‘It gave him back his life’: 12 years post-transplant, a bone marrow transplant patient bids SCCA goodbye

Ted Ave’Lallemant, SCCA patient
Ted Ave’Lallemant at his final check-up with Dr. Mary Flowers of SCCA’s Long-Term Follow-Up program.

In 2005, while working as a forest ranger in Wisconsin,  Ted Ave’Lallemant  started feeling ill. His fever and exhaustion tailed him for three weeks until he visited his doctor.

Ave’Lallemant, who was 45, asked the doctor to take a close look at his lab results because, he told him, “I’ve been feeling crappy lately.”

That afternoon the doctor called with results of his blood analysis. “I’m pretty sure you have leukemia,” he said.

Ave’Lallemant confirmed the doctor’s suspicion with a bone marrow biopsy at a local cancer center, which revealed he had a rare subtype called Philadelphia chromosome-positive acute lymphocytic leukemia. When part of chromosome 9 mistakenly attaches to chromosome 22, the resulting combination is known as a Philadelphia chromosome. This type of leukemia is harder to treat than other blood cell cancers.

It quickly became clear that Ave’Lallemant wasn’t going to survive without an allogeneic bone marrow stem cell transplant, a procedure in which a healthy donor’s stem cells are infused into a patient’s bloodstream, replacing the patient’s diseased cells. The new cells go on to grow, develop and reproduce in a process called engraftment. But first, Ave’Lallemant needed to be in remission, and that required heavy-duty doses of chemotherapy. Then he needed a bone marrow donor, which his transplant hospital in Wisconsin said would be challenging to find because he had a rare type of human leukocyte antigen (HLA); HLA proteins regulate the immune system, help us fight infections and play an important role in transplant acceptance. To increase a transplant’s chance of success, HLA matching is critical.

Ave’Lallemant’s oncologist in Wisconsin was perplexed by the hospital’s assessment and suggested Ave’Lallemant seek a second opinion.

“Where would you go?” Ave’Lallemant’s wife, Cindie, asked.

Without hesitating, the oncologist said, “Seattle.”

A perfect match

The Fred Hutch Bone Marrow Transplant Program at Seattle Cancer Care Alliance (SCCA) has performed more bone marrow transplants (BMT) than any other cancer center in the world. Its clinic is located on the same campus as Fred Hutchinson Cancer Center, which pioneered the procedure in the 1970s. The scientist who led the team, Dr. E. Donnall Thomas, won the Nobel Prize in 1990 for his achievement in establishing bone marrow transplant as an option for curing fatal hematologic diseases. Before the development of bone marrow transplant, a diagnosis of leukemia was a death sentence. With transplants, survival rates have climbed to more than 85 percent for some blood cell disorders. There are more than 175 U.S. transplant centers in the U.S., and SCCA is one of just six that have consistently outperformed expected one-year survival rates for allogeneic transplant patients, those who receive donor stem cells, according to the Center for International Blood and Marrow Transplant Research.

Ave’Lallemant and Cindie, a nurse, booked tickets to Seattle to consult with the bone marrow transplant team at SCCA. Dr. Derek Stirewalt, a medical oncologist and bone marrow transplant specialist, pursued the search for an unrelated donor and found a perfect HLA match. Buoyed by that success, Ave’Lallemant and Cindie relocated to Seattle in September 2005 for the transplant.

Starting a week before transplant, Ave’Lallemant was “conditioned” — bombarded with chemo and full-body radiation to eradicate any remaining leukemia cells and prepare his body to accept donor blood stem cells.

At the same time, his donor in San Antonio was being treated with growth factor to shift bone marrow stem cells to his blood in preparation for apheresis, a process that collects stem cells from the donor’s body into a plastic bag for transplant. The bag of stem cells was tucked into a cooler and put on a plane to Seattle. On Oct. 22, 2005, the bag was hooked up to Ave’Lallemant and the healthy stem cells drip, drip, dripped into his body. The occasion was celebrated with birthday cake, an SCCA transplant tradition that symbolizes the literal rebirth of a person trading the bone marrow he was born with for a selfless stranger’s new blood stem cells.

A common complication

If Ave’Lallemant were exceptionally lucky, that would have been the end of the story. He’d spend the requisite 100 days post-transplant being monitored at SCCA with blood draws and bone marrow biopsies, confirming that he was leukemia-free and that all his new blood cells were of donor origin. He’d wait for his new marrow to build up the immunity that would allow him to go to a basketball game and, as Ave’Lallemant puts it, “not die from cooties on the bench.” Then he’d go back to his job tending the spruce, pine and cedar groves in the forests of northern Wisconsin and live happily ever after.

Instead, like up to 60 percent of allogeneic bone marrow transplant recipients, Ave’Lallemant developed chronic graft-versus-host disease (GVHD), a complication in which the donor immune cells see the host – Ave’Lallemant, in this case – as “foreign,” prompting them to rebel against their new environment. “Imagine these cells had brains and they say, ‘Uh, this isn’t the guy from San Antonio,” says Ave’Lallemant. GVHD can impact organ function; in Ave’Lallemant’s case, GVHD attacked his skin, the body’s largest organ. He developed scleroderma, a condition that hardened the skin on his thighs and torso, and dealt with balance issues from nerve damage related to GVHD and his prior chemotherapy and radiation. “My skin has taken 12 years to say, okay, these cells will be Ted now and not David.”

