Thirty Days of Caemon–Day 25: B is for Books

Today, Jodi and I ventured over the Golden Gate Bridge and through the streets of San Francisco to the new UCSF Benioff Children’s Hospital. Our first visit to the hospital’s new location would bring us hugs and conversation with some of our favorite of Caemon’s caregivers, reconnection with our UCSF family. However, this was not our sole purpose for visiting. Today marked the delivery of our annual C is for Crocodile book drive donations.

In five large tubs, we packed over 350 books for children from babies on up to young adults. These books, sent to us by our generous community, will be distributed today to children on the pediatric oncology floor at the hospital.

Delivering the books.
Delivering the books.

The idea for this book drive was born in the early days after Caemon’s death. We wanted a means of honoring our son while giving back to kids like him. While we had seen many, many gifts of toys  and hats and bears and more during his stay in the hospital, we didn’t see many new books, and Caemon loved books. With two English teachers for mothers, I suppose that is no surprise, but he was enamored of his stories. He would often make stacks of books for us to read, and we would sit on the floor of his room reading together until we made it to the bottom. Our moments reading to Caemon were some of our most precious, and reading to him in the hospital brought us a little taste of home and familiarity. For these reasons and more, we decided to hold an annual book drive in Caemon’s honor, and I can say it is my favorite thing we have done in his name. Not only are we able to celebrate one of our son’s greatest loves (and ours too), but we can use this as a regular connection and expression of gratitude to our UCSF family. Beyond this, the book drive gives our community a way to connect, to give in a very real way to patients just like Caemon.

This past year, my dedication to this effort was renewed when I received an email from the mother of a patient at UCSF. This little girl had received one of our book donations, and it had helped her through a difficult time in the hospital. It was easy to see myself in this mother, to see my son in her beautiful bald daughter bravely battling leukemia. The message brought me to tears, for this one little book had done just what we had hoped: it brightened the day of a family going through the scariest time imaginable; it provided them a little respite from their lives on the front lines, a reminder of the basic routines of families of small children. Since that first message, we have kept in contact with this mom, following her daughter’s progress, cheering them on as this beautiful girl progresses through her treatment. And this year, as our book drive got underway, we received a big package from this family: they made their own donation of some favorite books of theirs, bringing the giving full circle.

Today, as we dropped off our big bins of books, it was hard not to imagine how much Caemon would have enjoyed this process, that he would have loved seeing his old UCSF friends and gifting them boxes and boxes of books. Instead, we pass on the gift of one of Caemon’s greatest loves and take some joy in knowing our boy would most certainly approve.

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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