code white

Jodi and I are preparing to leave on a trip, something to get us away from our lives and home, to give us some quiet and healing space. We plan to do some writing, to spend time outdoors, and to giving our morning some positive outlets. Before this can happen, though, there is something that has to be written here: the story of Caemon’s death.

Readers, please know you don’t have to read this. It isn’t incredibly graphic, but it is the very detailed story of what happened in Caemon’s last twenty-four hours for those who want or need to know. It won’t be easy for anyone to read.

Many people have wondered what happened, how Caemon went from what seemed to be progress to what then seemed to be his rather sudden death. What I can say with a fair degree of certainty now is that his death was not sudden. It felt that way because of the hope we maintained for him, but our sweet boy was starting the process of dying when his disease relapsed.

When I wrote the post “Baby Steps,” I was looking for every shred of hope I could find, every bright spot that might indicate Caemon was making progress. I was not alone in this. When the doctors would come in for daily rounds, they would share the news of the day, and we would all celebrate the small victories: Caemon’s swelling had gone down some, the new drug was holding the blasts at a steady level, he hadn’t had a fever, he was hungry for a few bites of food. Of course, looking back with the clarity of hindsight, these hardly seem like victories. In fact, I can see, as Caemon’s doctor so gently pointed out to us on the phone today, that so much of what we were seeing, so much of what I was writing about in that post was about Caemon beginning to die.

The day after that post was written, February 4th, we were relocated for awhile in a separate room for a maintenance issue. The night of the 3rd had been a rough one. Not only were we in a strange room, but Caemon was very uncomfortable. He had needed oxygen throughout the night, but he was also hard to soothe. This was in part because we had changed his pain medication. After having rashes in response to morphine, we moved him to dilaudid, but this seemed to be disturbing his sleep, so we had changed him one last time to fentanyl. That night, we had such a difficult time staying on top of his pain. He cried out frequently and was simply not feeling well. None of us slept much as we tried to keep him comfortable. Unfortunately, the next morning, he was due for a CT scan and would have to go under general anesthesia, so he was prevented from drinking after a certain time. The poor boy had a very sore throat, so the absence of his tea and water was distressing to him. He just could not get comfortable, but we distracted him, loved him, played his music, and eventually took him early in the morning for his CT scan and back to his room where he could drink as much as he wanted (and oh did he love his tea when we returned!).

Early in the morning, we had found some good levels of pain management for Caemon, and while he was sleepy, he was also conscious throughout parts of the day, and he always wanted one of us lying in his bed with him. We were happy to oblige, feeling the need to be as close to him as possible and also hyper-aware of just how exhausted we all were. Lying still was about all any of us could do. We talked with the nursing staff about making sure we had a more restful night, especially given that Caemon was scheduled for his first dose of radiation for his spleen the next morning. By evening, we were able to move back into our room perched over the city, and we began to settle in again, putting some of our trees back on the walls and trying to make Caemon comfortable.

It’s no mistake that we were surrounded by the most special nurses during these challenging days and nights, and it was no surprise that night when one of our favorite night nurses was with us. When his shift began, we came up with a plan to manage Caemon’s pain and to make an effort to get some rest. We all certainly tried. The pain was as under control as it could be, but soon Caemon started having some difficulty with his breathing. For several days, he had struggled a bit with his breathing and had done some grunting and breath-holding, all of which we thought was an effort to keep from coughing because the coughing hurt his throat. This difficulty was new though. He wasn’t holding his breath; he was just having a hard time. He was connected to an oxygen saturation monitor, and typically, we wanted to see numbers in the upper 90s to 100. His levels that night started to dip into the 80s and for longer and longer periods.

As this was happening, Jodi and I were increasingly aware that Caemon might end up in the PICU (pediatric intensive care unit). While we were certainly prepared for him to go there if he needed it, he also didn’t want to jump on extreme interventions if he was still functioning well in his room with the care of his providers. Before long, the resident physician on call did bring in some representatives from the PICU (the Rapid Response Team), who assessed Caemon and determined that he was fine to stay on our floor but would need extra monitoring and may need a trip to the PICU for some assistance with his breathing. A chest x-ray was performed, he had more monitoring, the extra team lingered and jumped into the room any time his numbers dipped or climbed, and his nurse came up with as many ideas as he could to help support him–everything from a blood transfusion to get his oxygen moving throughout his body to an anti-anxiety medication to calm his breathing to a dose of Tylenol for a creeping fever. Caemon even agreed to wear an oxygen mask, something he had never willingly done before. All of these efforts were mildly helpful, but none of them was going to stop this train we were riding.

