Thirty Days of Caemon–Day Fifteen: Caemon in Print

There have been so many ways in which people have asked to honor our son, but one message from a dear friend shortly after he died took my breath away. She wanted our permission to use his name for a little boy in a series of books she is writing. How could we say no? Such a gift it is to see our son kept alive in the pages of her beautiful writing. But she hasn’t just kept Caemon alive through her books. As you will see, like many who loved him but didn’t know him, Caemon has wiggled his way into a number of facets of her life. Below, I share Anna’s tribute:

I never got to meet Caemon. I remember reading Timaree’s post when she revealed the secret she’d been carrying and following along as he caught up and passed his stuffed crocodile in pictures she posted. Every time I read about him, I hoped that someday we’d get our kids together to play. His death hit me deeply, which my eldest saw and asked about. I talk to him about how sad I am that Caemon’s moms don’t have him anymore. We wear our orange Take a Chomp out of Leukemia tees. The most significant effect that Caemon has had on me as a parent has been to show me how blessed I am when I am drowning in the challenges of parenting. When I’m up at three in the morning because one of my kids has wet the bed, I remember Caemon and am able to see how lucky I am. I am a better, more patient parent because of Caemon.

I still grieve that I never got to meet Caemon and am so honored that you have let me use his name in the novel I’m working on. Finding the right name for a character is tricky business, and I’d been having as much trouble thinking of a name for the first-born for the couple who started my writing career as my wife and I had finding names for our own children. When I did the math from book one to three and realized that my characters’ boy was close to three, I knew his name had to be Caemon. I’ve been surprised by how much he sneaks into scenes and am always delighted by his presence and the way he shapes the lives of the characters around him. In that way, I see his legacy alive–how powerful your boy is at shaping so many lives. That is what I want to honor.

Thirty Days of Caemon–Day Fourteen: I’ve Got You

When Caemon was diagnosed with leukemia, we entered a world that felt so isolated. Of course, we were isolated. We were in the hospital on literal “isolation precautions” because he had a cold and because he was so very sick. And even though we had family and friends coming together to help us in any way that they could, we had entered a world that no one else we knew had entered, that dreadful club of pediatric cancer moms.

I’ll be honest: initially, I avoided all of the other parents in the hallways at the hospital. I didn’t accept that we belonged there or that I was truly one of them. In mind, I was still convinced that all of this was going to turn out to be a big mistake, that he was going to have some strange virus, and before we knew it, we would be on our way, marveling at what a close call we had had. But it wasn’t a close call; there was no mistake. Our son had cancer, and we had overnight become cancer moms.

In those early days—all through his treatment, in fact—I’m ashamed to say that I did not want to hear from parents whose kids had died. I didn’t want to be reminded of my own child’s horrible odds, odds that we weren’t talking about, but it was unavoidable. A certain sign would appear on children’s doors when they were dying or had died. “Code whites” were called when kids stopped breathing, or worse. Reminders of our son’s mortality were all around us.

People asked if I had read the blogs out there, the other cancer mom blogs. Some nurses warned me against it, that getting into the headspaces these other parents had could be really detrimental to our desire to be positive. I did avoid them for the most part, and then, as I kept writing to update people on Caemon’s status, I realized that I needed to write a blog that wouldn’t be so scary to find, that other parents might actually benefit from reading, and that is where all of this was born. What I couldn’t have known was that this little bit of effort would prove to be a great connecting force to other cancer parents, and later, to other bereaved families as well.

It wasn’t long after Caemon died that we started receiving the occasional message from a family whose child was recently diagnosed with JMML. In those early days, it was hard to know how to be there for anyone who was just starting this journey, particularly when our child had had the worst possible outcome, but I sent resources, talked with parents over email, even sent a few care packages to parents in the hospital. It became evident in those moments that I had something to offer and that it felt good to give to parents who were in this horrible place we had been. It pulled me out of my own agony for a short time, and any reprieve from that was welcome.

