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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Thirty Days of Caemon–Day Six: Nurse Love, Part I

Caemon had a tremendous impact on everyone he met at UCSF, but few knew and loved him like his nurses. The relationships he formed with them are such a huge part of his legacy that one blog post is not enough to do it justice. We will likely return to this subject again before the month is over.

Nurse Amber, aka "The Caemon Whisperer"
Nurse Amber & Nurse Caemon

We begin with Nurse Amber, a veteran RN who has spent her entire career in pediatric oncology. The day we met her, Caemon had just gotten his hospital haircut, and as a reward for being so patient and still under the clippers, we gave him his Halloween costume early: a set of royal blue scrubs with his name embroidered on the front. He was so handsome and proud with his uniform and stethoscope and name badge. We took him for a walk down the hall, and the nurses fairly swooned at the sight of him. Amber stopped in her tracks and asked “Who do we have here?” From then on, the two of them formed a tight bond; they respected each other, played together, and she was one of his first teachers when it came to learning the basics of nursing. She helped him, and us, set the tone for the remainder of our stay on 7Long. We asked her to write something about Caemon’s impact on her, and here’s what she shared. 

 
Caemon was an incredible little boy. I had heard how incredible he was and how I needed to meet him. It was my lucky day when I got to walk through his door early one morning and be his nurse.
Caemon was such an old soul who had much wisdom to impart on the world in his short time with us. His ability to manipulate his environment to make it a safe place for him, a place to learn and explore, was incredible. He took the scariest experience anyone could be put in and made it ok. He made friends with the objects around him that could have otherwise been very scary. He made his small hospital room come alive, and he brought everyone who was willing to take the time into his world that was safe and secure. He taught everyone he met a lesson on how to deal with difficult situations. His ability to understand feelings and emotions at such a young age never ceased to amaze me. He gave the best hugs, the most genuine, feel-it-in-your-heart, hugs.
It made my day to get to hear his little voice asking questions about how things worked and why things needed to happen this way or that. Then to hear him working it out with his medical toys, talking to the objects that had become friends, processing what was happening to him.
Knowing Caemon has made me a better nurse. I have used ways that Caemon dealt with being hospitalized to help other children who are battling the nasty cancer monster. I have seen these children visibly relax when I help them make friends with the machines and devices that are being used around them. I regularly think of Caemon and what he would have done in a certain situation and how that may help the child whose room I am currently in, how I can use part of that incredible little boy to help this child who is scared and worried by the unknown.
But he hasn’t only impacted my nursing life. Caemon loved the world around him, and he found joy and pleasure in the little things. He reminded me to slow down, look at the world around me, have a tea party, listen to some Jack Johnson or Lumineers while looking out the window at the trees, make some muffins and then eat them all up hot out of the oven, read a story, slow dance with the ones you love, take a drive just beauase, not just to water the garden, but to enjoy it and take wonder in all that is growing. Caemon reminded me to enjoy the everyday and take in the beauty that is the world around us. This little boy will always hold a special place in my heart. His life was far too short, but his impact on the world was enormous.

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