Shortly before Caemon was diagnosed with leukemia, I was reading the book The Immortal Life of Henrietta Lacks, the true story of a young African-American woman who had died of a very aggressive form of cancer. Lacks’ cells were taken without her family’s permission, and they were grown and regrown for decades, sold to labs all over the country and became integral in making countless medical breakthroughs. Hers is a fascinating and tragic story, something with which I could only identify on an academic level as I read it.
The night we learned that Caemon had leukemia, we were asked to sign the first set of what felt like hundreds of sets of papers entering Caemon into this study or that, allowing permission for his blood and cells to be studied by countless researchers, and I found myself commenting that night, even through my shivering and shock, that we’ve come a long way since Henrietta Lacks. The doctor who was with us smiled sadly and agreed, and Jodi and I expressed our appreciation that something good might be able to come out of Caemon’s diagnosis. We wanted to help, and if they were taking his blood anyway, we may as well allow for them to use it to learn.
I don’t think I imagined in that moment, even as I alluded to Lacks’ own life and enduring cells that my son might gain his own immortality through the many blood samples that would be taken through the course of his treatment, but sure enough, he has, at least to some degree.
Caemon had copious vials of blood drawn during his five and a half months of treatment, and while most of those went to the lab to test for blood counts, viruses, chemo levels and more, some of them went to his oncologist’s laboratory to aid in her team’s research on JMML. On a fairly regular basis, a doctor from her lab, Dr. Stieglitz, would come to speak with us about Caemon’s status and would share information they had learned about his disease through their work. There was a certain reassurance in talking with him. He adored Caemon, and Caemon adored him right back, and by talking about the basic science of Cameon’s disease and the changes it went through, we could begin to understand the mystery that JMML was–and is. We could already see that this doctor, who saw Caemon not just as a research subject but as an amazing little boy, an inspiration even, was going to help fulfill that wish that some good come from Caemon’s disease.
It wasn’t until Caemon died, and we were learning the results of his autopsy that we visited Dr. Loh’s lab where our son’s cells now lived. It was a challenging day, but already, her team was learning from how Caemon’s disease had progressed in his body, and I knew they would continue to learn about him. Dr. Stieglitz shared that he often worked with Caemon’s cells in the lab, that he always thought of him, pictured him, used his life as inspiration to keep searching. To hear this on such a difficult day felt so promising.
This past summer, over a year after that visit to the Loh Laboratory, we had contact with Doctors Loh and Stieglitz, who both shared with us that they were actively using Caemon’s cells in some fairly groundbreaking research, research that might allow them to understand why some kids with JMML do so poorly, why they relapse, why their disease progresses so quickly. They were learning from our son, who had proven to be an outlier with this disease in so many horrible ways, about how they might help other kids with the same mutations survive the disease. And to continue that research, they told us, because they didn’t have a limitless supply of Caemon’s samples, some of these blood samples, the last living parts of him, were being sent to a lab back east to be reproduced.
Our son is, indeed, in some very real ways, living on.
When we think about Caemon’s legacy, we often focus on what we do to raise money or to share his passions with other children, and these are no small matters. Every aspect of Caemon’s legacy work is sacred to us, but the signing of those papers during his treatment, the sharing of his cells may be the most life-changing thing we ever do. Our son’s own blood may save countless other parents from the agony of shattered hearts; they may indeed help other children grow up. Caemon’s legacy takes so many forms–of love, of wisdom, of living in the moment, of embracing one’s fears–but those cells of my precious boy are a legacy of life.