A few months after Caemon died, I learned that the son of a doula classmate of mine had been diagnosed with leukemia, and he was being treated at UCSF. I reached out to her, not sure if she would want to hear from me given my son’s outcome but also knowing that there was no other choice. When someone’s child gets cancer, the worst thing to do is remain silent—but we also knew the ins and outs there. We knew that if she wanted the support, we could help. We made trips to meet her outside of the hospital (it was still too fresh to go inside), and we brought little care packages, bought her coffee, and mostly, we sat and talked, listened to what was happening, offered tips on how to make life a little easier. As hard as it was for us, and as hard as it must have been for her to face two moms whose own boy had died of leukemia, an important friendship was forged, one that would be even more vital as her own son relapsed and then passed away a few months ago. She told us a few times throughout the course of her son’s treatment and as he was dying that she looked at us with hope, that in seeing us alive in the world without our son, she knew she too would be able to live on without her son. And while she has her own path to walk through her grief, I see her doing it. I see her finding life through the anguish of her lost boy.

The number of bereaved parents who have contacted me, who have taken solace in my blog or in our direct communications is sort of surprising to me now. It’s not that I have any profound wisdom to offer them. I don’t know what it’s like to lose a baby just after he’s born. I don’t know what it’s like to lose a twenty-year-old child to suicide. I don’t know what it’s like to have a child die suddenly and unexpectedly, but I do know grief and how it festers and how, like a persistent toddler, it demands to be acknowledged. I know how crippling it is to live without one’s child, how desperate one feels to simply know where that child is. I know how desperately bereaved parents need to be seen, how their children need to be remembered, and how, more than anything, they just need people to be there, even without the “right” words to say.

I never imagined that this would be a part of Caemon’s legacy, that part of my dedication to honoring him would include honoring all the children I know of who have died while becoming a listening ear for their parents. But it also makes sense.

In the last eight months or so of his life, Caemon, when seeing me sad, would say, “Mommy’s sad. Come here, Mommy. I will comfort you.” He would hug me, pat my back with his little hand, sometimes even hold onto both sides of my face. “I’ve got you, Mommy,” he would say. That little nurturing soul always made me feel better.

So I guess when I reach out to these parents, when I respond to their calls for help, I’m doing a little of the same. I’m letting them know, I’ve got you. I’ll be here. Because childhood cancer and bereaved parenthood are dark, lonely places, and if I can lend a light or a hug or a listening ear, it’s what I’ve got to do. No one should walk these paths alone.

Caemon comforting a delicious (but sad) pumpkin muffin he made

Caemon comforting a delicious (but sad) pumpkin muffin he made

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 12: I Think I Can

Today, we have a guest blogger, Poppy. I have known Poppy online for years, and we finally met in person last year. She is a beautiful spirit who has offered us so much love and support. We have asked her to write a post for our Thirty Days project because she experienced a very profound transformation as she searched for a way to honor Caemon. We hope you will read this stunning piece.

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Several years ago, as I was trying to figure out how my partner and I might best go about making a baby (not an easy task for two women) I stumbled upon an online support group of sorts. These women were all like me, bought into a dream with all their hearts, trying to build families against all odds. Through our keyboards we shared our most intimate selves, taught each other, encouraged each other, celebrated victories and births and mourned shattered dreams. I knew the details of Caemon’s conception, the joys of his gestation and the magic of his birth, all via the screen of my iPad. He was part of a fierce and tight knit online tribe. He was one of OUR babies, wanted by all, celebrated by all. So, when we learned he had JMML, we were all shattered, shocked, devastated.

I admit when Caemon was sick I didn’t know what to say or do for the family. My words, my actions, my ability to give financially all seemed beyond inadequate in the shadow of what they were suffering. When Caemon died the feeling of inadequacy was magnified. I didn’t feel like I had the avenue, from hundreds of miles away, while enjoying the comfort of my own sweet children, to reach out to Timaree and Jodi and let them know just how much I cared about their boy and the loss of him.

