Jessie Quinn Patient Story

Jessie Quinn is an acute myelogenous leukemia (AML) survivor, a mother, wife, scientist—and pioneer. In September 2010, she was the first to participate in a Seattle Cancer Care Alliance (SCCA) clinical study led by Colleen S. Delaney, MD, that is making cord blood transplants a more effective option for adults.

Alternative transplants, including cord blood transplants (transplants of blood saved from umbilical cords and placentas following childbirth), are increasingly becoming an answer for the approximately 35 percent of patients in the U.S. who face having no matches from either a sibling or an unrelated donor. For those patients with a mixed-race or racial minority background, this number is even higher, approaching 70 percent or more who cannot identify an adult volunteer donor.

Cord blood is unique because its immune cells haven’t been educated against foreign invaders like bacteria and viruses. Additionally, the naïve immune system of cord blood means that close HLA tissue-type DNA matching is much less important for cord blood than it is for bone marrow transplants. In fact, most patients who undergo a cord blood transplant receive highly mismatched donors—without increasing their risk of graft-versus-host disease.
When Jessie first heard her she’d been diagnosed with AML, “I already knew I was going to have a hard time finding a donor,” she says. Her ancestry is half Caucasian, half African-American. A dozen years earlier, while a college student, she had signed up to be a donor in the National Marrow Donor Program after learning that African-American and biracial donors are underrepresented in the registry.

For Jessie, what began as a life-changing setback became a story of courage, thoughtful resolve, and ultimately, a return to good health.

A tough diagnosis

Like many leukemia patients, Jessie’s experience started with distressing symptoms. In early February 2010, “the fluid vessels on the back of my retina (in one eye) would rupture. I’d get these bubbles—you can’t see very well, it’s like looking through a glass of water.” She was diagnosed with central serous retinopathy (CSR) by her eye doctor. “What was inexplicable to everyone was that two weeks later it started up in my second eye, which was an extremely rare presentation of CSR,” she says. The symptoms would resolve and then start up again.

But what triggered the blood test that led to Jessie’s AML diagnosis was the crippling rectal pain that sent her to the ER about a month later. Jessie and her family live in Sacramento, and she was seen at UC Davis Medical Center. “They diagnosed me fairly quickly,” she recalls. “And sent me immediately upstairs to the oncology floor.” Jessie stayed there for the next month, for her entire induction chemotherapy.

At the time, Jessie was 35; her daughter Luna was just a year and a half old. Jessie’s first treatment involved five days of high-dose chemotherapy, followed by three weeks of monitoring while her blood counts dropped and then rose back to normal levels. Jessie recalls her feelings at that time: “Having a young daughter was the really tough part of getting this diagnosis. Worrying about the diagnosis of AML was one thing—but the worry about how it would affect my ability to be the mom I wanted to be was almost bigger."

The “wrong” perfect match

The point of Jessie’s induction chemotherapy was to put the AML in remission as a temporary measure while a search for a long-term solution was launched. Her doctors told her that she’d need a transplant to survive. Some of Jessie’s cytogenetics indicated a poor or uncertain prognosis. Additionally, she had what’s called central nervous system involvement. “Typically,” she says, “leukemic cells are in the bloodstream. Occasionally, like in my case, they get into the cerebral spinal fluid. It’s rare in AML to have that kind of involvement. Basically, my leukemia was not going to respond well to chemotherapy alone.”

When the National Marrow Donor Program searched for a potential donor in 2010, her name was the only perfect match. “I could never decide if that was actually funny or not,” she laughs.

After a five-month search, no viable donor was found. During this time, Jessie went through four more cycles of chemotherapy to keep the AML in remission. At that point, “We knew that we had to try another type of transplant. I had read a lot about cord blood transplants.” Ultimately, Jessie decided on SCCA. “I had already heard quite a bit about Seattle and SCCA—that they were leaders of the transplant field in general. So I felt a lot more comfortable going up there.”

Being part of the experiment

In her working life, Jessie is an ecologist for an ecological consulting firm that performs the restoration, planning, and design of the ecology of natural and urban environments. As a scientist, she delved into the scientific literature about stem cell transplantation approaches. “As soon as I learned anything, I would research the whole thing. I wouldn’t recommend that level of research to everyone, but I have that ability to look at things objectively from a scientist’s perspective.”

By the time Jessie travelled to Seattle for her assessment for a cord blood transplant, SCCA had found cord blood matches for her. “I had already learned about Dr. Delaney’s research in expanding cord blood units,” she says. Since each cord blood unit has a very limited number of stem cells, it takes more time to restore a patient’s blood counts after cord blood transplantation than with bone marrow or adult blood cells. This makes cord blood transplant patients more vulnerable to infections early after the transplant. Generating cells that can more rapidly restore infection-fighting white blood cells after a cord blood transplant is the motivation behind Dr. Delaney’s new technique, which expands 150-fold the number of stem cells in a unit of cord blood cells.

Jessie arranged to meet with Dr. Delaney during her initial visit to SCCA. “We talked about how she was building on her other research into cord blood stem cells, and I thought her ideas were brilliant and interesting,” Jessie says. “I’d never had an opportunity to be ‘part of the experiment’ and there was something about participating in this that felt right to me.”

Jessie’s transplant was performed in September 2010. SCCA physicians routinely use a combination of two cord blood units in performing this transplant in adults to extend the number of stem cells; Dr. Delaney’s study added a third, “manipulated” cord composed of cord blood stem cells that had been previously expanded and then frozen for patients without the need for HLA matching. Performing the expansions ahead of time allowed Delaney and colleagues to generate a “bank” of expanded cord blood cells that are immediately available for patients. The goal was to infuse these cells, in addition to the primary cord blood donors, in order to overcome the delay in white blood cell recovery.