After 18 months battling leukemia with drugs and radiation, 13-year-old Will Dickes of Rochester got an unexpected gift for the New Year —- a powerful little package of healthy bone marrow with the potential to wipe out the cancer that he has been fighting.
That a donor was found for Will at all is close to miraculous, since he is a Korean adoptee with no known birth relatives.
Before Will got the marrow donation January 7, he had been in and out of Mayo Clinic since June 2008 undergoing chemotherapy and radiation treatment for t-cell acute lymphoblastic leukemia. His doctors there recommended a marrow transplant in September because his body was not responding to the treatments as well as they had hoped.
The donor was found from the National Marrow Donor Program (NMDP, also called Be the Match), from a volunteer donor base that includes seven million people from the U.S. and other countries. The donor’s identity is kept private for at least a year, according to Be the Match, but the family was told the donation came from an “international donor,” according to Pat McCarthy, a family spokesman. The Dickes’ also found out that the donor was a young man, presumably an ethnic Korean (although they were not told that).
Since October, Will has been a candidate for a bone marrow transplant. In late September, immediately after they heard he would need a transplant, family friends Patrick and Kathy McCarthy of Rochester, parents of two Korean teenage boys, signed on as volunteers for the NMDP. The Korean Association of Rochester also expressed interest in helping out.
On October 4, McCarthy arrived at the Korean Quarterly 5K Chusok Run/Walk in St. Paul, carrying a newly-minted poster with Will’s photo and information about the program.
The McCarthys were to be catalysts for a chain of events that got the whole Twin Cities Korean American community involved. At the event, they met Brooke Newmaster, artistic director for the Chang Mi Korean Dance and Drum studio in St. Paul. She immediately volunteered her studio for a “Be the Match” event, which took place October 4.
At the event, people got matched to be donors by filling out a form and giving sample cells. The cells are gathered with a big cotton swab that scrapes a few cells from the inside of the mouth. About 50 prospective donors signed up at that event.
The event was covered by WCCO-TV in Minneapolis. Korean Association Executive Director Insung Oh came to the event and met Steve Lovelace, the local contact person for Be the Match. He asked about how the Korean Association could help.
Oh, through the Korean Association and its president Daniel Dae-sik Ahn, promoted and carried out events at four different Korean churches in the Twin Cities area in November and December.
Congregations were very receptive, Oh said, and a total of 144 people signed up to “be the match” for Will. The St. Francis of Assisi Church in Rochester also did a match event sponsored by the Korean Association of Rochester
At the Korean Evangelical United Methodist Church on December 13, the Council of Korean Churches of Minnesota collected an offering of $1,024 at its hymn singing festival, and donated it to the Dickes family through the Korean Association. Christ Korean United Methodist Church in Woodbury, where Oh organized a marrow donor drive in late November, also donated a recent offering of $1,000. Attendees of the Twin Cites Korean Youth rally in mid-October donated $129 from the event, which was also held at the Christ Korean United Methodist Church.
Insung Oh said he was impressed by the dedication of Pat McCarthy and Dr. John Park of the Korean Association of Rochester, who both showed up for the Twin Cities match events.
The Korean American Resource and Cultural Center of Chicago did a match event in conjunction with its 14th Anniversary Dinner in October. The Chicago area Korean American community had held several events in 2009 because there were two leukemia patients who needed a match, Oh said. A story about Will (a translation by Insung Oh of a story by Martha Vickery written for the online Twin Cities Daily Planet in October) was publicized in the Korean language media of the Chicago area, Oh said, and Korean associations heard about it through that source.
There are many factors that go into being a “match” for a bone marrow transplant. A full birth sibling (who has the same parents) of a leukemia patient has a one-in-four chance of being a match, according to information provided by the NMDR. Chances of other birth family members matching is less good. When a patient has no possible matches from birth family members, a matching donor is sought from the NMDP.
There was reason for extra concern about getting a match for Will. There are special challenges for Korean adoptees and other Asian American patients who need a non-family donor, because a match is most likely from a donor from the patient’s ethnic and racial group. Yet, only a small percentage of the donor registry are Koreans. Of seven million potential donors on the Registry, about 65,000 on the Be the Match Registry identified themselves as Korean. The recent Minnesota/Chicago donor campaign upped that total by a fraction.
Beyond the racial and ethnic group match, there must be very exact matches in a blood protein known as human leukocyte antigen (HLA). HLA are proteins —- or markers —- found on most cells in the body. The immune system uses these markers to recognize which cells belong in the body and which do not. The markers must be close in order for the body to accept them as its own cells. Therefore non-family donors for any transplant patient are few and far between.
From June 2008 to March 2009, Will received chemotherapy and some radiation. He was supposed to be on a maintenance regimen after that, but in May 2009, he showed some signs of relapse. His treatments were ramped up in July. “The Mayo Clinic doctors consulted with their colleagues all across the nation, and decided because of his quick relapse —- two and a half or three months —- that a bone marrow transplant looked like the best course of action,” according to Steve Dickes, Will’s father.
Rochester has a very diverse community, which includes a small and close-knit Korean American community, along with a community of Korean adoptees and their families. Jointly, the two groups run Camp Moonhwa, a culture camp for Korean adoptees and their families. There is also a taekwondo school, the Park Institute of Tae Kwon Do, in town. Steve and Will both worked their way up to black belt in taekwondo.
Steve, who works as a software engineer with IBM, assisted as a taekwondo instructor at Camp Moonhwa until 2008. Loretta served on the Board until last year.
After Will’s hair fell out, his mother Loretta bought him a cap to wear, with the name of a band he did not like. That cap, with silvery duct tape stuck over the name of the band, has become Will’s signature look during his treatment. He had his 2009 school ID picture taken with his hat on. The duct tape fashion statement has become a source of family humor. Will even has some bandaids that look like duct tape, which have amazed and horrified his nurses.
The news that not one, but two donors had been found was electrifying news, received just before Thanksgiving, Steve said. “It was utter excitement coupled with utter fear, not knowing how it would all work out and what he would experience,” he recalled. The cells arrived by medical courier from the donor’s country on January 7, and Will got the donation that day.
Will went to school every day for the two weeks preceding Christmas. On the last day of school before his transplant, Will’s class took a photo of him with his classmates. In solidarity, each student wore a black knit cap with a piece of signature duct tape stuck on it.
He had two chemotherapy and three days of twice-a-day radiation to prepare for the transplant “which he breezed through,” Steve said.
For the donor, the after-effects of the donation are few; the body replaces that five percent of bone marrow in about four weeks. Will has had several bone marrow aspirations for diagnosis purposes in the last year.
For Will, the donation will require a 30-day stay in the hospital while his doctors monitor how his body is accepting the transplant. If it is a good match with only a little rejection by the body, Will’s chances of a complete recovery are good. A week after the transplant, Will was experiencing the nausea, fatigue and uncomfortable mouth sores, all aftereffects of the radiation, which were expected. He has had no alarming or unexpected post-transplant reactions so far, Steve said.
Steve said Will misses his friends; it will be April before he will be infection-resistant enough to go to school or any public place. But Will is realistic, Steve said. “Somebody asked him at the time of the transplant what he thought about it and his response was right to the point. He said ‘well, it’s going to save my life.'”
For more information on the Be the Match, visit: www.bethematch.org.