Then one day I got a message from a fellow online tribe member, Bree. She said she was recruiting people to run a full or half marathon in honor of Caemon. Together as a team, people would raise money for the Leukemia and Lymphoma Society and train for full or half marathon events.  As she was telling me her plan on the phone I was laughing inside and thinking “She has totally got the wrong person here. I can’t run a half marathon and I have no idea how I would go about raising $2900! She’s crazy, sweet, but crazy”. For about a week I sat with her words and this idea of hers in my head. The more I thought about it, the more I wanted to do it. This would be my way to honor Caemon. This would be how I would show Timaree and Jodi that Caemon mattered to me, that they mattered to me. I called Bree, and reluctantly and with genuine fear about my ability to do what I was committing to, told her to sign me up. I was going to run 13.1 miles and go on to raise $3400 for Caemon. Me, who had never run more than 2 miles. Me who became ill at the thought of asking people for money. Me.

Over the next 5 months I trained with the Leukemia and Lymphoma Society’s Team In Training. I showed up to practices looking like a deer in headlights, completely unprepared for what lay ahead. They took me in, lifted me up, encouraged me, pushed me and taught me how to be a runner. Me, at 40 years old, a RUNNER! Each time I went out on a run with the team I amazed myself. My body got stronger, and with it, my self confidence. I was doing things I never imagined I was capable of. It was a great feeling to love my body, to learn what I was capable of, to push myself and to do all of this for a cause so dear to me.

Half way through the training season I felt amazing, stronger and more confident that I had ever been in my life. I was already running 13 miles on long runs so I decided to try to conquer a full marathon instead of the half. I sealed the deal by signing up for the San Francisco Nike Women’s full marathon and I asked Timaree and Jodi if they would meet me at the finish line. Running this race was going to be one of the hardest things I had ever done and I had no family or friends traveling to San Francisco to support me. I wanted them there.

Summer ended and race weekend arrived with the fall. I traveled from Seattle to San Francisco with my team and on race morning, stood in the dark, shivering, excited and a little terrified. The start buzzer sounded and the crowd of 30,000 surged forward, my running partner and I made our way across the start line. We ran, and ran, and ran. The miles were exhilarating, they were challenging, they were boring, they were overwhelming, they were painful, they were inspiring, they were completely exhausting both physically and emotionally. There was laughter, tears, anger, despair, elation and euphoria. I was stripped of everything I had ever known in those miles, stripped down to the very core of who I was, just my body, my brain and my soul working to get me to the finish line, and sometimes working against me, trying to get me to quit. Each time my mind or my body would try to get me to stop, my defense was thinking about Caemon and his struggle or thinking about Timaree and Jodi and the persistence and determination with which they fought. I would find strength remembering a video clip I saw of Caemon hiking in the Redwoods saying, as he tired from his efforts, “I think I can. I think I can. I think I can”. What I was doing was nothing compared to what they had been through and if they could do what they did, I could run 26.2 miles.

5 hours and 34 minutes later, with the help of my running partner, my teammates, my coaches and Caemon, Timaree and Jodi, I finally made it to the end of the race. As I came down the chute I scanned the spectators for Timaree and Jodi’s faces. When I saw them I was awash with relief. As much as I had done this for them, I needed them in that moment—it was a highly emotional experience. I had just done something that had changed me forever and they were part of it. They didn’t know it but their terrible loss had given me one of the greatest gifts of my life.

After I collected my medal I met Timaree and Jodi, for the first time face to face, and they ushered me through the process of collecting my bag and onto a train that would take us to brunch. My brain was not functioning properly, my body was completely exhausted and I was struck by the care and nurturing that they handled me with. They instinctively knew what I needed and stepped in to care for me as I struggled to regain control of my brain and body. I couldn’t help but make the connection between the way they were caring for me and the way they must have cared for Caemon. He was a blessed child.

We spent the rest of the afternoon together, with another of our friends from our internet tribe, having brunch at a cafe right around the corner from the hospital where Caemon was treated. I heard first-hand the horror, sorrow, pain, helplessness and despair of fighting his illness. I heard stories of the charming, joyful, loving boy Caemon. I sat across the table from Timaree and Jodi thinking that I had set out to do something for them and it turned out that instead, they had done something amazing for me.

