242. A Seed of Hope - Adam Jaouad
The stress was too much. It was an important reminder not to shove things down, but to externalize those complicated feelings like fear and grief and powerlessness.
I learned that my sister had leukemia and that I was her only hope for a cure in the same conversation. At the time, I was in college, studying abroad in Argentina. I knew Suleika was sick, and that she’d left Paris for more testing back home in New York, but I didn’t know how serious it was. When they told me over a crackly Skype connection, I was in shock. Then they started sharing the statistics: that the chance of me being a match was 25%, and even if that was the case, there was only a 35% chance of survival. In my head, the odds started compounding. Numbers like that, they’re so harsh, so stark.
There was no question about what I’d do next: I immediately flew home, and I did all the tests. When we learned I was a 10/10 match—meaning the markers that the immune system uses to determine which cells do and don’t belong in the body all matched up—we literally jumped for joy. It felt good to help in a concrete way. One of the things about a cancer diagnosis is that there’s a whole community of family, loved ones, and friends who want to help, to be of service, to gain some control in an uncontrollable situation. They’re acting out of love, but they can’t always contribute in a way that’s actually helpful. Having a clear role and purpose in the process was comforting.
But it was also complicated. Along with purpose, I felt a sense of responsibility and started putting pressure on myself. I thought, It’s my bone marrow. If it doesn’t work, I’ll never forgive myself. These thoughts weren’t logical or reasonable, but nonetheless, that was where my mind went. And it was only when Suleika’s five-year bone marrow biopsy came back clean, and she was demonstrably and markedly improved and healthy, that the fear of failure diminished to the point that I finally began to think of it as a success.
And then, of course, that changed. I’m a middle school teacher, and I got the call about Suleika’s leukemia relapse just before the first evening of parent-teacher conferences. It had been a decade since that first transplant, and I was at a very different point in my life. When I was 21, some aspects of immaturity protected me. In some ways, I was more self-centered; I didn’t give too much of myself. The second time was harder. Suleika had worked so hard to recreate her life. She had rebuilt on ruins, something so strong. For this to happen not once, but twice—it was devastating for all of us. I should have taken some time off, but I compartmentalized it, and I got through three days of parent-teacher conferences.
By Friday afternoon, I was the sickest I’ve ever been. The stress was too much. It was an important reminder not to shove things down, but to externalize those complicated feelings like fear and grief and powerlessness.
That last one was more prevalent for me the second time, because in the initial discussions, the doctors said I wasn’t a valid donor. They thought if they used my bone marrow again, it would likely lead to the same outcome—relapse. But since our ethnicity is mixed and uncommon (our mother being Swiss, our father Tunisian), and since matches are much more likely between people who share a similar ethnic background, there wasn’t a match in the registry. It very quickly became evident that, once again, my bone marrow was the best hope.
There were moments this second time that the negative thoughts returned. It was almost like a part of me never let go of the idea it was going to fail. Yes, it got smaller over time, but then it all exploded up inside of me again. Thoughts like, This is my fault, or that my bone marrow wasn’t good enough. But Suleika completely reframed it. “You gave me time,” she said. “You gave me ten years.”
Both times I donated, I didn’t feel like I had a choice—which is to say, my natural reaction was to say yes. I’d say yes every time, whether for Suleika or for a stranger, because I’ve seen the impact. When you find a match, from that moment on, there’s a light. There’s a chance. Cancer treatment is a brutal process, like salting the earth and hoping something can grow from that ruined soil. And my bone marrow, and maybe yours, could be that seed of hope.
- Adam Jaouad