As the medical treatments were administered, Jodi and I offered up everything we had in our mothers’ tool boxes. We read Caemon his favorite books. We sang him songs and told him stories from memory. We wrapped our arms around him and kissed him. We talked to him and rubbed his feet with lotion. We told him over and over how much we loved him and how much we believed in him. And through his mask, he told each of us separately that he loved us. He hugged our heads.

Soon, Caemon’s oxygen levels were dipping lower more frequently, and his pulse rate was higher and higher. He had been given some hydrocortisone (a steroid) to prevent him from having reactions to the blood, and at one point, we thought he was reacting to this. He start reaching his arms out over and over again. He was lying down, but he would ask to lie down. He would ask me to pick him up, and I would, and he would ask me again to pick him up. This disoriented state continued for some time and his oxygen levels dipped lower. Everyone knew it was time for him to go to the PICU. We didn’t want to go because we both had a feeling he wouldn’t make it back, but we knew it was time. The team readied a gurney for him and got his monitors set up. We gathered our things and backed out of the way while Caemon’s nurse picked him up to move him. When he laid him down, admidst the shuffle of trying to move his IV pole, the PICU nurse exclaimed, “He’s not breathing!” Everything became a blur of bodies and movement, and in seconds someone shouted, “We need to call a Code White!” If you’ve ever watched television shows about hospitals, you know that a Code Blue is indicative of a person experiencing a life-threatening emergency. A Code White is such an emergency for a child.

In moments, a crash cart was in the room along with upwards of thirty or forty people. Jodi and I first stood in the corner as we watched them begin to help Caemon breathe, as we watched his vitals on the monitor. We were both awash in panic when a nurse spotted us and asked whether we wanted to leave or not. We told her no, so she and another nurse sat us down while she began to explain what was happening. At this point, we could not leave. We had seen him go through everything. We had heard every medication that was administered. This nurse provided us the support we needed to stay informed about his care. I can tell you that he had multiple doses of epinephrine and dopamine. I watched his nurse pushing a large syringe of albumin into his tubes. I watched as he was intubated and as the attending physician from the PICU pumped air into his lungs.

Soon they had planned to transport him to the PICU, so we were ushered out of the room. This was around the time of the morning shift change, and I remember standing in the hallway waiting for his gurney to travel down the hall. In a matter of moments, our nurse friend who was to have been his nurse that day ran up to us with tears in her eyes ready to hold us. She and another nurse friend escorted us down the stairs so that we could meet Caemon at the PICU. Once we made it there, we were taken to a waiting room, and Caemon was wheeled into the PICU.

We were visited there by our nurse friends, then some doctors from the PICU who were hoping to get Caemon stable. Then the radiation oncologist showed up, and she was ready to bring Caemon in for his radiation as soon as he was stable. Everyone who came in had something slightly different to say, but the hope was still there that he would stabilize, that he would make it.

And then came the attending physician for the PICU. She sat with us and began to explain that she didn’t know whether they would be able to save Caemon and if they did, she didn’t know what shape his brain would be in, whether he would have any kidney function. I remember shaking as I took this in, and then she told us that children who were as sick as Caemon was don’t typically survive what he had been through. He had bleeding in his lungs. He didn’t have any platelets to speak of to stop the bleeding. He wasn’t doing well. I made her promise that she wouldn’t come in to announce his death, that whatever happened, we needed to be there.

A few minutes later, a nurse came to get us to see him. I think we tried to sit and watch (people kept giving us chairs), but the chaos around him was too much. By then our social worker was asking us to come with her. There was a quiet room where we could be. And then what seemed like seconds later, the doctor came back to tell us we needed to come in now. On our way, she told us she didn’t think they could save him, that the next step would be chest compressions but that this would be incredibly traumatic to his already traumatized body. We knew it was time.

When we entered the room, the doctor asked, “Is that his real blood pressure?” It was something like 21/15. “Yes,” was the reply. The doctor told us that if they stopped breathing for him, his heart would stop, that he would die, but that he was essentially already gone. Jodi and I could see this. Our boy wasn’t in that body. All that was keeping him alive at this point were the huge amounts of drugs making his heart pump artificially and the nurse who was manually pumping air into his lungs.

We looked at each other, confirmed that we agreed he was done, and we asked them to stop. They cleared the room of extraneous people, and we took our positions at the side of our son’s bed. They stopped the air pumping. They turned off the monitors. Soon, all around Caemon’s bed were his caretakers: his bone marrow doctor, an oncology fellow who had been with us from the beginning, his beloved child life specialist, our dear social worker, and two of the best, most lovely nurses at UCSF. We all stood by his side while Jodi and I told him our goodbyes. We did this for a few minutes watching as he no longer breathed, no longer moved. The oncologist took one of Caemon’s own stethoscopes from his IV pole, the red one I got him as a special BMT gift, and she listened for his heartbeat. After a few moments, she shook her head and burst into tears. We all did. Our beloved Caemon had died.