Caemon’s legacy for me is the changes he has inspired me to make in my life. I am a better person today because of him. I am stronger than I ever knew, both emotionally and physically. I am still running regularly and plan to do so until I am old and grey. I still run and raise money for the Leukemia and Lymphoma Society and probably always will. I have a respect for my body that I lacked before. This body is a gift. I am grateful for it and I treat it as such. I approach new or challenging things with little or no fear now. I’ve done amazing things after all and there isn’t much I can’t do. I’ve set a beautiful example of health, dedication and determination for my kids. They run their own marathons around our house and have done several kid races. It makes me proud that they want to run like Mama. I’ve also learned to parent in a much more present and patient way. I sometimes find myself checking in with Timaree in my mind about how I’m reacting to a situation with my four year old twins and wondering if I would be proud of my choices in front of her. I understand the gift that my children are in a way I never could have before Caemon’s illness.

I am regularly grateful for the gifts the Marston-Simmons family has given me. I never met Caemon but he is part of me.

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Thirty Days of Caemon–Day 11: Croc Everlasting

Caemon drawing labs

Shortly before Caemon was diagnosed with leukemia, I was reading the book The Immortal Life of Henrietta Lacks, the true story of a young African-American woman who had died of a very aggressive form of cancer. Lacks’ cells were taken without her family’s permission, and they were grown and regrown for decades, sold to labs all over the country and became integral in making countless medical breakthroughs. Hers is a fascinating and tragic story, something with which I could only identify on an academic level as I read it.

The night we learned that Caemon had leukemia, we were asked to sign the first set of what felt like hundreds of sets of papers entering Caemon into this study or that, allowing permission for his blood and cells to be studied by countless researchers, and I found myself commenting that night, even through my shivering and shock, that we’ve come a long way since Henrietta Lacks. The doctor who was with us smiled sadly and agreed, and Jodi and I expressed our appreciation that something good might be able to come out of Caemon’s diagnosis. We wanted to help, and if they were taking his blood anyway, we may as well allow for them to use it to learn.

I don’t think I imagined in that moment, even as I alluded to Lacks’ own life and enduring cells that my son might gain his own immortality through the many blood samples that would be taken through the course of his treatment, but sure enough, he has, at least to some degree.

Caemon had copious vials of blood drawn during his five and a half months of treatment, and while most of those went to the lab to test for blood counts, viruses, chemo levels and more, some of them went to his oncologist’s laboratory to aid in her team’s research on JMML. On a fairly regular basis, a doctor from her lab, Dr. Stieglitz, would come to speak with us about Caemon’s status and would share information they had learned about his disease through their work. There was a certain reassurance in talking with him. He adored Caemon, and Caemon adored him right back, and  by talking about the basic science of Cameon’s disease and the changes it went through, we could begin to understand the mystery that JMML was–and is. We could already see that this doctor, who saw Caemon not just as a research subject but as an amazing little boy, an inspiration even, was going to help fulfill that wish that some good come from Caemon’s disease.

It wasn’t until Caemon died, and we were learning the results of his autopsy that we visited Dr. Loh’s lab where our son’s cells now lived. It was a challenging day, but already, her team was learning from how Caemon’s disease had progressed in his body, and I knew they would continue to learn about him. Dr. Stieglitz shared that he often worked with Caemon’s cells in the lab, that he always thought of him, pictured him, used his life as inspiration to keep searching. To hear this on such a difficult day felt so promising.

This past summer, over a year after that visit to the Loh Laboratory, we had contact with Doctors Loh and Stieglitz, who both shared with us that they were actively using Caemon’s cells in some fairly groundbreaking research, research that might allow them to understand why some kids with JMML do so poorly, why they relapse, why their disease progresses so quickly. They were learning from our son, who had proven to be an outlier with this disease in so many horrible ways, about how they might help other kids with the same mutations survive the disease. And to continue that research, they told us, because they didn’t have a limitless supply of Caemon’s samples, some of these blood samples, the last living parts of him, were being sent to a lab back east to be reproduced.

Our son is, indeed, in some very real ways, living on.

When we think about Caemon’s legacy, we often focus on what we do to raise money or to share his passions with other children, and these are no small matters. Every aspect of Caemon’s legacy work is sacred to us, but the signing of those papers during his treatment, the sharing of his cells may be the most life-changing thing we ever do. Our son’s own blood  may save countless other parents from the agony of shattered hearts; they may indeed help other children grow up. Caemon’s legacy takes so many forms–of love, of wisdom, of living in the moment, of embracing one’s fears–but those cells of my precious boy are a legacy of life.

