Friends & family organize donor registration drive in honor of MHS student with leukemia

“I don’t want to just sit here and watch,” Minot High School student Haley Wentz had told herself, after learning her friend and classmate Peter Wilson had been diagnosed with leukemia in February. With a bit of research and an unusual amount of initiative for a person her age, Wentz helped bring the fight against leukemia to Minot.

Wentz contacted the New York-based non-profit DeleteBloodCancer, the American offshoot of the German-based Deutsche Knochenmarkspenderdatei (DKMS), an organization which globally works to register and organize bone marrow donors. Domestically, DeleteBloodCancer-DKMS submits the samples they take to the National Marrow Donor Program (NMDP), which catalogues a referential database doctors can use to find donors for their patients.

Cobbling together a coalition from DeleteBloodCancer-DKMS, other students, Minot’s Figure Skating Club, Minot State University, and a number of other local townsfolk and businesses, Wentz has helped organize a bone marrow drive inspired by Peter Wilson’s experience, to take place Saturday from 10 a.m. to 4 p.m. at the Magic City Campus gymnasium. She thinks the drive will be a great way to raise awareness, educate the public, and of course recruit new donors. “We’ve had such a great response from the town” so far, said Wentz.

Jaimie McMullen, an assistant professor at MSU and member of the Figure Skating Club, helped organize a silent auction hosted by the club. Up for bid were items chipped in by local skaters, the MSU athletics department, and area businesses such as Gourmet Chef or Velva’s Bead Unique. Together the auction raised more than $3,000 for the upcoming drive, to cover the costs of registering prospective donors.

The process is quick and painless. Unlike the old-fashioned tests that required blood sampling, the drive will feature a brief mouth-swabbing. “Our goal is to get 500 cheeks,” said McMullen. However, she also noted that previously-registered donors need not apply; reregistration would add to redundancies in the register, for instance pulling up two or three “matches” for essentially the same person’s genetic material. There is a bit of paperwork as well, but should take no more than 10 minutes.

Leukemia is a form of cancer that targets the blood and bone marrow, affecting the body’s immune system. What are being looked for are your human leukocyte antigens (HLA), a set of genes responsible for various immune system functions located on the sixth chromosome. These are compared to see whether two people might make a compatible transplantation. This data is collected by the DKMS and submitted to the NMDP, being held on file until the prospective donor turns 61-years-old.

Ann Wilson, Peter’s mother, is with him at the Rochester Methodist Hospital in Minnesota, one of the two hospitals at the world-renowned Mayo Clinic. “He’s doing very, very, very well,” she said in an interview. The day of his diagnosis, the Wilson family had been on their way for a short vacation. What was to be a weekend outing turned into an immediate detour to Mayo lasting several months.

She is very grateful to the staff and medical personnel at Mayo, who she says have been “very collaborative” on such a complex procedure. “It’s an amazing, amazing place.”

When he’d arrived to the center, Peter was in a highly delicate state, his immune system debilitated by a lack of white blood cells. “Pete’s leukemia is a very aggressive type of leukemia,” his mother explained. Once his condition was stabilized and his health somewhat restored, he began a series of high-level chemotherapy targeting the malignant cells.

Meanwhile, his particular HLA was run against the international registry collected by organizations such as the (DKMS) and (NMDP). They collect samples from registered donors worldwide, comparing these to that taken from patients such as Peter. The Wilsons were fortunate, with not one but two matches being found within only a couple of weeks; generally the search can months, with no guarantee a suitable donor can be located. “It’s been nothing short of a miracle.”

An avid sort of student, Peter already had enough credits to graduate high school on time next month. But when his peers are mounting the podium to receive their diplomas, Peter will be in Minnesota, preparing for his stem cell transplantation on May 13. Afterward because of the recovery process he will have to defer attending college in the fall, but will be able to return to Minot by then. Ann Wilson said her son hopes to attend Tufts University, in Boston.

Until then there seem to be no hitches forthcoming. “We’re very optimistic,” said Wilson.

Depending on the disorder and inability for the patient’s own cells to be extracted and reimplanted after chemotherapy, when their time comes donors will be asked to give either bone marrow or blood for the hematopoietic or peripheral blood stem cells found in each, respectively. Removed stem cells are then injected into the patients’ bodies after their chemotherapy is complete, where in their various ways the new cells replace the ablated ones.

Minot resident Greg Stack had himself donated bone marrow back in Oct. 2009, saving the life of a 9-year-old boy with leukemia. Stack had entered the NMDP system during the late 1980s, while working for United Blood Services. The notification had not come out of the blue though; the program had periodically kept up with Stack over the years, verifying his whereabouts and willingness to remain on register.

Received the news that he had come up as a match, he wasted no time getting in a second sample. When he was deemed a suitable donor, they asked if he would be willing to come down to the University of Minnesota Fairview for a physical. “Of course I said yes,” said Stack. Expenses paid, he was flown down for a thorough examination. He passed, and further evaluation found Stack and the boy “were so well matched, we could’ve been brothers. It was pretty amazing.”

For one week prior to the transplantation, the recipient undergoes one final series of heavy chemotherapy which, while killing all the defective cells also renders their body wholly unable to produce white blood cells. “At that point there’s no turning back,” Stack explained. His own end of the procedure was less life-threatening.

“It’s pretty simple actually. You don’t feel anything.” Under anesthesia, doctors drill into both sides of the pelvis, harvesting the marrow stored there. “For me it felt like two black and blue marks on either side,” he recalled, explaining that the procedure happened on a Thursday, keeping him overnight. He flew back home the next day and was able to come in to work that Monday for a half-day, working the rest of the week. After only a few weeks the body fully replenishes its missing marrow.

“Nothing to it,” said Stack. “It’s a pretty simple thing to do for saving somebody’s life. It’d do it again in a second.” After the procedure, the NMDP keeps donors updated periodically on the donee’s condition; Stack is glad to say the boy is fine, “doing everything a 12-year-old should.”

Peripheral blood stem cell transplantation is a different process, revolving around apheresis, similar to donating plasma. Blood is extracted and run through a centrifuge, where the stem cells are harvested before the blood is returned to the donor. The outpatient procedure is supposed to have a shorter recovery time than a bone marrow harvest, though the medication one has to take the week prior in order to spur cell production, Filgrastim, commonly has side effects symptomatically similar to flu.

Unlike donating blood or plasma, bone marrow registration needs a sense of commitment. As long as one is registered in the system, at virtually any time a person suffering from leukemia or similarly life-threatening illness could prove a match. Potential donors also ought to be in reasonable health, meeting the guidelines laid out at the websites of DKMS (deletebloodcancer.org) or the NMDP (marrow.org). Additional information and the option to donate money rather than body are also available at those sites.

While Peter has found his donors, thousands of other patients like him are still searching. Organizers invite people willing to register as a donor to attend the drive this Saturday, from 10 a.m. to 4 p.m. at the Magic City Campus gymnasium.

There will also be a marrow drive at the University of Minnesota, Morris, on May 1 and 2, from 12 to 6 p.m. The event will be in association with Team Be The Match, another non-profit that organizes donor drives for the NMDP registry. Their page can be found at (http://goo.gl/m7IAB).