Fraternal twin of leukemia survivor: Advice for navigating a sibling’s cancer diagnosis

When my twin brother, James, was diagnosed with acute myeloid leukemia in June 2013, everyone was shocked. We were only 19 at the time. Cancer does not run in our family. And before that, he’d been completely healthy.

My brother and I do everything together. We have the same friends, enjoy the same hobbies and hang out all the time. We aren’t just siblings; we’re best friends.

But the leukemia was already so advanced by the time James was diagnosed that he had to start chemotherapy almost immediately. I was terrified. This would be the first experience we couldn’t really share.

Fortunately, my brother went to MD Anderson for his leukemia treatment. And stem cell transplant specialist Dr. Elizabeth Shpall has kept him in remission for 10 years now. I didn’t know that would be the case at the time, though. Here are four other things I only learned in hindsight.

Don’t let survivor’s guilt hold you back 

One of the most heartbreaking aspects of my brother’s experience was getting to know other leukemia patients who didn’t do as well as he did on treatment. James tended to see the same faces over and over again at MD Anderson because they were all on roughly the same treatment schedule. So, when some of them suddenly stopped showing up, we could all guess why. It was really sad.

James met about five other patients at MD Anderson that he really connected with. We attended the funeral of one of them, but didn’t know what to say. There’s this weird feeling of guilt that comes over you sometimes when your loved one is still alive, but someone else’s isn’t.

The mother of that patient told us not to feel guilty. She said that even if her daughter couldn’t be the one who lived, she was truly happy for us, and she knew her daughter would be, too.

Survivor’s guilt is real. But making connections with others is still the best part of life. You never know when you’re going to lose someone or your own time here might be up, so don’t hold back. 

Lean on your friends

For me, the hardest part of my brother’s diagnosis was being away from him and my parents for extended periods. The four months he spent in treatment at MD Anderson marked the first — and longest — amount of time we’d ever really been apart. We were both attending college in New Orleans back then. But nobody offered online classes yet, so I had to remain there to keep up with my studies.

Our dad stayed with James at the hospital during the week. Our mom took the bus from New Orleans to Houston every weekend. I knew they needed to focus all their attention on him. But it was really hard being away from both them and my twin. Especially when I could only really “be there” for him by phone.

Fortunately, I have a lot of other friends. So, I was able to talk with them about my feelings, fears and frustrations. I only really felt better once James came home. But I leaned on my other friends and stayed busy studying until then.

Focus on the positive

From the moment I found out that my brother needed a stem cell transplant, I wanted to be the one who gave it to him.

But despite our being twins, it turned out that I was only a haplo-identical match with James, while our older sister, Cecilia, was a perfect match. That means she shared all of the blood markers doctors look for when testing for a good genetic match, while I only shared half. 

That was a little disappointing at first. But James has come so far since then. I’m super happy and grateful we were able to find him a good match. Now, I just have to endure Cecilia’s good-natured teasing, claiming that she is James’ “real” twin, while I’m the “fake” one.

Be kind to everyone: their challenges might not be obvious 

James didn’t really broadcast the fact that he had cancer. But his treatment was extremely difficult. He developed side effects due to chronic GVHD, some of which were pretty severe. He’s still dealing with a few of them today.

But he has persevered. James rang the bell to mark the end of his treatments at MD Anderson in October 2013. Then, he took summer classes and extra courses so he could still graduate on time. Later, he got a master’s degree and graduated from medical school. He completed his residency late last year, and is now doing a rheumatology fellowship. That seemed a really fitting way to mark his 10-year cancerversary.

I’m so proud of my brother for not letting cancer hold him back. But his reluctance to tell anyone about his cancer diagnosis made me realize the truth of a meme I once saw: “Always be kind. Because everyone is fighting some battle that you’re completely unaware of.”

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