Thirty Days of Caemon–Day 8: That Face

Caemon, 11 months old

Caemon was a beautiful child from the moment he was born, and as he grew, Jodi and I would playfully remark each day, “I think he just got cuter!” It was true. As this boy grew, by the day, sometimes by the moment, he grew more and more beautiful. People would stop us in stores to tell us what a gorgeous child we had. His ocean-blue eyes could capture anyone; his smile radiated light; his hair, like wisps or cornsilk made him seem to glow. I could go on and on about how beautiful my son was, but I don’t need to because if you’ve been to this blog, you’ve seen photos. You know Caemon was a beautiful little person to behold.

During Caemon’s illness, and especially after he died, that face of Caemon’s has become widely known, not only amongst his supporters, but for those donating blood, those signing up for the bone marrow registry, people attending childhood cancer rallies, oncologists and drug manufacturers attending conferences. Yes, even them.

On the morning Caemon died, his oncologist was presenting to a major drug company, trying to convince them to approve a new type of drug for use with children with JMML. As his heart beat for the last few times, she was showing his photograph to these people, using the best pathos she could–our son’s shining visage–to bring them over to her cause. A few months after his passing, another of his oncologists–a man who has done extensive research on JMML using Caemon’s cells–told us that any time he presents a paper on JMML, he includes a photo of Caemon in his presentation. His face is powerful. He shows these worlds of test tubes and DNA sequences and even dollar signs the very real face of this disease.

I remember the first time I saw Caemon’s face on a poster for the Leukemia and Lymphoma Society, I wept. The year he died, he was to have been our area’s “Honored Hero” for the the Light the Night Walk. Instead, he became the “Remembered Hero” with his photo and name printed on posters that would appear at our speaking engagements, fundraising events, and finally, for the walk itself.

Caemon is also one of the faces of Be the Match, at least here in Northern California. At a blood drive last February, we came to assist with bone marrow sign-ups, and Caemon’s photo appeared on a new recruitment sign for the bone marrow registry. His photo has been used at blood drives and marrow drives all over northern California, and, as we mentioned early on in this series, even at a blood drive in Dubai.

But ultimately, Caemon has become one of the many beautiful faces of childhood cancer. He is a St. Baldrick’s Honored Kid, which means that every few months, someone uses Caemon’s face as inspiration during a head-shaving event to raise funds for pediatric cancer research. On two separate occasions, Caemon has been part of childhood cancer awareness days. In a rally in a small town on the east coast, during which a mayor proclaimed the day Childhood Cancer Awareness day as healthy children held photos of children who had died of cancer. Caemon’s was one of those kids. Just a few days ago, as part of a demonstration in front of the National Institute of Health headquarters in Bethesda, Maryland, Caemon’s was one of the faces gracing a tag on a rose (pictured right) handed out to bystanders, as demonstrators worked to raise awareness for the dismal funding childhood cancer research receives.

This face that we miss so much, the smile that still manages to make me swoon and ache all at once, is doing so much good. Admittedly, it can be hard at times knowing that our son is now a poster child, a cautionary tale, a sad statistic because as his parents, we just want him. But knowing that his beautiful face is seen by so many and that he continues to make even a small difference in the world is enough for us to keep putting him out there as the face of childhood cancer, the face of JMML, the face of blood donation and bone marrow registration, the face of compassion and doing for others, the face of pure love.

Courtesy of In Her Image Photography.