“Go the Distance” isn’t just a song from Disney’s “Hercules” for former student Marie Jordan — it’s the anthem of her decision to temporarily leave her studies and become the primary caregiver for her sister Rebekah Jordan, who is battling leukemia.
Jordan learned of her sister’s diagnosis this past May when her father called her on a Friday at 2 a.m. After surprising her family with a visit home the next day, Jordan said she realized she didn’t feel right going back to school while her sister began her fight against type two chronic myelomonocytic leukemia, known as CMML-2. This form of blood cancer is rare, Jordan said, as it usually is diagnosed among patients who are 65 or older.
The average CMML-2 patient is given a 40 to 60 percent chance of beating the disease. Bekah, who is 25 years old, has a better chance due to her youth. She needs a caretaker to be with her every step of the way since her life-saving bone marrow transplant, which she received on Sept. 26.
Jordan said she knew someone would need to be there for her sister. Her parents, who are cancer survivors themselves, were supportive, but she felt a need to be there on a more permanent level for Bekah.
“I was nervous about broaching the subject with her, because it’s a big deal,” Jordan said. “I didn’t want to force myself on her if she already had someone in mind. I didn’t want to use [the word caretaker], because it makes her sound like an old person, and I didn’t know if that would be offensive.”
Despite her nervousness, Jordan made her offer shortly after she learned of her sister’s diagnosis, when the two of them were driving together. After what she called her “proposal,” the “Hercules” theme song coincidentally started playing on the radio.
“We’d just watched ‘Hercules,’” Jordan said. “The song [‘Go the Distance’] came right on. It was like, alright, it’s decided.”
Twenty-year-old Jordan immediately withdrew from the university, though she was already registered for her junior year of classes this fall and had just declared a concentration in jazz for her major of music education. In addition, she was elected music director of the coed a cappella group OwlCappella for the 2013-2014 school year.
Now, she lives in an apartment in Salem, Mass. with Bekah, who returned home last week after her blood cell count reached an acceptable level to leave the Brigham and Women’s Hospital after her bone marrow transplant.
“It’s hard to stay positive all the time,” Jordan said. Although she said she can’t imagine handling her sister’s illness any other way, there are moments when the pressure becomes oppressive.
“It’s obviously a roller coaster,” Jordan said. “I was kind of a busybody at Temple. I took nine classes and was in OwlCapella, so we had gigs a lot, and I was doing music director-type stuff as assistant music director. The music director was student teaching so he wasn’t around much.”
She recently started working at Atomic Café, where Bekah, an actress and theater instructor, worked prior to her diagnosis. The coffee roasters now offer a “Bekah Blend,” Jordan said, from which all proceeds go toward Bekah’s treatment.
Jordan plans to return to the university to continue pursuing her degree next fall, depending on Bekah’s health. Bekah will spend the next year recovering, namely allowing her body to adjust to the transplant. The first 100 days, which are now underway, generally indicate whether her immune system will accept or reject the bone marrow.
She’ll need 24-hour care, Jordan said.
Advisers informed Jordan that she would have to re-audition for her program, but that isn’t the critical issue she will face if she’s able to return.
“My dad is retired [and] my mom doesn’t have a job,” Jordan said. “Obviously this wasn’t in the spectrum of planning. It’s been really, really hard.”
The family has fundraised for Bekah’s treatment, with one event in particular called the “Bash Leukemia Bash,” where friends paid an attendance fee to see live theater and readings at Gordon College, where Bekah spent her undergraduate years. Since Bekah’s homecoming, Jordan said she probably won’t be able to continue working.
“For a year after her transplant, she can’t go outside,” Jordan said. “She can’t grocery shop, go to her favorite thrift store or go to Atomic [Café]. I’m going to need to keep a medical journal, because the doctor is going to be asking me what changes.”
Though she wasn’t a match to be Bekah’s bone marrow donor, Jordan will now be there every step of the way, unless she is able to coordinate with her parents in order to temporarily leave them in charge while she is away.
Jordan’s friends in OwlCapella plan to help her return to the university in whatever capacity they can by donating to Jordan family’s fundraiser website for Bekah’s treatment on YouCaring.com, a free online fundraiser site for medical purposes.
OwlCapella’s upcoming free concert in Room 200A of the Student Center on Saturday, Oct. 26 at 7:30 p.m. will donate all proceeds from general donations and CD sales to Bekah’s YouCaring.com site.
Kevin Chemidlin, a senior computer science major and the general manager of the a capella group, said he was impressed by Jordan’s immediate dedication to her sister’s care.
“I could tell there was no question about what she was going to do,” Chemidlin said. “She left a long post in our Facebook page explaining what had to be done. Obviously everybody misses her, she’s been in the group for two full years.”
Chemidlin said he is concerned about Jordan’s reentry into the university.
“I think she’s an absolutely exceptional person,” he said. “It’s a downright tragedy that this has happened to her. But at the same time, she has stepped up so incredibly — it’s so inspirational what she’s been able to do. For that to negatively impact the trajectory of her life is a crime.”
Jordan said some of her professors have been supportive of her decision to defer from the university for the year. Her voice instructor, Professor Sheryl Woods, said she hopes Jordan will take strength of character from this experience.
“I occasionally shoot an email her way,” Woods said of her continuing friendship with Jordan. “We talk on the phone once every few months.”
Jordan recalled an email she received from Woods sending her well wishes, which she said was incredibly touching.
Woods said she believes Jordan will gain critical perspective in her year as a caretaker, despite the obvious challenges the experience presents.
“She is getting an experience that many students don’t get until after college,” Woods said. “Sometimes the good things get in the way of the best things. You have to figure out what life is really about.”
Erin Edinger-Turoff can be reached at firstname.lastname@example.org on on Twitter @erinJustineET.