A Marrow Match in Berlin

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On November 9, 1989, the Berlin Wall fell. People who lived within East Berlin were now free to enter and live in West Berlin. One of those people who found freedom of movement was Yvonne, who grew up in East Berlin with the Berlin Wall across the street from her garden. Her now-husband had previously attempted to escape into West Berlin just the year prior, leading to a nine-month jail sentence.

On November 9, 2014, on the twenty-fifth anniversary of the fall of the Berlin Wall, Yvonne went to a marrow registration event hosted by DKMS at the site of the Berlin Wall. A child in Potsdam, a city on the border of Berlin, had needed a marrow donation, and she—along with over a thousand other people, maybe more—joined the marrow registry in order to see if she’d be match. She was not, but she and three others who registered that day ultimately became marrow donors.

The child in Potsdam ultimately found a match. And so did someone over an ocean away: my brother, Jude.

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I’ve written on here about my brother’s and my family’s journey with cancer. In August 2010, at the age of five, he was first diagnosed with leukemia. By December 23, 2010, I became his marrow donor, when I was only 12 years old. You can read about that first bout with cancer here. About five years later, in April 2015, my brother’s cancer came back. I wasn’t able to be his marrow donor again this time, and we had to search the national marrow registry.

There was a major problem: my brother and I are both mixed-race, Filipino and white. Marrow matches, unlike blood types, are much more specific, based on your tissue type (specifically your human leukocyte antigens, or HLA type). These are genetically passed down, making it much more likely for you to match with someone of the same ethnic background as you—although not always. However, the national marrow registry in the United States is mostly white, making it much harder for people of color and especially mixed-race people to find matches. According to Be The Match, the National Marrow Donor Program, the likelihood for a white person to find a match is 77%, but for black people, the likelihood is only 23%, making it even more urgent for people of color to join the marrow registry.

Miraculously, Yvonne, a German woman from East Germany, was my brother’s match. 

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When she found out that she was a match for an American child, she headed to Cologne (Köln) because marrow donation specialists were there and not in Berlin. (As I write this post, I am currently on a train from Berlin to Cologne—a roughly five-hour journey.) She needed to spend two days there—one for a physical exam and the next for the donation itself—but because Gamescom was happening during the week of her marrow donation, she couldn’t find a single hotel with an open room. She and the friend who accompanied her spent the night in her car, knowing how incredibly important this life-saving procedure would be.

On September 1, 2015, Yvonne donated her marrow. There are two ways to donate: one is a non-surgical procedure much more similar to donating blood, in which peripheral blood stem cells are filtered out of the donor’s blood and the rest of the blood is returned. The second is through an outpatient surgical procedure in which marrow is extracted out of the hip bone. Both Yvonne and I went through the second procedure, which as I understand it is common for when the patient is a child.

On September 2, 2015, the marrow made it to Dallas, Texas, and my brother received his second marrow donation.

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“Many small people who in many small places do many small things that can alter the face of the world.”

Much has happened in between September 2, 2015, and today. What’s often forgotten in stories about cancer is that the marrow donation is not the end of the story; rather, the marrow donation is usually the key to having the chance to fight another day. Between liver complications, graft vs. host disease, and other complications both common and uncommon for post-transplant cancer patients to experience, it was certainly no guarantee that we would get to the position we are in today, where the sky isn’t completely clear but the darkest clouds have certainly parted.

On December 30, 2018, as part of my travels through Europe, I had the opportunity to meet Yvonne and her family. Together, we did a walking tour of the city of Berlin, seeing so many of the major historical sites that make Berlin such an interesting city. With Yvonne, I tried currywurst—my new favorite German comfort food!—and schnitzel for the first time. And at the end of the long, four-hour walking tour, we took a break from the cold to have glühwein—this time a non-alcoholic version: warm blackcurrant juice so that the friend I’m traveling with (who doesn’t drink) and their under-16 year old son could join in.