In the minutes following his death, we held Caemon, had some last moments as a family, and said our goodbyes. We went back to the special waiting room where we received Caemon’s caretakers for several hours, and some of his caretakers stayed by his side while people came to say goodbye to him. I have written about the care that followed his death. It was beautiful and honored him so well, and when I made one last visit to see my little boy’s body one last time, I was honored to see him so loved.

In the days and weeks following his death, we have come to understand a lot. Perhaps the hardest to accept is that he had been dying for a week and a half. His disease, we learned, was just too aggressive. His oncologist shared with us today that at the time they learned about his relapse, the level of his mutation in his body was back up to the level it was when he was diagnosed. It was as though he had never received a transplant at all. The disease was likely in his lungs and most certainly in his spleen and his liver. He had very active CMV and possibly other infections, and because they had done such a good job of helping him with each of his symptoms, it kind of didn’t seem like he was dying–not if you were looking for the miracles. The cold reality was, however, that his poor little body was so consumed with this incredibly vicious form of JMML that he was never going to make it. Those last cards the doctors were playing may as well have been thrown into a fire.

But we had to try, didn’t we? We had to believe that our boy could do this, that he could be a miracle or a breakthrough, and with that belief, we made the quality of his last days the best we could. We laughed; we read books; we snuggled; we spent time as a family; he even drank his favorite tea and ate nachos and a British Kit Kat.

I also know now that Caemon didn’t die in the PICU. He died as he left the arms of one of his favorite nurses to be placed on that gurney. That flailing he had done in my arms some time earlier was a boy trying to make sense of why he wasn’t staying in his body. There was a moment once the code had been called when I reached over to touch my son’s foot, and I remember it being the strangest sensation. He wasn’t there. I take comfort in knowing he was already gone, that the reason it took so much effort to keep his body working was that his body was simply done. Caemon may have been only three, but he was a boy who knew what he wanted and when it was time to go. I am grateful for that.

It is terribly hard to know that his disease was always going to win, that we were never going to get ahead of it, that despite his own strength, our boy was never going to overcome it. We will forever be brokenhearted over the loss of our precious son, but we also know that everything that could have been done for him–medically, spiritually, emotionally–was done. Of that we are certain.

69 thoughts on “code white

  1. Thank you for sharing your beautiful son with us. My thoughts and prayers are with you, and I can’t imagine the pain you felt writing this, and reliving that moment. You are the best Mom’s he could have ever hoped for, and he is such an amazing special little boy to both of you and everyone you have shared him with. What a special gift for all of us to have gotten to know Cameon through your words and pictures.

  2. Much love to you and your partner. Caemon sounds like he was incredibly loved. He is with you now as you move through the days. And is proud of both of you as you navigate through this grief.

  3. I have no words that can comfort you, but please know Caemon is always in my heart. Be gentle with yourselves and each other and know that there is a whole community pulling for you out here. ❤ ❤ ❤

  4. This was so heartbreaking to read. I can’t imagine what it was like to experience it. Or the strength it took to write it all down. But, thank you for sharing it with us. I was so shocked to learn of Caemon’s passing after following his story for all of these months, and this helps me to understand why it happened. But, of course it doesn’t take away my sorrow for you or for him. Wishing you peace.

  5. From one Mommy to another… I send my love and my heartfelt sympathy. I can’t begin to explain why someone so young and beautiful like Caemon had to suffer and leave those who love him the most… I won’t say that he is in a better place, because as a mommy, I know there is no better place than in your arms… For all the things I can’t say, or can’t find the words to express how sorry I am…I will say that Caemon has touched so many in his short while here. Your love that the three of you shared is rare and beautiful… may you hold on to those memories as you go through the tough days ahead…and know that you are not alone…

  6. I don’t know how long it took to write, all I know is it took me a long time to read between the tears. You have survived a parents greatest fear. I don’t know you, I just started reading your story after your sweet boy passed away. My heart breaks for you two. I love him, and I never knew him. Thank you for sharing. There are no words to express how I am feeling for you. Caemon was blessed to have two loving mommies.

  7. Sending love to you and wishes for beautiful, healing, reflective travel. You both are so strong. Thank you for sharing, I cannot convey what a gift your words have been.