Thirty Days of Caemon–Day 10: A Bench of One’s Own

Immediately after Caemon died, a community of bloggers crowdfunded for a permanent plaque which was affixed to a bench at the Oakland Children’s Zoo, directly across from the American Alligator (crocodilian order) exhibit.

Bench

We have visited this bench, held children in our laps while sitting on it, and yes, we have cried here too. It is a hard thing to see; for some reason, seeing something in writing makes it so much more real, and seeing our son’s name indelibly etched onto a memorial plate makes me wince to this day. But this bench, my son’s very own bench, is special too.

Caemon was not buried, so there is no gravesite to visit, but here we have a physical place we can go to feel close to him, and so too does anyone else who wishes to visit. Our friends have taken their children to this special spot and talked to them about Caemon. We love seeing pictures of kids crawling all over his bench and gazing in wonder at the fierce animal after which this boy was named.

It’s a gift we cherish immeasurably and are humbled and grateful to the community that made it happen. This part of Caemon’s legacy will leave its mark on anyone who sits for a moment under the cooling shade of the overhead tree and reads these words: Caemon was a beloved child: a chef, a nurse, a musician, a dancer; he was a wise soul, a teacher, and a healer of hearts.

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Thirty Days of Caemon–Day Nine: Fundraising for a Cure

Do you get tired of being asked for financial donations to organizations such as the American Cancer Society, Leukemia Lymphoma Society, or St. Baldrick’s? Do you wonder whether the funds raised for cancer research ever reach the intended destination? Does it feel like your money just gets thrown into the giant maw of corporate fundraising? Well, we wondered these things too, and we were cautious about getting involved in large organization fundraising for these reasons. We wanted to make sure that any money raised in Caemon’s honor would go to the right parties, and for us, that meant funding JMML research. There was a lot to learn about each of these organizations and we needed to ensure that they were a good fit for us and our legacy work.

The same year Caemon died, we formed an LLS Light the Night team which raised $10,000 for blood cancer research. We had one of the largest teams at the walk, all of us decked out in our Team Caemon shirts showing off our Crocodile Pride, and carrying gold lanterns in Caemon’s memory. We were honored with the “Most Inspirational Team” award at the end of the fundraising season, a poignant and bittersweet moment for us personally as well as for the North Bay LLS crew who had grown attached to us and to our son. We continue to fundraise and walk with LLS because they are a tremendous organization that supported us when we were in the hospital and after Caemon’s death, but more importantly, we walk and fundraise with them because they are directly funding JMML research at UCSF. Caemon’s oncologist, Dr. Mignon Loh, is one of the world’s leading experts on JMML, and she oversees a lab full of brilliant people actively working to unlock the secrets of this type of leukemia. They are able to do their work because of an LLS grant.

Caemon’s Uncle Seth spearheaded two St. Baldrick’s head-shaving events with his fire department, one of which I (Jodi) attended as a shavee. Because of these fundraising efforts, Caemon is now an honored kid for St. Baldrick’s, and as such, serves as inspiration for other fundraising events. We were honored to send Croc tattoos and photos of Caemon to a bay area roller derby team who hosted a shaving event. A research fellow at UCSF, Elliot Stieglitz is the recipient of a St. Baldrick’s grant, and he has been studying Caemon’s cells since his diagnosis. Dr. Stieglitz’s work will be explained in a later post, but we firmly believe the work being done will lead to a better survival rate for JMML patients. We are extremely proud of him, and we will continue to partner with St. Baldrick’s and support his research.

Curing childhood cancer is not out of our reach. At one time, a diagnosis of Acute Lymphoblastic Leukemia (ALL), the most common type of childhood leukemia, was a death sentence, but today, because of research, children with ALL have a 90% chance of survival. Sometimes it is hard to see any tangible evidence resulting from all of this fundraising, but when I think about childhood cancer survivors, like Bat Kid, I am encouraged. There should be a lot more like him, leaving leukemia in the rear view mirror and getting on with the business of growing up. The stakes don’t get higher than that, and we are determined to see that happen.

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