SAN DIEGO – More than 19 million people across the globe have registered to be bone marrow donors, but not one of them is a perfect fit for Kalea Ramos of Chula Vista, Calif.
Already challenged by round after round of grueling chemotherapy due to a rare “mixed phenotype” leukemia diagnosis, the 6-year-old and her parents recently learned that her heritage makes it extra difficult to find a donor with the right genetic characteristics to provide the best odds of success if a transplant is necessary.
Her mom Angie, is of Caucasian heritage, while dad, Mike, was born in the Philippines, so Kalea’s inherited genes are a mixture of the two. Neither Kailen, her 11-year-old brother, nor Keanna, her 8-year-old sister, inherited the right mix of genetic markers to donate to their sister.
“When we had to tell them, it was devastating because they both so badly wanted to be her match,” Angie Ramos said.
With no help available in their household, Kalea’s parents are forced to cast a wider net, reaching out with the help of Be the Match, the world’s largest bone marrow registry, to find someone with a genetic makeup similar enough to donate.
Luckily, they don’t have to focus narrowly on only those of mixed Filipino and Caucasian heritage. Filipinos share enough genetic similarities with those of Asian ancestry that the search can cast a broader net. Anyone of mixed Caucasian-Asian heritage could be a solid match.
Joining the registry is as simple as sending in a cheek swab saliva sample and anyone who would like to give it a try can visit join.bethematch.org/Kalea18 for more information.
The ideal candidate, said Mary Halet, director of community engagement for Be the Match, is a young man aged 18 to 44, though the younger, the better within that range.
Women, she said, especially those who have been pregnant in the past, tend to have antigens in their blood that can make a condition called “graft-versus-host disease” more likely. That’s where transplanted stem cells re-colonized a recipient’s bone marrow and produce a new immune system that, because it’s not a close enough genetic match, ends up attacking the recipient’s own healthy cells.
There are two possible collection methods for donors who are matched to a recipient in need.
A newer method that works well for adults uses special equipment to filter stem cells from a donor’s blood while an older, more traditional method, which is preferred for children, is more medically intensive.
“Traditional marrow collection most often used for children is a surgical procedure,” Halet said. “It happens in an operating room, and that’s when the bone marrow is extracted from the pelvic bone and done under general anesthesia. This method carries less risk of graft-versus-host disease, and that’s why physicians who are caring for children tend to want to use cells collected in this way.”
It’s important, then, for potential donors to know ahead of time what they’re signing up for.
Many go ahead with the cheek swab and have their information added to the registry, then balk when they get a call that they’re a match and are told what donation entails.
Having good matches back out, Halet said, is emotionally devastating for recipients and their families who are already dealing with the severe medical problems that caused them to need a transplant in the first place.
“Unfortunately, it happens far too often,” she said. “That’s why the commitment part is so important. When individuals join the registry, we really want them to be committed to any patients that might need them.”
For anyone who gets a little reluctant at the idea that they might have to undergo a surgical procedure, Angie Ramos makes it clear that it’s really no big deal. Kalea, she said, has proven that point to her over and over again.
“She’s already had five bone marrow aspirations, and she’s only six,” Ramos said.
Be the Match, she said, is committed to helping donors give of themselves with as little friction as possible.
“Whether it’s time off needed from work or perhaps they’re a student and they need help communicating with their professors, whatever it might be, we are very adept at resolving those logistical hurdles for people,” Halet said.
While the family’s medical knowledge means that they’ve got plenty of practice with the daily routine of caring for a cancer patient, that doesn’t make the process any easier on an emotional level.
Asked on a recent weekday morning what has been the toughest part of having cancer, Kalea replied “Sundays” in a small voice. That’s the day that her mom has to change the sterile dressing on the medication port in her chest. Chemo makes skin extra sensitive, so Sunday dressing changes tend to be extra stressful.
“It’s pretty painful, but she’s so tough,” Angie Ramos said.
Mother and daughter get through it watching Taylor Swift videos and holding tight to make the pain go away.
At the moment, Kalea’s dearest wish is to take a trip to Hawaii to get a good look at sea turtles. It’s pretty clear that someone would find a way to make that happen but, at the moment, Kalea’s treatment protocol requires her to be no further than a one-hour drive from the hospital.