Salt Lake City resident John Philpott was diagnosed with a very aggressive form of plasma cell leukemia in 2012. He learned his best option would be to rely on a stranger for a bone marrow transplant the year after he was diagnosed.
“My doctors put it very simply to me. They said, ‘You can go through the very rigorous process of receiving a bone marrow transplant or you can die,'” Philpott said.
Julianne Grose, a BYU professor of microbiology and molecular biology, said bone marrow stem cells produce an individual’s blood, which includes the three essential cells within the blood: red blood cells, white blood cells and platelets. When certain diseases, such as cancers of the blood, overtake the body, these cells must be replaced.
“The lymphoma and leukemia cells are so aggressive that they’ve taken over the healthy cells in that person’s body, so there’s no way to overcome the leukemia or lymphoma without rigorously treating that person to get rid of the unhealthy cells completely,” Grose said.
Philpott, who was 40 years old at the time of his diagnosis and a father of five children under the age of 12, decided he was “not willing to check out without a fight.” He turned first to his siblings who, unfortunately, were not full matches. About 70 percent of patients do not have a full donor in their family, according to Be The Match, a national marrow donor program.
Philpott’s next option, like many other patients’, was a complete stranger, a match found through the bone marrow registry.
The donor donated his peripheral blood stem cells, a more commonly used procedure and less invasive than a traditional bone marrow surgery. Philpott received the transplant on May 29, 2013 after going through four months of chemotherapy and preparative treatments.
Grose, whose brother-in-law’s death from lymphoma motivated her involvement with bone marrow donation, explained that the process of receiving bone marrow or a stem cell transplant is considered one of a patient’s last options because it’s so rigorous.
“They have to receive treatment, chemotherapy and sometimes radiation that will actually kill their own marrow stem cells so that it doesn’t compete with the replacement and then the replacement is given,” Grose said.
Philpott contacted his donor to thank him one year after his successful bone marrow transplant, or what he calls his “transplant-aversary.”
“The thing I wanted more than anything was to thank him directly for the gift of life and hope that he had given me and the health that I was gradually returning to,” Philpott said.
Phillpot and his donor exchanged emails, met in person and spent the weekend together almost three years after the initial donation.
“It was just kind of surreal to be sitting there talking with the guy whose marrow now fills my bones and whose blood literally flows through my veins,” Philpott said.
Bone marrow donation is separate from organ donation, and requires an individual to sign up for a separate registry.
In a situation similar to that of Philpott’s donor, two BYU students, Andrew White and Hannah Lowry, have had the opportunity to donate their own peripheral blood stem cells. According to Be The Match, “doctors request donors in the 18-44 age group more than 95 percent of the time” because cells from younger donors lead to better chances of long-term survival.
White, president of the BYU chapter of Be The Match, donated last year in Northern California. Lowry donated in Washington D.C. in May 2016, three years after initially joining the registry. Both White and Lowry traveled out of their home states to donate because not all hospitals are equipped for bone marrow donations.
Hannah’s mother, Geri Lowry didn’t know very much about bone marrow transplants beforehand and was initially apprehensive when she heard about Hannah’s decision to donate.
“I was very nervous at first thinking there was some type of a fraud thing going on and I really had no idea and I was a little leery about it,” Geri said.
Geri, a nurse, was encouraged after talking to friends who had heard about the organization and knew the procedure, and eventually accompanied her daughter to D.C.
Hannah explained the process of donating stem cells instead of straight bone marrow actually reduces the pain of the past.
“(It’s) a lot less painful than it used to be because they’re not drilling into you and getting actual bone marrow. Usually it’s just the stem cells needed to grow bone marrow,” Hannah said.
In the days leading up to the actual donation, donors are injected with Filgrastim, a drug White describes as helping “the stem cells in your bones to reproduce a lot and move into your bloodstream.” White admitted those first few days were painful and he felt achy and uncomfortable.
White described the actual donation day “like donating plasma or donating blood, except they put a local anesthetic in my arm so I didn’t even feel the needles going in.”
He laid in a hospital bed donating for about six to eight hours, while Hannah said her process took about four and a half hours. White said he felt well enough to be active and hike the day after donating.
“I felt good enough the next morning that my family had to keep stopping me from going running because I felt fine,” White said.
Both White and Hannah said they have kept their names on the registry and would donate again.
Philpott now works as the Community Engagement representative for Be the Match over certain colleges, including BYU. He said over the last 14 months, more than 600 BYU students, faculty members and staff have been added to the Be the Match registry, and while this number is encouraging there is still work to be done.
“While that’s a great number, given the number of very selfless, very giving individuals that make up the student body at BYU, it’s still just a drop in the bucket compared with what we really need,” Philpott said.
BYU students can join the Be The Match registry online and are encouraged to enter “BYU” when asked for a promo code. This promo code will allow representatives like John Philpott to accurately track how many students, faculty and staff from BYU add their names to the registry. Students who are interested in donating bone marrow can also contact Philpott directly by emailing him at firstname.lastname@example.org or call him at 801-520-1383.
White encourages fellow students to consider donating bone marrow or peripheral stem cells because for some patients “this is (their) only chance of surviving.”
“It’s not like blood type matching. It’s a lot more of a complicated genetic match and some of the students might be the only match for someone in the whole world,” White said.