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.
The recovery period: difficult, long, but fairly uneventful
Jessie remained hospitalized for about 30 days post-transplant. “It was a difficult, long, but fairly uneventful recovery, which is really one of the best things you can hope for. I loved my doctors at SCCA,” she adds. “For the amazing things they do, the SCCA doctors I worked with have absolutely no pretenses at all—they’re just very approachable, caring people. I think it makes a big difference in your treatment, and in your recovery, too.”
Jessie moved back to Sacramento with her husband and daughter in early January 2011. She recalls feeling very fatigued for the first year of her recovery. “I didn’t know you could be that tired,” she laughs. “I was in bed for... it felt like weeks on end. Around March, about six months after transplant, I started working 10 hours a week editing reports for my company. That was good. I needed to exercise my brain and I was still really tired, but it worked. I increased my hours slowly and by the following September, after I went for my one-year checkup, I changed some of my medications and I felt significantly better after that.”
Jessie’s one continuing artifact of her transplant is contending with graft-versus-host disease (GVHD). “It’s something I feel silly whining about when I’m so lucky to still be alive,” she says. “I just get these rashes—especially when I’m exposed to the sun.” Having worked outside for most of the last two decades, limiting outside activities has been especially difficult. Jessie continues to take medications for GVHD, as well as keeping an eye out for potential side effects. She had a successful two-year check-up at SCCA in September 2012 and is doing so well that “I don’t have to come back until my five-year anniversary.”
She now works four days a week. “I haven’t started working full time yet,” she says, “because I feel like I want to make up time with my daughter”—time she feels she lost during her illness.
Never give up
“In most places, donating cord blood is still a fairly difficult process right now,” Jessie says. “If you want to donate cord blood to a public bank, you usually have to arrange it on your own and have your doctor agree to learn how to do it. If more people knew about public cord blood donation and had their eye out for it, that would be great. Then maybe the process would be streamlined and be more widely available. When there are more and more cords in the banks, everyone that needs it can get this kind of transplant.”
Jessie says the message she wants to give people who aren’t likely to find a perfect donor match is to never give up. “There are many other types of transplants besides matched adult donors that are having very good results. You should keep asking questions—asking multiple doctors about new techniques and clinical trials. If someone says they’re out of options, that may not actually be the case at all.” She is living proof of that.