Thirty Days of Caemon—Day 13: A Family for All of Us

When Caemon was born, Timaree and I transformed from a couple into a family. As someone who doesn’t have a biological family of her own, it’s difficult to explain just how significant this was in rooting me firmly into my life, giving me a purpose beyond self-serving pursuits. I felt a deep obligation and sense of pride in parenting him. I had waited my entire life to have a loving family, the one I had always wanted, and I would be forever changed as a member of the Marston-Simmons family. It’s one of the most horrible aspects of losing Caemon—the loss of our family. Of course, Caemon’s legacy would ensure that we had some incredible people to call family, people who would carry us when we couldn’t walk by ourselves.

Because of our son and the relationships he fostered in the hospital, we have an extended family of beautiful, caring souls at UCSF. Caemon would not allow nurses, doctors or other hospital staff to enter his room without some kind of personal interaction. He wasn’t about to let people prod or poke him unless they courted him with whatever might amuse him on a given day: being allowed to play with their tools and gear or a gesture of generosity (chocolates, usually, then medical supplies). Once he had captured someone’s heart, that person couldn’t stay away, and soon enough no longer needed bribery to be accepted into our expanding hospital family. These professionals learned to interact with him as a person and to share his interests; the more time they spent in his room, the more Timaree and I also got to know them. We formed a partnership with them that would help him (and us) navigate some scary waters. Somewhere along the way, that partnership morphed into a family.

It didn’t start out that way, at least not for me. The sudden, terrifying whirlwind we got caught up in when Caemon was diagnosed almost entirely stripped me of my role as Mama Bear, and I didn’t like it one bit. Let me explain: before leukemia, strangers didn’t touch my son, walk into our home, or make rules about our lives. Before leukemia, we had a quiet, private life with a few friends, a daily routine, and an established protective perimeter around Caemon and our family. Obviously, that all changed, and I had to trust strangers in order to save his life.

It was hard. When the research fellow Elliot Stieglitz (whom Timaree wrote about this week) came to meet Caemon for the first time, I looked at him and said “My son is not a specimen; he’s a little boy. Treat him as such.” The look of shock on his face told me that he had never been confronted like this by a parent. But I wasn’t sorry. I needed to establish that one point with him. You see, Caemon’s disease is so rare that they only diagnose and treat one patient with JMML about every five years at UCSF. As a result, the interest in him was high, and we were visited by a number of curious staff who were eager to put a face to the disease they were studying. It was early on in the process, and I hadn’t gotten to know them, but my Mama Bear instincts are fierce, and I was determined that these people see him, not just his leukemia, but him.

I didn’t know it then, but Caemon would capture their hearts so thoroughly that there was no chance he was going to be treated like a specimen. They would fall in love with him, even the research doc I stunned on that first meeting. I need not worry about him dehumanizing Caemon. No one was immune to our boy’s love and light. The affection he inspired in them amazingly transferred to us. These professionals didn’t just love Caemon, they came to care about me and Timaree as well.  Oh boy did we need it.

We needed Nurse Tall Maggie’s immeasurable competence and loving touch with our boy. We needed Nurse Ann to tell us to go to sleep when we watched over Caemon all night long in BMT. We needed the cups of coffee and other culinary offerings they brought us to keep going on those long days in the hospital. We needed Sally’s silliness, Kelly’s dance moves, Kenny’s compassion, Brie’s attentiveness, Amber’s experience, Amy’s optimism, Abby’s steady presence, Scott’s quiet comfort, and Peggy’s wise counsel. We needed all the people I haven’t listed, all those people who played such an integral role in Caemon’s care. We needed the friendship offered by these people the strength, and the shared sorrow when we lost him. The sadness felt on the pediatric oncology floor when Caemon died would challenge even the most seasoned professionals. They came to his memorial, cried with us, and one of them spoke to the audience about Caemon’s impact on them. She said that Caemon brought the hospital to life and reminded them all why they do what they do.

They are our family; they will remain so forever. They were there for us during the absolute worst experience of our lives. They held us up, celebrated the victories and mourned our collective loss of the beautiful little boy they worked so hard to save. They continue to reach out two years later, to check on us and attend events in his honor. They offer love and sympathy, and never pass up an opportunity to share their favorite Croc memories. In so doing, they help keep him alive, and that is a part of his legacy left to all of us.

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2 thoughts on “Thirty Days of Caemon—Day 13: A Family for All of Us

  1. Victoria

    What a gift the UCSF family gave to you and what a gift you gave to them by writing this blog entry and reminding them how critically important their interactions with patients’ families are…thank you to all the kind and empathetic members of healthcare teams who can look beyond the “specimen” perspective.

    Reply

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