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Here, holding our cups of glühwein to keep ourselves warm, Yvonne told me the story of her marrow donation. As she told me, when there was a child in need that she could help, she believed she had an obligation to do so. And thank God she did, because if she didn’t, my brother would have likely never found a marrow match. So much of this story was, to me, a miracle. The odds of him finding a match were already not ideal, but Yvonne turned out to be a perfect match—ten out of ten of her HLA markers matched Jude’s. The fall of the Berlin Wall set up the conditions for my brother to find his marrow match, first allowing Yvonne and her husband to enter West Berlin and then bringing her to join the marrow registry a full twenty-five years later.

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Now, in Berlin, I have family: my brother and Yvonne very literally have the same blood. The city has since become my favorite in Europe, partially because Berlin on its own is an incredibly unique and exciting city, but also because I will have such fond feelings for the city that gave my brother yet another chance at life.

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As I close out this blog post, I want to end with how you too can make a difference. If you are between the ages of 18 and 44 and in the United States, you can join the marrow registry through Be The Match. If you are outside the United States, other organizations like DKMS operate in Germany, Poland, the United Kingdom, and Chile (as well as the United States). If you are in a different country, you can still join the marrow registry through other organizations. It does not matter through which organization you join the marrow registry, whether Be The Match or DKMS—joining the registry with any organization will make you available to people who need marrow transplants from all over the world.

Additionally, if you are in the Dallas–Fort Worth area, Children’s Health, where my brother was treated and I volunteered & interned for years in high school, hosts their annual marrow drive every February 14, Valentine’s Day.

Lastly, I wanted to share my friend Brooke’s Hero Fund through St. Baldrick’s, a charity that funds research on childhood cancer. Brooke is a Stanford student set to graduate from Stanford at the end of this school year after being diagnosed with cancer in the middle of her college career. Today, she has been accepted to medical school, and her hero fund aims to support research in young adult survivorship and graft vs. host disease; as I mentioned before, marrow transplants and cancer itself aren’t the end of the story, and very few resources have been invested in improving the quality of life for children and young adults who may be experiencing chronic medical issues after their cancer experiences. I asked for donations to her hero fund for my twentieth birthday, and today, to celebrate 2019, I encourage you to do so again.

It’s cancer. Again.

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This is my brother, Jude. He’s ten years old. And in December 2010, he had a bone marrow transplant that saved his life.

Today, I found out that his cancer has returned.

I’m just completely and utterly shocked, and never in a million years would I have expected this. I still secretly don’t believe this is happening, and I really think this could be just a really bad dream or an elaborate April Fool’s joke everyone is in on except for me. But the waves of guilt and anxiety and fear and anger have been crashing down on me, and no matter who I tell or how many times I tell people, I just can’t get these feelings to go away.

“It’s not your fault,” I was told by every single person I talked to today. “It’s not your fault.” It’s not your fault. It’s not your fault. It’s not your fault. The words sear into my head with the intensity and pain of a hot branding iron.

With each repetition of this phrase, I don’t feel any better. It’s not your fault. It’s not your fault that Jude relapsed. It’s not your fault that your bone marrow didn’t work. And it’s not your fault that he’s going through this again. My mind becomes numb as I hear this phrase repeated over and over and over and over. It’s not your fault. It’s not your fault. It’s not your fault.

But no matter how many times people tell me it’s not my fault, that I shouldn’t feel guilty for my brother getting cancer a second time, the feelings of guilt don’t go away. I feel guilty for every time he came in my room and asked me if I wanted to do something. I feel guilty for every time he asked if I wanted to watch a movie with him. And I feel guilty for every time he asked me if I would watch him play video games. If I could go back in time, I would’ve stopped whatever I was doing to just be with him, before he was in pain, before it became too difficult for him to smile.

KERA, Dallas’ NPR affiliate, did a feature on my brother’s cancer story and recovery that ended just last week about how we’ve moved on from the cancer experience and what we’ve taken with us. When I was asked whether or not I worry about Jude’s health, I answered with a resounding “No.” I don’t worry because Jude’s health will be fine. Yet, I was proven wrong in the worst way possible. The “He’s been cured” line I told everyone back then is now a lie.