Not that “Donor Dave” is a bad guy to be. A U.S. Army colonel and pediatric oncologist, Dr. David Harford’s stem cells were a perfect match for Ave’Lallemant. In 2015, Harford and Ave’Lallemant donned matching orange Obliteride jerseys and rode 25 miles together as part of Fred Hutch’s annual cycling extravaganza to raise money for cancer research. They call each other best friends.

During those 12 years that David’s cells were gradually becoming Ted’s, Ave’Lallemant, broad-shouldered and craggily handsome, has experienced many changes. He had to retire from his job fighting forest fires because his oncologist said he should avoid smoke exposure, so he switched his focus to forest management. He changed his email from a boring first-name-last-name convention to “TedStrong1.” He has become a stalwart volunteer with Be the Match, which maintains the U.S. bone marrow registry.

Ted Ave’Lallemant
Ted Ave’Lallemant

But perhaps the biggest change, geographically and emotionally, came four months post-transplant when Ave’Lallemant returned home to Wisconsin. “Now I was 2,000 miles away from those who had my care in their hands,” he says. “It was a weird feeling to leave that constant, vigilant care.”

For the first few years, Ave’Lallemant returned to Seattle twice a year for check-ups at the Long-Term Follow-Up Program (LTFU), a comprehensive post-transplant survivorship program that provides life-long medical consultation services and tracks patients’ health and well-being. Visits here are the opposite of a hasty breeze-by from a doctor in a hurry; they last for a couple hours as physicians, nurse practitioners and nurses assess everything from immune system functioning to secondary cancer risk to difficulty concentrating, all potential complications of transplant.

For the past decade, Ave’Lallemant has returned to Seattle annually for a thorough check-up at the LTFU. Now, 12 years post-transplant, he had arrived in Seattle for what he expected — what he hoped — would be his final visit. A year ago, he had completely weaned himself off immunosuppressants he’d been taking for his chronic GVHD. He was feeling good, feeling strong, and he was ready to disconnect from what felt like a lifeline – the doctors and nurses who had grown to be almost like family over the years.

“It will actually be quite bittersweet to leave,” says Ave’Lallemant. “For years I’ve seen the same doctor, the same nurse practitioner, the same nursing staff. It is hard to think I won’t be seeing these people again.”

A new lease on life

Sept. 21, 2018 dawns sunny and clear. You could be forgiven for thinking that Ave’Lallemant might detest Seattle, a city filled with memories of pain and fear, of needle jabs and nausea. But you’d be wrong.

Ave’Lallemant loves this city. It’s here where he literally got a new lease on life. He and Cindie know the region better than many permanent residents. Every time they come for a check-up, they go exploring, visiting the original Starbucks at Pike Place Market and kayaking on Lake Union. They’ll miss those adventures. “We have nothing bad to say about Seattle,” says Cindie. “It gave him back his life.”

Ave’Lallemant and Cindie show up early for his 10 a.m. appointment at the LTFU clinic. Nurse Elaine Hagan pops into the exam room. “How are the girls?” she asks.

The Ave’Lallemants have two daughters, both oncology nurses. Christina, a mom of two, is a nurse at a bone marrow transplant unit in Milwaukee. Britta works at a general cancer center in Wausau, Wisc.; after her dad’s experience, she organized a bone marrow donor drive at her school. “Britta is getting married in February and Christina had her second, a boy,” Cindie says.

“Oh, wow!” Hagan says.

Ave’Lallemant can’t contain his big news. “You are never going to see me again,” he tells the nurse. “I’m not making that up.”

“What?!” Hagan responds.

The next half-hour is filled with poking and prodding and questions, so many questions. How is Ave’Lallemant’s heartburn? (It’s under control.) His breathing? (Good.) His skin? (Tough and taut in places from his chronic GVHD but no worse than last time.) His alcohol intake? (He sips wine with dinner six nights a week and brews his own beer.)

Dr. Mary Flowers, medical director of the Adult Clinical Care Long-Term Follow-Up program, gently chides him. “You may be drinking too much!”

Ave’Lallemant is sitting on the exam table as Dr. Flowers, who has been overseeing his care for years, stands before him. She is so tiny that they are nearly the same height.

She runs through potential complications that could befall Ave’Lallemant. His GVHD could flare, but it’s unlikely. He remains at risk for secondary cancers including oral, skin, esophagus and thyroid so he needs to be vigilant, maintain a healthy lifestyle and use plenty of sunscreen. But there’s optimistic news too: His risk of relapse is so low that Dr. Flowers uses a word she often avoids.

Ave’Lallemant goads her: “I’ve asked you to use the ‘cure’ word and you wouldn’t do it.”

“I will do it,” says Dr. Flowers.

“Cured?” asks Ave’Lallemant, incredulous.

“Yes,” says Dr. Flowers.

Cindie starts crying. “Thank you for everything,” she says. “This whole place has been the best thing ever. This place is why Ted is alive.”

Dr. Flowers, in her poppy-red jacket and black pants, smiles wide and clasps hands with Ave’Lallemant. “We are always here for you if you want to come for a check-up,” she tells him.

“I think it’s best not to,” says Ave’Lallemant. It’s time to move forward, to embrace life after cancer.

On Dr. Flowers’ SCCA profile page, she says her philosophy is to “listen carefully to what patients are telling us…be compassionate and humble, and continue on the path to seek better treatments.”

Now, she is listening carefully as Ave’Lallemant tells her he won’t be back. “Have a great life,” she tells him, hugging him goodbye for a long moment. “Life is today, right? And today is the present. That is why we call it a gift.”

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