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.
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.
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.
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.
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.
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.
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.
One thought on “A Marrow Match in Berlin”
Josh, thanks for sharing this! Children’s Health is sharing lots of other great stories like yours, Jude’s, and Yvonne’s for this year’s marrow drive. To make it even easier to get on the registry, anyone (age 18 to 44) can simply text ‘childrens’ to 61474
Thanks for all your help on behalf of the Be the Match registry – including the student marrow drive at Roosevelt just a few years ago!