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.

18 thoughts on “in case you’re curious

  1. Bless you two! You are such good moms. I am glad to read that you know you did everything you could, I pray that brings you some peace. You are in our thoughts and prayers.

  2. You are one strong mom. I imagine that having some answers are better than not having any at all. I am glad that you got the answers.

  3. What strength, to sit through that and hear, though I totally understand the peace and closure that *knowing* can bring, even if it’s an uneasy peace. ♥

  4. Thank you for continuing to share with us. We continue to love and care for you both and your sharing with us helps us to feel that we are somehow helping you with that awesome burden you carry.

  5. You are amazing; you both are. Thank you for sharing so much with so many – we love you BOTH and continue to hold you close. xo

  6. Oh, moms. My heart is with you.

    Given that I work for The Leukemia & Lymphoma Society, I made a concerted effort to NOT learn anything clinical about JMML while Caemon was in treatment. There are times when research is helpful and others where it could be downright hurtful.

    I’m glad that you are both such boundaried people that you were able to decide that there was a time for carrying huge hope, a time for being his doulas as he transitioned, a time for grief, and now a time for learning.

    You did everything RIGHT by Caemon, even though there is no right when it comes to horrific childhood cancer. You explained things to him in a way that he could understand. You created a medical care team that included you and your family, the medical professionals, and most importantly Caemon. He was empowered to participate in his own healing. You did that. HE did that. You got it right.

    As it became apparent that he could get very sick or even die, I was so impressed by your decision to create a safe space for him. Just as you would for a birth or another life transition, you gave him a quiet place to heal and kept all medical chatter outside of his door. You filled his room with trees and welcomed your supporters to fill our screens with kitchen appliances and candles and sunrises and tattoos.

    You did it right. You loved him so fiercely that he never knew a breath without love and support. You are, quite possibly, the best moms I’ve (n)ever met. I will cheer for you as you grieve and grow throughout your whole lives.


  7. Thank you for sharing such an intimate moment. Blessings to the both of you, and all that pertains to you….I hope that I am not out of line here, but Caemon came into his life with a plan, and he left when he was ready to cross back over. From all that you have written, it seems that you did all that you could, and more…it sounds like everyone in his care team did too, … Caemon left many of us, with much to consider both about life and death, and most of all love. Caemon picked the 2 of you to parent him while he was on his lil’ short time on earth task, of teaching us all. You must be a very special couple. My hope is that you turn Caemon’s blog into a book, so that others can learn…You wrote so beautifully every step of Caemon’s journey, a couple’s journey with a son sick with Leukemia. In all of the ugliness of the Leukemia, you, in your blog, allowed the beauty of who Caemon is to shine. What a wonderful gift you have or maybe have been given, I don’t know….

    Goodbye, and my best to the both of you…and thank you for sharing and allowing me to experience the fears, sorrows, sufferings, momentary miracles and great joys, of a situation that I as of this time in my life have not experienced…and, if I or a friend, or neighbor should go through a similar journey, it may help me see more clearly along the path, already taken by another, who dared to share.

    • Knowing Caemon thru your beautiful words was a special gift given to others. Thank you for sharing his love!

  8. While difficult, I can see how having details and knowledge about JMML and how it affected Caemon can provide comfort and closure. You and Jodi are amazingly strong. I often think about you two, and your precious boy. You did everything you could and honestly, I don’t know how you stood as strong as you did during your precious boys illness and now in the tragedy of loosing him. My own son was recently hospitalized….there was talk of meningitis and Picc lines, and months of IV meds. I was about to fall apart, but thought of what you all went through and drew stength from that. I remember a mural on the ceiling in my sons ER room, of butterflies and flowers and I searched for a bee…. I needed there to be a bee, and finally I saw one, a small little bee, just one, on a flower. I knew it was going to be ok then. Caemon is alive in so many hearts and continuing to do his work. I hope you can find solace as well, in the knowledge that your boy was and continues to be an amazing little soul.

  9. This is so hard to read, so hard to hear what what it did to his body. Like you, knowledge is power for me too and I understand your relief at having more details; your quest for more knowledge will empower you.

    I’m so angry that Caemon was stolen from you. I’m so angry that this happened to your boy. Sad and angry.

    I’d like to echo what Bree said so well – you are loving, fierce remarkable parents to an equally fierce and remarkable son. No battle has ever been fought as bravely and strategically as yours. I continue to be in awe of your clarity and grace, touched by your spirit and love.

    Thank for allowing us to share some of this journey with you.

  10. I’m glad you felt some closure from hearing the autopsy results. I can’t imagine how hard it must have been to sit in that office. But I do remember you writing about geeking out over some details of the disease during one of your first conversations with one of Caemon’s doctors and how it provided some framework and protection from the raw emotion. That makes so much sense. I’m comforted by these kind of details as well – I have an instinct to stare into the fire.

    I’m full of love for you two and I think about Caemon every day.

  11. Empathy grows to curiosity grows to investigation grows to knowledge grows to understanding grows to acceptance, and perhaps, back to empathy. The Bee Dance, circles and wiggles and passing of information, all for the greater good. Love you Ladies, Roger

  12. I am so glad to read that Caemon’s medical team continues to be a support to you….I can’t imagine any child being better cared for than Caemon was by all of you.

  13. I am so sorry for your unspeakable loss; I lost my husband of 20 years to a very aggressive form of lung cancer one year ago this month. He was an amazing father to our 2 girls, and my best friend. I, too, had to know that everything was done for him that could have been done, including his participating in a test study. I have struggled over the last year to accept his passing. I admire the way you are sharing, and facing your grief head-on. Please allow yourselves all the time you need to grieve. Be patient with yourselves, and ignore any suggestions down the road by less sensitive people that “you should be over this by now.” Caemon will always be part of you, and his love will always live in your hearts, until you see him again. Love to you both, Debra

  14. Iʻm glad you wrote about this. The JMML was too much of a load to bear on every level, and it was at a certain point time for Caemon to let go. And you knew it was time when it happened.

    Iʻm sure there are many bereaved parents who are left with “I should have” moments in the path, through no fault of their own. As much pain as you have been through, at least you will always know that you made good decisions on his care, all along the way. You gave Caemon the best treatment and the best of yourselves, and no more could be asked than that.

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