  8. Thank you for sharing this with us, who’ve tried to be along this journey with you. I can’t imagine the pain you guys feel, but this I know – he was so so loved. And you made his time here better than I can imagine.

    Take care of each other. Take care of yourselves. And know we are here for you. And will always always remember him.

  9. I am in tears. This is crushing to read. I cannot imagine the experience as his moms. You have been through unspeakable trauma and yet you are still able to share so selflessly. You are so strong and amazing. I wish for your healing. Please travel safely.

  10. I hope that in the writing of your time with Caemon while he passed, and in our reading of your words, we are able to “take an ounce here, a pound there”. May the trip bring you both some moments of solace and peace.

  11. How incredibly generous of you to share this story. I’m humbled in the face of your experiences as a family. I treasure the medical team that gave your precious son such a respectful journey out of this mortal coil. As a mother, I grieve with you, for your son. Thank you.

  12. Thank you for sharing such a personal, painful part of your family’s journey. After reading this I went to Youtube and listened to Mary Hopkin sing Turn Turn Turn.
    Caemon’s ‘season’ was far too short and I will never understand the seemingly indiscriminate allotment of time. Your family has touched hearts all over the world and I so wish I could ease the next part of your journey but I know that’s not possible.
    I’m pleased you’re going away together for a time.
    With love from a stranger in Australia.
    Tricia.

  13. Thank you for these tender words. Although I did not know Cameron, I have been following his plight closely with a heavy heart and hopes for your miracle. Because, as you must have thought, “Someone has to receive a miracle, why not us?” These last, heartfelt words on his dying conjure up so many memories of losing the ones in my life so dear to me, my grandmother, my father, my sister and my beloved Mother. I thank you for putting into words, the words I could not express. Bless you both. Be strong and patient with one another and cherish the precious moments you had with your son!

  14. As a mom reading this, my heart is unbearably heavy. Your love and care for Caemon, his indomitable spirit and your generous sharing of your story are an inspiration. How can such a boy so loving and so loved NOT be miraculous? Sending you love and peace. Please be gentle with yourselves and each other. Safe travels. Xoxo

  15. I realized upon hearing the news of Caemon’s passing that it was only your unflagging hope that made it seem as sudden as it did. Your strength never ceases to amaze me. As difficult as this was to read, I know it’s only the faintest shadow of what you experienced during Caemon’s final days and hours. Sending peace and love your way each and every day.

  16. I am in awe of you both. The bravery, and the love you surrounded your boy with – it is inspiring. You met him each step of the way along his journey and I am forever grateful to you both for sharing your story and for sharing him with all of us. A beautiful soul. An incredible journey. So much love being sent your way today, and as you embark upon your next phase.

  17. All my love and prayers to you and I hope your trip brings some much needed rest. Your experience is so powerful and full of of love and devotion. I wrote out my experience of being with my brother when he died very soon after it happened and it was and is , very special to me almost 40 years later. Time changes memories and I knew I wanted to keep this one pure and intact. Only time heals the hemorrhaging heart and softens the jagged edges. I never want to forget . I mourn for your loss.

  18. My heart breaks, eyes shed tears, and emotions of utter helplessness as to what to say. I can only tell you that your precious baby boy will never be forgotten. I pray God’s perfect peace covers each of you. & We will be praying for all of your family. God Bless.

  19. I finished reading this with tears streaming down my face. I reached for my 9 month old son to hug him close & tell him again how much I love him. You know what he did? He put his nose to mine, looked into my eyes, pulled his face away, touched my tears with his hands & then said his new favourite word – “uh-oh!”. How do kids know?!
    I can’t even begin to understand the pain you both must be going through. My thoughts are with you, all the way from the other side of the world.

  20. The courage, and beauty, and grace with which you and Jodi have accompanied Caemon through his life — and with which you share your family’s sweetness and sorrows, both lifts and breaks my heart immeasurably. Tears upon tears. May your traveling bring you moments of respite; sending you strength and love.

  21. Thank you for sharing this with us. Your posts have taught me so much about life, death, hope, love, parenting, and so much more. As parents, we love our children and we teach them what it means to love, to know joy, and feel what it is to be alive. We do this for as long as we have them, and it breaks my heart that this little boy is gone, but it is evident that he knew love, he knew joy, he knew family, and he had the very best parents in the whole world. You are both role models for all of us. Take care of yourselves and each other.
    Ronit

  22. Amazing moms to an amazing boy. Thank you for sharing your journey, and your beautiful son. May you find some comfort and peace on your trip, and begin to heal your hearts. Hugs to you both.

  23. I felt like I was there with you reading this. I’m so sorry for your loss. No parent should ever have to bury their child.