“I don’t know how I’ll get through this” has been my anthem today. And as I write this, I still have absolutely no idea how I’ll be able to cope. All I want is a sense of normality. “Normal” is the result I’m searching for but one I know is impossible to achieve. Because “normal” means my parents come home, my brother goes back to playing on the laptop at his desk, I go back to worrying about my physics class, and my brother doesn’t have cancer again.

When I was told that Jude’s leukemia returned, a few thoughts rushed into my mind. How will I ever get through this again? It was a fairly typical response, a textbook reaction of someone in my situation. But what surprises me is what my next immediate thoughts were. Will I have to email my teachers and ask for extensions on tests and homework? What does this mean for my extracurriculars? Am I still allowed to be as involved at my school as I currently am? Has everything I’ve been working towards for the last three years just been thrown out the window for something that’s “not my fault”? It feels incredibly selfish to wonder about what happens to me first, and maybe it’s not what everyone expects—or wants—me to worry about, but that’s all I can think of. And I just can’t even fathom how much longer my brother will be a cancer patient, what that will mean, and whether we’ll both make it out of this mess.

At this point, what I really want is to clear to me, and there are only a few things that I really want right now. I really want a strawberry-banana smoothie that’s thick, but still thin enough I can drink it through a straw. I really want to go to the library and check out a book on sociology that I’ve kept on hold for the past few days. I really want to reach a conclusion on whether or not I’m taking psychology next year and which class I’d have to give up to take it. And I really want to wake up.

Food and Fashion: Saint Valentine’s Day Luncheon and Fashion Show

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On Tuesday, February 12, 2013, I had the privilege of attending the Leukemia & Lymphoma Society’s annual Saint Valentine’s Day Luncheon and Fashion Show. How was it? Completely amazing.

As I mentioned earlier, I was selected for the Spirit of Tom Landry Character Award—a great honor that I’m so grateful to receive! The luncheon and fashion show were such amazing experiences, and I even got to bring along one of my first childhood friends, Alessia. (I thought she’d enjoy the fashion show much more than any other one of my friends, too.)

We got out of our car in the pouring rain, something I assumed was “good luck” for the events to come. Running into the Meyerson Symphony Center in the Dallas Arts District, I knew it would be an exciting day. I was surrounded by tables covered in the classic Valentine’s Day red and pink, with little gift bags—and pledge cards with my face on them!—on the tables. (The fun part about the picture was that I took it on my camera while I was in San Francisco!)

The Tables Continue reading

Cancer, Hope, and Miracles: One Moment Changed Everything

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This is my brother Jude, and it’s a miracle he’s here today.

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My brother, Jude, was a sickly child, constantly being taken out of school for medical reasons — what we believed was asthma. Jude going to kindergarten was such a huge moment — the two of us would be at the same school, he’d actually be going to school, and I’d be able to see him there every day.

Seventh grade was the first year I tried to stay extremely optimistic for the future. I started writing in a journal I bought, making sure to include even the mundane details of the first days of school. As I was rereading it, something caught my eye — Jude had a stomachache one morning, and we were almost late to school.

It was August 19, 2010, Jude’s fourth day of kindergarten and my fourth day of seventh grade. He cried for so long that day about losing a game in his gym class. He screamed about how they cheated him and how unfair the game was, as we told him that “it was just a game” and that it wasn’t worth crying over.

His cheeks were bright red, which I thought was my mom’s lipstick. Later that night, we found out he had a 105 degree fever, and we brought him to the emergency room. I’ll never forget the flashing lights of the ambulance that whisked my only brother away from the emergency room to the large hospital, Children’s Medical Center, in downtown Dallas.

The next morning, my friend A-’s dad brought me to the hospital to see Jude. I kept my sunglasses on for the ride home, trying to hide the tears.

When I made it home, I started packing up my things to take with me back to my friend’s house. My journal was exactly where I left it. I opened it, turned it to the next blank page, and wrote three words.

“Jude has leukemia.” Continue reading