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.

Three B’s


We have returned to the hospital. In fact, we needed to come back a day early because after Caemon’s blood draw on Halloween, the hospital called us to say his platelets were dipping too low for surgery, and they needed him to come in for a transfusion. We took him trick-or-treating (at exactly two houses in our neighborhood, and in the pouring rain), and then made our way back. Caemon charmed everyone in the hospital in his very official nurse’s uniform and was invited to work in various departments. He nearly followed a woman into the ER, ready to help.

The fact that Caemon was able to walk back in was lovely, but better than this was that he didn’t have to wear a mask! Along with learning that his platelets had dipped a bit, we also learned he was no longer neutropenic. Being able to walk through the hospital doors and into his own room a free, normal boy did a lot for him, for all of us, I think. It didn’t hurt matters that one of Caemon’s favorite nurses (we call her the Caemon Whisperer) left a treasure hunt for medical supplies all around our new room. He was delighted.

It was hard to leave home, and especially hard to want to be in this environment again, away from all of our comforts, and it was rough coming back a night early, leaving things in more disarray than we had planned, but it was what had to happen to keep our boy safe. As we drove over the Golden Gate, Jodi and I shifted into hospital mode, ready to take the next steps toward reclaiming our son.


Yesterday was a big day, as Caemon had surgery to place a central line (Broviac, for those interested) and to receive another bone marrow biopsy and lumbar puncture (spinal tap) with an injection of chemo to his spinal fluid. We waited and waited for surgery hour to draw near, and as is typical hospital fashion, his surgery time came and went without any word of when he would be transported. Meanwhile, we had to spin a number of lies to help Caemon cope with not being able to eat or drink for hours on end, the most effective of which was that the hospital was out of food and water. It’s amazing how well this works for him, and he just busies himself with something else until he thinks to ask again. He is so good-natured about this, and it’s honestly a little amusing to hear a tone of incredulity coming from a three-year-old. How does a hospital just run out of food anyway?!

The time finally came for the surgery, only an hour and a half after it was originally scheduled, and we headed down. We met all the usual players, the anethesiologist, the attending oncologist, the nurses from the OR and pre-op, and we got him ready. He was so brave once we were there, busy asking questions about the “warm room” (the operating room) and what sort of medical supplies people might have available to give to him. I donned the bunny suit (one day, I’m sure Jodi will snap a photo) and accompanied him in until he was asleep. Then, Jodi and I left to use our nervous energy to finish moving back into the room.

Caemon recovered well from his surgery, and after some ice cream, chocolate, pizza, and pain medication, he was feeling pretty good, and really, who wouldn’t with a diet like that? Jodi and I were trying to prepare ourselves all day for what might come, as we knew the preliminary biopsy results would be back later in the day. We knew that his platelets were lower, and we knew his oncologist was expecting to see that he needed more chemo, that his disease was still pretty active. When she finally came by in the evening, she said she was a little surprised and a little confused by his results because they showed some unexpected improvements, improvements to his platelet quality, his red blood cell quality, and overall less disease. It was hard to read her because I think this brilliant woman was genuinely surprised, but we took these tidbits of good-ish news. She wanted to get the official results today before making any official plans about his next round of chemo (she thought we might need to try something stronger), so we waited again hoping the official results didn’t show something the preliminary results missed.


All day today, we have waited to hear the flow cytometry results on the bone marrow biopsy. These are the official results that could help determine the next round of treatment. Finally, just an hour or so ago, the doctor came by to tell us what she had learned from the official reading of the bone marrow. Her exact words were, “His bone marrow actually looks really good! I’m really happy with it.” You may recall that the last time we spoke with our oncologist on a bone marrow biopsy day, she had us in a conference room and had tears in her eyes. This time, she pulled us out into the hallway (because Caemon was sleeping), and with a smile on her face, she read us the email report showing that Caemon’s bone marrow is showing only 3% of the blasts that were in such abundance (over 20%) in the last biopsy. She is confident that his bone marrow is recovering well and that the disease is responding just as it should to the chemotherapy regimen they have used.  Jodi and I aren’t accustomed to hearing good news, but this was definitely news of the good variety and certainly something that gives us a good dose of hope.

Today Caemon starts his next round of chemotherapy. We have taken advantage of his freedom today, taking him to the playroom, dancing around the room with him, letting him walk the halls a bit. None of us is looking forward to the rough days that chemo brings, the fevers and rashes and other side effects, but knowing that it is working and that this next round may get him healthy enough for transplant is a huge relief.

Transplant is, after all, our next step. We have not spoken with any of our bone marrow doctors in a couple of weeks, but we learned from our oncologist that Caemon is scheduled to be admitted for transplant in early December. While they don’t have one specific donor pinned down, apparently they are examining several donors, who are already excellent matches to determine which is perfect. This level of precision is certainly welcome, and the knowledge that we have ample donors from which to choose is so heartening, given the number of blows we have had since his diagnosis just a couple of months ago.

We are on our path, as hard a road as it may be, and we are learning that our boy has a lot of fight in him. He is so strong, so brave, so precious.

Our boy gazing at the fire he helped me build the morning before we came back.