Sean Cryan lives in the space between control and surrender.
While the 51-year-old father of three describes himself as a control freak, he also intimately understands that the most carefully organized plans and dearest dreams can crumble. Since he was young, he’s known that a rare blood disorder stalks his family line. His grandfather and great grandfather both died of acute myeloid leukemia. A cousin had a transplant at Fred Hutchinson Cancer Research Center at the age of 19 after being diagnosed with AML.
Then, four years ago, cancer came to his own house. His youngest daughter Louisa was 12 when she began running a fever shortly after New Year’s Day. When it climbed to 106 degrees, Cryan and his wife, Laurel, rushed her to the hospital where tests were run. Later, a doctor brought the parents out of Louisa’s exam room and quietly told them, “We think she has leukemia.”
When everything falls away, Cryan knows, what’s left is the moment and the people you love who are in it with you. “Anything you imagine will happen is not going to match up to the reality,” he said.
One thing the family never could have imagined is that not only would Louisa be diagnosed with AML, but that just a few years later, Cryan would be diagnosed with cancer, too. Tests revealed he had myelodysplastic syndrome (MDS), a malignant blood disease where the bone marrow doesn’t function normally.
Today, from their Seattle home, Cryan and Louisa joke with each other about who has had more treatment. Cryan “wins” as having had more blood transfusions. Louisa is ahead in the category of having the most chemo. They debate who’s had more bone marrow aspirations. “I had more radiation,” Louisa said. Her dad takes the lead in having had two transplants from peripheral blood stem cells to Louisa’s one transplant from umbilical cord stem cells.
These days, Louisa is a healthy 16-year-old high school sophomore who plays bass in the drum line and loves rock climbing. Her transplant cured her leukemia and, after spending a year in the more sterile environment of the Hutch School, which serves patients and families of patients, she was able to return to her school.
Cryan, an architectural project manager, has had a longer road back to health. Between 30 and 40 percent of patients with MDS will develop leukemia, said Dr. Joachim Deeg, Cryan's physician at Seattle Cancer Care Alliance and a member of the Clinical Research Division of Fred Hutch. Cryan’s particular mutation of MDS was “high risk,” meaning that it had a high probability of progressing to leukemia.
He is someone who in his personal and professional life has been quite successful and in control and this disease finds him in a situation where he’s not always,” said Deeg. “He wanted to get out from under the Damocles Sword.”
Cryan had a transplant in 2012, which failed to engraft, and he underwent a second transplant in August 2013. He’s looking forward to returning to work later this summer and recently has resumed riding his bike, a passion he’d had to set aside after his health became tenuous. The number of doses of medicine he takes each day has shrunk from 55 to 26 and he still grapples with fatigue. Going through this shared experience with Louisa has added another dimension to their relationship, he said.
“There are things that happen to me and I’ll tell Louisa and I know she understands in a way no one else will,” Cryan said.
When Louisa was young, Cryan’s hopes were so broad that that they couldn’t be contained in concrete wishes. He remembers just being curious about who she’d become.
When she got sick, his wish for her sharpened: “I just wanted her to live,” he said.
He and Laurel clung to the words of Dr. Abby Rosenberg at Seattle Children’s, where Louisa was treated.
“She said every patient has a 100 percent chance of survival. It’s just that some don’t make it,” he said. “It was a very positive way to hear it.”
Louisa was hospitalized for 177 days while she underwent chemo and radiation, followed by her transplant and recovery time. Her parents alternated nights sleeping in her hospital room, while the other would be at home with their two older daughters, Emma and Lily. At night, after everything was quiet, Cryan posted to Louisa’s Caring Bridge online journal to update friends and family. It was when he processed things, he said.
“Bedtime means dropping the distractions, entertainment, and obligations of the day, and settling in with the reality of life,” he wrote in a post on June 1, 2010, several weeks after her transplant. “It’s a time when I wish we could blow a cloud of dust over Louisa’s eyes so she would float off and drift for hours, without her tethers and medication, as free in her rest as she feels when she is off the machines, taking her nightly shower and riding bikes around the unit.
“Instead, bedtime means thickened mucous irritating her throat and cyclosporine infusions causing burning sensations, and small infections swelling and causing discomfort in her hands. Bedtime is not the untroubled sleep of children, but the labored half-rest of the infirm, interrupted by alarms on pumps, timed medications, vital signs, fevers and abrupt spasms from long empty stomachs.”
During Louisa’s stay, some young friends she made grew sicker and died, including a little boy she loved named Anthony who passed away at the age of 2.
It was a reminder of the one possibility Cryan wouldn’t allow himself to stare too closely at. “You have to operate assuming it will work out,” he said. “You don’t want to consider the possibility that your child will die.”
Louisa’s cancer was much harder for Cryan to cope with than his own. “I felt in some way that I was in control of my own survival ... I didn’t know how to deal my child having leukemia,” he said. “All the books about raising kids don’t include how to deal with it if your child gets what could be a life-threatening illness.”
When Louisa was in the hospital, both he and Laurel cut back their work schedules to part-time. When colleagues wondered why he was working at all, he told them he found solace at work. It was one place where things made sense.
Friends from work also helped comprise the net of support that held his family up. Many visited them in the hospital. Others brought food. Each Friday, Louisa’s friends from Boys & Girls club would bring her a self-made music video to make her laugh.
“You suddenly realize you have this amazing community – and you had no idea,” Cryan said, his eyes filling with tears. “And the idea of community is also the people who donate blood products, who give up stem cells. They don’t know us. They don’t have to, but they do it.”
When Louisa had her transplant, friends made posters counting down each day until she could go home. They are framed now and hang in the renovated garage next to the pool table and her drum set. “When you are broken, your family and friends are the glue that bonds you,” reads one.
These days, both father and daughter are looking to the future and embracing the luxury of normalcy. While Cryan was in the hospital last Father’s Day, this year his daughters will be cooking for him and he’s reveling in just having time with his family, especially as his girls grow older. “I cherish the moments we have with all of them,” he said.
Also, his perspective has shifted. When you’ve faced the biggest losses, the smaller things can recede in the background. And while you wouldn’t choose to learn it, you also know how much you can survive.
“For Louisa and me, I know now that if no one in this moment is actively dying, we can work it out ... We can figure out what we need to do and move on,” he said. “If there’s traffic, we can be a little late. It’s OK. No need to get tense.”
Linda Dahlstrom is a former Fred Hutchinson Cancer Research Center editor. Previously, she was the health editor for NBC News Digital and msnbc.com. She also worked at several newspapers during her 25-year career as a journalist covering AIDS, cancer, end-of-life issues and global health.