Tag Archives: bone marrow transplant

Cancer, take three.

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It’s been a month since I found out that my brother’s cancer relapsed for the second time. This now marks nine years of cancer haunting our lives. That’s nearly half of my life and the majority of my brother’s life.

I’ve considered writing about it on here for a long time, but I just couldn’t put my thoughts into words. So I decided to simply push it away. But after what became a sudden, intense emotional breakdown at 2am last night, I decided that I had to somehow return to what has always been a form of therapeutic, cathartic release for me: writing about it publicly.

When I first started this blog at the age of thirteen, cancer was one of the first handful of topics I wanted to write about. At the time, it was a fairly simple, easily wrapped-up story: my brother was diagnosed with leukemia in his first week of kindergarten, it got worse over the coming months to the point where he needed a bone marrow transplant, and I was his donor. The procedure happened two days before Christmas, he eventually got better after many post-transplant roadblocks, and cancer advocacy became a piece of my family’s life.

Five years later, when my brother’s cancer came back, I wrote a blog post the day that I found out. It was short. It was raw. It was everything that an almost-seventeen-year-old me needed to scream out into the world. And then by this January, I was able to write about meeting my brother’s marrow donor in Berlin while I was traveling before my two terms studying abroad at Oxford. This time around, about four years later, I’ve replaced screaming on my blog with screaming in real life. The day I found out, I spent the entire day loudly weeping. The walls in my house are incredibly thin, so the sounds of me crying hysterically carried from floor to floor in the house. For the first time in a long time, I had been bracing myself for death. At the time, it seemed hopeless—I was told that my brother was probably going to die within the year, and there was likely nothing that could be done. I spent the entire night in grief. I didn’t want to be alive anymore. I didn’t want to literally die, but I did feel like I was already dead.

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The day after, my pastoral tutor told me that it sounded as if I had died many times over, that death seemed cyclical to me. For the last nine years of my life, I feel as though I’ve been brutally murdered and then resurrected, only to be killed yet again. None of this feels like it has come out of nowhere; for the week before, I was constantly on the verge of a nervous breakdown with absolutely no idea why. I had been having such horrific nightmares that I couldn’t sleep. I looked so exhausted and weary that other people began telling me that they were worried about me. I even considered going back on antidepressants after months of not needing them. And then I got the news, and it suddenly felt like it all made sense.

It’s been a month since I stopped believing in God. It’s been a whole month and I haven’t been able to find meaning in any of this. If you go back and read any of my previous posts, my outlook has always been, at its core, a spiritual one of hope, one that finds meaning in everything. Today marks yet another day I can’t find that. Even upon re-reading the previous posts about cancer that I made, I find it so difficult to reconcile the cruelty of chance—in particular, that my brother’s first relapse four years ago would come at the conclusion of a local radio special about my brother that ended with a segment on his life post-cancer—with any sort of grander meaning in the world.

It’s been a month since I’ve craved escape and have done everything I possibly can to do that. I disappeared for a few days to northern France, to Spain, to other parts of England. I considered hopping on a train and taking it as far away as it would take me. For a moment, I had considered not going back to London from France, and instead trying to get a train to Berlin, and that I would call my brother’s second marrow donor, tell her I desperately needed to be away and that I just needed a day to cry—but in Germany instead of in England. Then I decided against it.

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In the twenty-four hours after my brother’s relapse, all of us were forced to deal with incredibly difficult decisions. There were two options presented to us: we could look for a possible experimental trial or we could try to extend his life for about a year and try to give him a year doing and seeing all that he wanted. Hours after finding this out, some of my Oxford friends had come over with ice cream and snacks to comfort me, and I told them privately that I didn’t know whether I could ever continue on—I didn’t have the energy to exhaust every last option but watch my brother in pain in a hospital room, and I didn’t have the emotional capacity to consider a life where I suddenly no longer had my brother. The deliberations didn’t have to be resolved then; we found out a more conventional treatment option might be available, and on June 10 we will find out whether or not he’s a candidate for it.

Just a week ago, I woke up to a blog post my mom had written entitled, “If I knew what I know now.” It centers around the question that my brother asked my mom while he was getting his chemo: “Mom, would you have had me if you knew I was going to have cancer?” Her answer was a resigned and difficult no. There was a certain level of guilt that came with it—after all, how couldn’t there be? And that to me has been just another piece of what has been so hard about this entire experience: the guilt.

I want to live a normal life. I want to be happy. And I hate that I’m filled with so much guilt throughout this whole time—for having been away from my family for this whole experience, for wanting to escape, for actually being able to escape while the rest of my family can’t, for everything.

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Being the brother of a cancer patient has always come with its own unique set of challenges. Siblings are often forgotten in the experience, and it can leave long-lasting emotional scars. In my case, I think it wouldn’t be all that shocking for anyone to know that going through these experiences—first at twelve, then at seventeen, and now again at almost twenty-one—has certainly left indelible, traumatic marks on who I am. Years and years of therapy have tried to help me undo some of the most negative pieces of it: an abandonment complex, clinical depression, and anxiety. And now, just as some of those things were beginning to be worked through, it’s incredibly scary to have the wound reopened for yet another time.

I had thought that I could hold out and be strong, that maybe a few added years of life experiences and emotional maturity would make everything less painful than the previous times. But each distinctive cancer experience has taken from me in ways that I know I will never get back, and I can already feel the ways in which this journey has started to take from me.

I remember how, in my freshman year of Stanford, I had switched into a class called “The Cancer Problem” to fill a general education requirement. I had thought that a few years of distance and a certain level of stability within my family would make it easier to get through the class. But what actually happened was that I found myself emotional and hot-headed each time I got into the class, often choking back tears while arguing with my classmates, who were unaware of my family situation. Each class felt like navigating a battlefield, and half the battle was trying to not let on that I was suffering the whole time.

If anger characterized my processing for last time, grief seems to characterize my current experience this time. It’s been difficult to sleep or to fully enjoy my experiences, and quite frequently I found myself hit with random waves of hopelessness and the desire to just burst into tears. So instead, I’ve tried to keep myself as distracted as possible, running myself into the ground because then I’d be too exhausted to think much more about this. Someone once told me that Freud apparently had a list of different ways to handle grief—from avoidance to diving in head first, from deliberately changing your mental state through substances to intellectualizing the experience to give distance, from choosing to exist within an altered reality to pouring yourself into the world as it exists now. It seems that I’ve picked various forms of avoidance as a way to lessen the grief.

But that calculation seems to have been an incorrect one. Instead, it seems that, when I do feel the weight of it all, it feels like I’m being by a truck, compounding with all the other stresses of handling racism, homophobia, anxiety, academic stresses, interpersonal problems, and just general fears that come with being in your early twenties. And now the weight of cancer yet again finds its way back.

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I wish that I had a better way to end this post. I wish that I could end on a much cheerier note, that I would somehow be able to inspire the people who read this to go and do something or say something or change the way think about something. But I can’t. Instead, I return to what I wrote on April 9, 2015, the day my brother relapsed the first time:

“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.

Today, I feel the same way as I did four years ago. But somehow, I did get through it last time. And I got through it the time before that. I’ll get through it this time because I always do. The bigger question is just which piece of me I’ll lose in the process.

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.

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