  24. He is an amazing gift to you, and you to him. My heart breaks knowing that you are without him but I’m comforted by the knowledge that, not only was he supported and loved by you and Jodi, the most fierce and loving of mothers, but also by an army of others who he touched. You are all in my heart.

  25. it is a testament to your belief in your boy and your amazing sense of hope that his passing could have seemed so sudden to so many of us. thank you for sharing this incredibly painful story. i read it to honor him and his memory, to bear witness in some small part to all the things you have and will continue to do for him, for all the things he has and continues to do for you. i hope your travels bring you some peace and healing.

  26. Timaree:

    If this was part of my story, I would never survive. I would not know how to go back inside the walls that once surrounded a happy, healthy boy, where so many memories were made and where silence now fills the space–I wouId not close my eyes, I would forget to breathe, I would fade away. But that is not your way. No, you and Jodi are so much stronger.

    You take care, and you unselfishly give all of yourself; that is what you do. You write because it feels better and because you want to inform, educate, and maybe because you know your audience appreciates your perspective. You take care. You grew a beautiful boy in your womb and he was amazing because you took care. Here you are doing it again: taking care of all of your readers by sharing your most personal thoughts and emotions from the most difficult days of your life because you understand that we are all grieving with you and Jodi.

    I am relieved to know that you and Jodi have each other and that there is so much love; it is plain to see. I hope during your break, that you both feel the warmth of sunlight on your face and when you do, you smile, because that warmth is Caemon’s embrace, pulling you in closer to tell you he loves you forevermore.

  27. Hand on mouth tears, tears and more tears…
    Thank You for sharing Caemon, the care you have inspired is amazing…
    Just heartfelt tears, from a parent that has lost a son, just months ago, to you…

  28. A note in the chorus of condolences. I am Anna Villeneuve’s Mom. We’ve never met, yet I feel inexplicably connected to your family. I’d never heard Morley’s song “I Love You” before but now I hear it on a continuous loop in my brain which searches for words that would bring comfort. In the face of sorrow, you have shown great courage. Your writing is powerful and exquisite. I hope you publish Caemon’s story, giving this
    “Beautiful, beautiful boy” immortality. Caemon’s legacy is love.
    immortality. “Beautiful, beautiful boy.” Caemon’s legacy is love.

    storystory,givinhimimmortality. Caemon’s legacy is lov

  29. Sending love and strength as you walk this new and rocky path. Thank you for making the difficult effort to write, beautifully as always, the hardest part of Caemon’s story.

  30. My heart is so broken for you. We all believed with you. We stood here, watching, scared and hopeful. We wanted more than anything to believe those last cards would work. That we would see a miracle.

    And now we stand with you in your loss. And thankfully, with your words. We hold your love, your story, and sweet Caemon in our hearts.

    Riley brought a stuffed crocodile to school yesterday as her lovey and I thought of you. I always think of you.

    This is hard. My words fail. Yours don’t. Keep writing.

    Thank you. Peace to your hearts as you begin your trip.

  31. I wish you both so much love and healing during this time in your lives. Your writing is so beautiful, full of love and strength, and impossibly committed to remembering every moment of Caemon’s life. Thank you for sharing and for allowing us as readers to be there with you, in some way.

  32. Bless your hearts, there are no words to say that will make this any better for you. I think of you every single day. As we near closer to our infants transplant you have helped me realize that one step at a time is all you can do. Use this time away to celebrate his life and try to tend to your own wounds. God bless. Xo

  33. Thank you for sharing this with us. It was an honor to read about Caemon’s last day of life and how surrounded by love he was then and still is now. I hope your travels offer some measure of healing for you both.

  34. Every life is so precious….strong, brave boy and strong, brave moms. Thank you for sharing. I wish you love and peace.

  35. I too hope the time away will help with healing and bring you two together. I grieve for Caemon. My son’s and my tatoos are still on our hands. I can’t wash them off. I think of you daily and if there is ever anything you may need from Buffalo Ny or support through the internet Please message me.

  36. As I am driving to yet another appointment for my son who has a rare condition, my heart breaks for you two wonderful moms. I can only imagine what you have gone through. Thank you for being so strong and sharing your story with all of us! When times get tough for my son, my wife, and my family I will remember how strong y’all were and know that we too can get through it! ♡♥

  37. As hard as it was to read, I thank you for writing and sharing it. Caemon lived a full life, surrounded by love 100%. I wish you healing and peace as you move forward, and know that his memory will always be a blessing.

  38. There are no words for how heartbreaking this is. Thank you for sharing your story. I am sending you love and strength.

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