By Sheila Dwyer, MedTech1 Staff
In today’s world, some families must settle for being together in spirit rather than in geography. Careers, college, and unexpected detours often require us to move far from the ones we love. During the course of life, however, some people make the conscious decision to remain close. Some families experience situations that keep them together both in spirit and proximity.
Joel and Paige Doub, a brother and sister from Denver, CO, led healthy, suburban lives until 1985, when Joel was diagnosed with high-risk acute lymphocytic leukemia (ALL). The diagnosis threw Joel, Paige, and their parents into a tailspin. “We went from this idyllic family—two kids, living in the suburbs, daughter’s in a lot of dramatic plays and things like that, son plays football—to holy (moses), everybody’s dying,” Joel says now.
Twelve-year-old Joel, who had never suffered an illness worse than a cold, immediately began a chemotherapy protocol for high-risk ALL. He went into remission almost immediately and stayed there for two and a half years while he underwent chemotherapy treatments. Three months short of finishing the protocol, however, Joel relapsed. Doctors started him on a different chemotherapy regimen that brought him to remission for only a week before he relapsed again.
His doctors recommended what was then a risky, groundbreaking procedure: a bone marrow transplant (BMT). “From a medical point of view, it was a very exciting time. From a patient point of view, it was a pretty terrifying thing to be involved in because it was pretty rare,” Joel says. As he saw it though, “There were two options for me: do nothing and die in pretty short order or do this.”
An oncologist can only perform a BMT with donor bone marrow that closely matches that of the patient. The first potential roadblock is finding a suitable bone marrow donor. Ideally, a match is found in the patient’s immediate family—the cancer patient’s chance of bone marrow rejection and other complications is higher with unrelated donors. Within families, the chance of finding a match is only one in four. Fortunately, Paige turned out to be the perfect match.
Paige, three and a half years older than Joel, was a senior in high school at the time. When Joel relapsed, she grappled with the significance of that term. “I was trying to find out what ‘relapse’ meant at that point … The day they took blood from my mother and father and I (to find a match), I don’t think I’d ever had blood drawn before that. I had no understanding of it.” A couple of days later, when her high school choir teacher passed her a note reading, “you’re a match,” she sat in class thinking, “what does this mean?”
She figured it out pretty quickly. Because the procedure was still in clinical trials, and Paige was just shy of her 18th birthday, the law required that she go in front of a judge to get permission to donate bone marrow to her brother.
Looking back at that time, Paige recalls being perplexed by people who would tell her, “you’re so lucky” and “it’s so wonderful that you can do this.” “People made it seem like there was some sort of a choice involved and there wasn’t. It was just sort of the next step on the obvious path,” she says.
Joel, meanwhile, was sicker than he had been since his ALL diagnosis. He and his family visited a specialist in high-risk transplants, Dr. Michael Trigg, at the University of Iowa. After the hospital accepted Joel as a patient, which he describes as a process similar to the college admissions process, everyone involved agreed that the BMT would take place in a month. Joel got sicker upon his return to Denver, so his doctors decided to move quickly. Mere hours later, Joel and his mother left for Iowa.
When Joel considers his feelings at the time about the impending BMT he says, “I always felt pretty empowered by my own control. Whether in hindsight that was artificial or real, I always felt like I was pretty much in control. I never really felt like I was going to die.”
He began his pre-transplant regimen, which included more chemotherapy than he had experienced previously. Under usual circumstances, to rid the body of cancerous cells, doctors administer as much chemotherapy as possible without destroying the immune system or stem cells. With BMT patients, however, the chemotherapy needs to entirely wipe out the patient’s stem cells and immune system in anticipation of the donor’s bone marrow.
Three weeks later, Paige was in Iowa. The procedure was more involved for her than for Joel, who received his sister’s bone marrow intravenously. The doctors gave Paige an epidural and made about 11 one-centimeter incisions in her hips. They harvested the marrow from her hip bones, making six to eight bone marrow aspirations per incision.
The epidural wore off quickly enough for Paige to sit with Joel while her bone marrow dripped into his arm. “It was really interesting as part of the transplant to be very aware of knowing exactly the day that he became not just my brother but my friend … and not just my friend, but one of my best friends,” Paige says now, trying to put words to an experience neither of them can ever fully share with another person.
Before BMT, Joel says, “our family was close in a normal sort of way, but not extraordinarily close. I think events like this are a crucible for family relations. My mom went to Iowa with me and Paige stayed in Denver with my dad. In that regard, practically, we did split up. But we’re a lot closer than we were before.”
Twelve years later, Joel is a healthy 27-year-old. He works to sign people up for clinical trials and both he and Paige worked as counselors and volunteers at the Hole in the Wall Gang camp, Paul Newman’s camp for pediatric cancer and hematology patients. Talking about ALL and his BMT is “almost academic at this point … It feels like a different lifetime almost. It’s like talking about when I was 10 and in Little League.”
Paige, after living all over the world, recently moved to Boston. “I moved to this city because this is where Joel is.” And though she jokes that he is going to kick her off his couch soon, she knows that squabbles like this could never penetrate the depth of their relationship, which only strengthened with the moment they shared in an Iowa hospital room 12 years ago. The moment bonded them in spirit, leading them to apartments hundreds of miles from their hometown, but just a half-mile from each other in Boston. Their hearts are even closer.