First, allow me to introduce you to my son, for he is the reason this blog exists. Caemon was a wildly precocious, very sweet, creative, curious, funny little boy who was oh so wise. He was diagnosed with leukemia on August 20, 2012, and we later learned he had, in fact, a very rare form of the disease called juvenile myelomonocytic leukemia (JMML). Children under the age of five have literally one in a million chance of having JMML. Just over 1% of kids with any type of leukemia have JMML. It’s that rare. Caemon’s JMML resulted from a PTPN11 mutation, something unrelated to any other ailments. In fact, he was not born with this mutation. He simply had terrible luck.
Caemon underwent three rounds of intensive chemotherapy in a major children’s hospital in California’s Bay Area and eventually had a bone marrow transplant using the cells of a very generous unrelated–and anonymous–donor. Caemon’s resilience and bravery in the face of so many unknowns, so many scary situations, were nothing short of inspiring. He was well-known for befriending his fears, for leading with so much love. In his own way, he changed the world.
In a horrible turn of events, we learned in late January of 2013 that Caemon’s leukemia had relapsed, despite his transplant only one month prior. Just ten days later, leukemia took our precious Caemon. He was three years and five months old. He is missed by everyone who knew him, but especially his parents.
This blog developed out of a need to share Caemon’s story through his treatment, but it soon became a space of working through trauma–and later grief. The writers here are Timaree and Jodi, Caemon’s parents. Timaree has been the primary writer for years, but you will see Jodi’s beautiful contributions noted as well.
Thank you for reading this sacred journey through the love and loss of the brightest light of a boy you could ever imagine.
May you always lead with love.