he could renew his pilot’s license. At 7 that night, his doctor called him to say his blood counts were abnormal.
“I told him I feel fine. It’s obviously a mistake and asked him if they could run the test again,” he remembers. But they already had, his doctor told him. It was no mistake. He had acute myeloid leukemia.
Tose underwent six rounds of chemotherapy, including a final round at Seattle Cancer Care Alliance, and eventually went into remission. But due to an anomaly in his genetic makeup, Tose learned, it was almost certain his cancer would come back — and likely very soon unless he had a peripheral stem cell transplant.
While he has a large and supportive family, cancer has cut a swath through it and so some immediate relatives weren’t eligible to donate and those who were didn’t match.
“I was so scared,” remembers Tose. “… They had told me ‘It is our judgment that your long-term life comes down to getting a stem cell transplant.’ “
His doctors turned to Be The Match, the largest bone marrow registry in the world, which strives to find a donor for patients who don’t have a suitable one in their family.
Soon, Tose learned, someone had been found who matched 10 out of 10 antigens tested for a stem cell transplant. A perfect match.
Salmons was a college student at Dickinson College in Carlisle, Pennsylvania, in the spring of 2013 when he decided to give up part of his lunch break to join the registry during a drive sponsored by the school’s football team. “It was literally a cheek swab and 10 minutes later I was done,” he said.
He didn’t think much about it again until the following October when he started getting calls. At first he ignored them, not recognizing the number and believing it was a telemarketer. “Finally I got an email that pretty much said, ‘Please in God’s name give us a call back.’ “
When he did, he learned he was needed as a donor for a man with AML. By then, Salmons was a senior biology major doing a project on leukemia, something a friend had died of when they were both just kids. He was also in the middle of his final season playing lacrosse for his school, something he’d have to interrupt to donate. Without hesitation he agreed. “It was a no brainer to go through with it.”
In the time leading up to the day his stem cells were harvested, he was aware that he carried the key to another life. “I kept thinking, don’t get sick. Don’t get in a car accident.”
Salmons went through more screenings and then, a few days before donating, he had a series of injections of growth factor to stimulate the stem cells. The day of his donation, a central line catheter was inserted and he watched his cells get harvested to be flown across the country to Tose. “It was cool,” he remembered.
His only side effect, he said, was some bone achiness in his hips, back and knees.
“It truly was so easy,” he said.
On Jan. 22, 2014, Tose was in his hospital room at the University of Washington waiting for Salmons’ stem cells to arrive. A blizzard had hit the East Coast and the first flight that was supposed to bring them had been canceled. Tose worried they wouldn’t arrive.
“At that point, you’re on a one-way journey,” he said. “You’re either going to succeed or you’re going to die. You only have so much of a time window.”
Technicians in the lab at Fred Hutch were waiting to process the stem cells as soon as they arrived. They vividly remember worrying about the storm and waiting for the cells to arrive, said Christy Satterlee, a patient access manager at Seattle Cancer Care Alliance, Fred Hutch's treatment arm.
At 10 a.m., Salmons’ stem cells arrived in Tose’s hospital room. He held the IV tube in his hands and watched them flow into his body. His hospital room was decorated with the motto, translated into a dozen languages, that he’d adapted years earlier to encourage his team at Boeing during a stressful time: It’s all good.
On that day, the nurse wrote a new message on the white board in his room: “Happy Birthday!”
Shortly after the transplant, Tose suffered some complications and was sedated and intubated so he’d breathe easier. He woke up in the intensive care unit of the University of Washington on Feb. 10, 2014, surrounded by his wife, brother, doctors and nurses. “I looked up and I said ‘Did it work?’ They told me it did and I cried for a minute. Then I asked who won the Super Bowl.”
Tose was back.
From the moment Tose learned he was going to be given donated stem cells, he knew he’d want to meet the donor someday. But first he had to recover. In June he returned to work part time, then full time in August. But it proved to be too much and he had a bout of graft-vs.-host disease, in which the donor cells attack not only the disease but healthy parts of the body too, and he took a leave of absence from work.
In December, he found out his donor would be open to connecting. Be The Match allows patients to have anonymous contact during the first year, and they are allowed to make direct contact after that year if both parties consent. In February, at the one-year mark, Tose and Salmons learned each other’s names.
Tose Googled Salmons and within five minutes found himself watching a video the college student had made encouraging others to sign up for the bone marrow registry. He was awed by him.
“The first email I wrote him I asked, ‘How do you thank someone for saving your life?’ “
The two began talking by phone, finding an easy rapport. Salmons is about the same age as Tose’s children, Amanda, 25, and Alex, 23. He now works in a genetics lab at Children’s Hospital in Philadelphia and will be applying to med schools this summer where he hopes to pursue his interest in oncology.
On Saturday, shortly before the two men met in person, Tose was overcome with emotion. “His selfless act saved my life,” he said, wiping away tears.
Minutes later, Salmons rounded the corner. Tose’s face lit up as he clasped both of Salmons’ hands in a high five and then folded him into a bear hug. “We won!” Tose told him.
“Between you and me, we can show people what’s possible,” he said. “We can help others live.”
On Monday, the men toured the labs on the Fred Hutch campus and met those who prepare stem cells for transplant, including Andrew Mackie, who processed Salmons’ cells when they finally arrived after the storm. Tose thanked every person in the lab.
“Thank you for saving my life,” he told them, growing teary. “It’s a message that has to be delivered in person. It took so many people — it’s a whole community that helps you.”
Tose wants to help others too and is a volunteer in a T-cell trial at Fred Hutch, hoping to help pave the way for better treatments and cures. “I’m alive because of a lot of people who sacrificed and took a risk.”
The men say they’ve felt like family from that very first phone call, but are looking forward to really getting to know each other over the coming years. Tose said he’ll teach Salmons to play the guitar, one of his hobbies. And Salmons says he’ll tutor Tose in lacrosse.
“We’ve got time,” Tose said.
Linda Dahlstrom is the senior writer/editor at Fred Hutchinson Cancer Research Center. Previously, she was the health editor for NBC News Digital and msnbc.com. She’s also worked at several newspapers during her 25-year career as a journalist covering AIDS, cancer, end-of-life issues and global health. Reach her at firstname.lastname@example.org.