in case you’re curious

Yesterday, Jodi and I took a trip to San Francisco and our first trip back to the hospital where Caemon was treated. While the visit had originally been focused on meeting with a couple of nurse friends for lunch, we learned before we left that Caemon’s autopsy results were ready, and his oncologist had offered to meet with us. Although the thought of returning to the hospital was unimaginable, we wanted the information, wanted the opportunity to sit with his doctors, so we agreed. Having a “sit-down” again flooded us both with such anxiety–after all, we have had plenty of these, none of which resulted in welcome news–but I reminded myself over and over yesterday morning that we had already experienced our worst fears. Nothing we learned was going to make losing our boy any worse.

When we arrived at the hospital, Caemon’s primary oncologist met us in the lobby, as did one of the oncology fellows who has been with us from the beginning of Caemon’s diagnosis. They led us to the university side of the hospital and up to the doctor’s lab and then her office. It was good to be on this side of things, to see where this groundbreaking research is done, and more importantly, to be separate from where Caemon took his last breaths. Joining us was our beloved social worker also from the hospital. We were grateful to be surrounded by these compassionate people as the details unfolded. It seemed right for them to be there as they had been all along.

We have suspected since Caemon died that he likely had some leukemia in his lungs. His last days saw him needing more and more oxygen. He had developed a cough, and while some of this was attributed to the virus CMV, which was being treated, some of it seemed unexplained. There was some concern that he had another infection too. We learned yesterday that Caemon’s lungs were, in fact, filled with leukemia. Leukemia lined all the pockets in his lungs which would normally contain air, providing less and less room for air to enter as he became sicker and sicker. There were also small nodules forming in Caemon’s lungs–the beginnings of tumors–as well as some CMV and some blood. His lungs were four times heavier than normal lungs. They were heavy with disease. He had clearly been doing some bleeding for a few days, most likely due to the burden of his disease. There had been some concern that Caemon’s intubation (the placement of a breathing tube) had been the cause of bleeding, that this bleeding had resulted in his demise, but ultimately, Caemon’s lungs were so overcome with disease that even had a breathing tube worked, he would not have survived more than a few more hours. He was simply done.

The autopsy performed was limited to the lungs and spleen. Caemon’s spleen had been problematic from the beginning. It was what first alerted a pediatrician to send for blood tests; it was the thing every doctor who entered his room wanted to examine. An enlarged spleen is characteristic of JMML, and in Caemon’s case, the spleen was sizable. It trapped his platelets making it difficult for him to maintain safe levels, and it also carried a great deal of disease. We learned yesterday that while a normal spleen is pink or reddish, Caemon’s was white–white with leukemia. I imagine had more of his body been examined, we would have seen leukemia everywhere.

These details might seem unsettling, but honestly, I needed to know. I needed to know that it was his leukemia that took him, that it wasn’t some sort of bleeding or trauma that could have been prevented. However, confirming that Caemon’s death was the result of his incredibly aggressive disease provided a good sense of closure. I hate that he had JMML. I hate that  the type of JMML he had was so quick to take my boy, but I am heartened to know that we did absolutely everything we could.

Sitting there with Caemon’s providers and later talking with more of them about these findings, learning the details of why he succumbed to JMML, was as hard as anything, but I am learning since his death that I have my son’s insatiable curiosity. Caemon used his curiosity to overcome his fears, perhaps not intentionally, but quite successfully. I find myself these days reading the articles on JMML that I wouldn’t touch during our son’s treatment. I want to understand this disease, Caemon’s particular mutation (PTPN11, if you’re interested), how it worked in his body, why it took him. Finding an intellectual framework helped me settle into his treatment, and it is a place that provides me with some comfort now. I can’t change what happened to Caemon–oh, how I wish I could–I can learn, though, and through that learning maybe find some solace there.