Bone marrow and miracles: Meeting my match, Mailyna

Kristine Sydney

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'All I had to do was show up to an hour-long procedure to give Mailyna, a former stranger, a child, a shot at the physical freedoms I’ve enjoyed'

I am shaking behind the sliding doors at Kaiser Permanente Medical Center  in Oakland, California. Behind the glass, I can see the profile of Mailyna Mayate, who received my bone marrow a year ago. It is incredible to me that a procedure that took only an hour and two tiny Band-aids, the kind used for paper cuts, could save a life.

I am trying to catch my breath. We were not allowed to release any specific information (our name, our location) about ourselves until a year after the transplant. This is the first time we’re meeting.

EMOTIONAL MEETING. Kristine Sydney meets her bone marrow recipient Mailyna for the first time. Photo by Duy Ho/Asian American Donor Program

The fact that we, two genetically perfect matches, are standing only meters away from each other –  a 36-year-old Filipino who flew in from the East Coast and a 12-year-old Filipino-American on the West – is its own miracle.

According to the Asian American Donor Program (AADP), “The odds of matching an unrelated donor are between 1 in 100 and 1 in a million. Currently, only 25% of the National Registry represent the racial minority communities; therefore, the current odds for a minority patient’s finding a matching unrelated donor may be closer to 1 in a million.”

I do not use the word “miracle” in the religious sense here (though embracing her for the first time was awesome) but rather, to describe our matching as a statistical improbability. 

Our reunion received media attention in the San Francisco Bay Area and the Philippines not only because Mailyna’s recovery is beautiful and inspiring, but also because two ethnic Filipinos being each other’s perfect match is so rare. Look up “Filipino, bone marrow” videos on YouTube and search for Filipino bone marrow appeals online, and you will find many, but, as far as I can tell, I haven’t found another story online about a match that was perfect and successful like ours.

Every year, more than 12,000 people are diagnosed with life-threatening blood cancers, like leukemia and lymphoma and other diseases like Mailyna’s beta thalassemia for which a bone marrow transplant from an unrelated match is the best and often only hope of a cure.

70% of patients do not find their match within their own family so they must depend on a global registry, of which Filipinos make up only 0.6%.

Donors and recipients need to match, or the recipient’s body will reject the donated cells. Finding a match depends on your ethnicity, and the brutal reality is that if you are Filipino, your chances of finding a match, your cure, are even more difficult. The Philippines does not currently have a registry.

The nonprofit the Asian American Donor Program (AADP) conducts outreach and donor registration drives in ethnic minority communities, but as I’ve learned from helping run a bone marrow drive where I live, it is difficult to encourage people to sign up. 

They smile and tell us we’re doing important work, but most walk away, scared off by the word “donor”, anxious they’d be giving up something irreplaceable like a kidney; taking weeks off from work or school; or shortening their own lives like the donor characters from Ishiguro’s book, Never Let Me Go.

None is true but it’s challenging to change the public perception of the bone marrow donation process. The truth is that most don’t really think about the need to register unless they or someone they love needs it.

I, too, was ignorant about the process until I received a call about being someone’s match.

Those who register do so for many reasons: I’ve heard stories about people who signed up to support a colleague or a family member. I watched one in which a teacher offered his students extra credit points if they registered.

I incorrectly assumed I was not eligible to be a donor because my travel history precludes me from donating blood. 

But in April 2013, I was inspired to sign up because only a month earlier, a former student and advisee, Elizabeth, had passed away from brain cancer. She was brilliant and kind and, because of our similar skin tone, strangers had, on a handful of occasions, confused us for sisters.

My chest ached when I was walking home from work and saw the poster advertising the bone marrow drive around the corner. It had photos of children, all ethnic minorities, who needed to find a match. I had registered, in large part, to honor Elizabeth, who was only a child when she died 

I donated bone marrow on May 7, 2014. Most donors donate peripheral blood cells, which is similar to donating blood, and I was one of the 25% that gave bone marrow, a short procedure that, because of unfounded rumors and myths about the debilitating pain and recovery time, scare people away from registering. It is for these reasons, I think, that many of my Filipino friends, in particular, called me a hero, a bayani.

As moved as I am by the compliment, it suggests that what I did involved some sacrifice or risk. 

But there is nothing heroic about what I did. Giving bone marrow didn’t require anything from me but several hours. My being picked to be Mailyna’s donor only confirmed my own genetic luck: my entire life, I’ve seen a doctor an average of only once a year for an annual physical.

For this gift of my health, all I had to do was show up to an hour-long procedure to give Mailyna, a former stranger, a child, a shot at the physical freedoms I’ve enjoyed. 

When the anaesthesia wore off, the first person I saw was my husband whom I asked, “Have they done it, yet?” I felt little pain and only nausea, a side effect of the anaesthesia. Two days after my overnight stay at Massachusetts General in Boston, I was at brunch with my husband and sister. Less than two weeks after my bone marrow harvest, I was dancing to “Get Low” at another sister’s wedding. I’ve never felt like a hero.

The real hero here has always been Mailyna, whose pictures and videos I watched and rewatched until I met her in person.

She is a lesson in grace and courage for any of us. In all of them, even when she’s hurting, her eyes are twinkling. In one video, her younger sister Jassy sings, “Do You Want to Build a Snowman?” while Mailyna, who is in isolation, listens on the other side of the door, their stuffed animals pressed against the glass window. Even in her loneliness, Mailyna still acted the part of the older sister. 

It is hard to believe that, that was only a little over a year ago.

For almost 12 years, she was getting blood transfusions every 3 weeks, a process that took an entire day and interrupted her school work and the activities she loved.

Then a few days ago, Mailyna’s mother Mia posted a video of Mailyna standing on a ledge overlooking the water at Slide Rock State Park in Sedona, Arizona.

In a neon lime bikini top, she stands out against the red rock. There is a brief pause as she gains her footing before she runs, holds her nostrils shut with her left hand, and leaps off into the water below, her right arm high above her head. 

In slow-motion, she looks, for a moment, as if she is flying. – Rappler.com

Kristine Sydney is a private high school English teacher in the United States, where she has lived for 20 years. Born in the Philippines and raised in Saudi Arabia, she attended boarding school and college in the US, where she practiced her Filipino by reading Liwayway. She writes about immigration, Air Supply adoration, and her intercultural relationship on her blogkosheradobo.com. Follow her on Twitter@kosheradobo.

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