Thirty Days of Caemon–Day 30: The Marston-Simmons Family

There were many weeks during Caemon’s treatment when Jodi had to go home to teach for a couple of days. It was so hard on all of us, and especially for Caemon. As he started to understand that she would return, he would say on the nights she wasn’t there, “Mommy, an important part of the Marston-Simmons family is missing!” I would agree, and we would try to talk to Mama on the phone, easing his worries a little, letting him know she would be back. It heartened me to know that our family unit was so important to him, and it saddened Jodi and I both that he had to know what it felt like for one of us to be missing for any length of time.

When Caemon died, though, the most important part of the Marston-Simmons family was missing, and he has been missing for two long years. Before Caemon, there was no Marston-Simmons family. We were Jodi and Timaree, and while we had been together for eleven years when Caemon made his arrival, we were always a couple, never a family.

Caemon made us a family.

As he gained more language, he loved calling us the Marston-Simmons family. He was proud to be a part of it. All sorts of things were named for our family. There was the Marston-Simmons Family book and the Marston-Simmons family song. Our family was his world just as he was ours.

Since the most important part of the Marston-Simmons family has been missing for so long, we haven’t felt much like a family, even though we most certainly are. We have gone back to being a childless couple, each with our own last name, no small hyphenate to bind us into a familiar family structure. It has been two years of anguish, two years of feeling hollow, two years of missing being a family.

But all of that will soon change: I am pregnant with Caemon’s baby sister. She is due to arrive in late July, and we are so excited to meet her.

There is so much wrapped up in having another baby. There is the return to the family structure for which we have so longed, yes, but there is also an awareness that this little girl will not be Caemon. We cannot expect her to be. Of course I hope to see some part of him in her—maybe something of his twinkling eyes, his smile, his laugh—but she may be nothing like him at all, and I’m also ready for that. You see, one of Caemon’s great lessons to me was one of accepting a child for whomever he or she happens to be.

By the time I was pregnant with Caemon, Jodi and I had been talking about having a daughter for years. We were both fairly certain we would have a girl first, which made learning that we were having a son surprising to say the least. The beauty of all of that was that our son was just who we needed. Having a boy after all those building expectations of a girl allowed me to let Caemon be Caemon. Jodi and I celebrated who he was, whether that was nurturing and creative, rough and physical, quiet and introspective, loud and opinionated—and he was all of those things and more, and all of those qualities made him perfectly Caemon.

I must admit that a year ago, I could not fathom having a daughter. I’m sure that I hoped to have another boy like Caemon. Who wouldn’t want another sweet, articulate, wise, and loving boy like him? But once again, life is handing us the child we need, and once again, I can apply that lesson that Baby Caemon taught me: that first and foremost, we must let this child be whomever she is meant to be, to honor that in her, to love that she is one of a kind–just like her brother.

There is so much of this I wish we were sharing with Caemon. I think he would have been proud to be a big brother. I think he would have been amazingly helpful. I think he would have read to his sister, comforted her, loved her, and I know she would have adored him. Instead, we have the task of helping this little girl love and know a brother she will never know while also working to help her have a normal life—as normal as it can be. But most of all, I suppose I have to let go of the fear that comes with having another child—the fear of losing her, the fear that I won’t love her as I loved my son, the fear that somehow she will always live in his shadow. To parent Caemon’s sister, I have to lead with love, just as he taught me for three and a half years. Caemon’s legacy will most assuredly live on in our daughter.

And he may live on in her in very real ways. Recently, I have read some mind-blowing articles about fetal cells. Scientists are discovering that during pregnancy, cells from the fetus cross the placenta and into the mother’s blood stream. Their research has shown that those cells may take up residence in the mother’s blood stream, her brain, even her heart. They may act as stem cells and help repair damaged organs, prevent disease, and do a whole host of things that we never imagined. But more than this, it is believed that some of those same fetal cells, the cells of a woman’s prior pregnancies, very likely pass into the woman’s future children.

Yes, our little girl may very well carry a physical part of Caemon with her throughout her life. In so many ways, this tumbling, kicking, lively little girl in my belly is her brother’s living legacy.

The Marston-Simmons family will always be missing a very important member. We will always wonder how Caemon would have completed our foursome, what sort of big brother he would have been, what sort of grownup son he would have been. We will always have a hole in our hearts and our lives and our family where that boy should be. But we know now that the Marston-Simmons family did not die with Caemon. It couldn’t. What he helped create was the eternal magic of family, a space for two moms to love both of their kids, one in this world and one beyond.

Image Courtesy of In Her Image Photography.

The Marston-Simmons Family, Part I

Baby Sister

Baby Sister

Thirty Days of Caemon–Day 29: A Digital Sanctuary

Blog1I have been a writer for as long as I can remember. In grade school, I published stories. I would sit outside at our home in the Sierra Nevada foothills and write while pondering the trees and the sunset. When I got to college, pursuing multiple degrees in English was not much of a stretch, and teaching writing was no stretch at all. I have always taken comfort in the written word. A life-long introvert, my best processing happens between my mind and a pen or a keyboard (I have long joked that I hold a good percentage of my brain in my fingertips).

When Jodi and I started the process of trying to have a baby, it was the early days of blogging, and I began finding the blogs of women working to create their own families, women who already had, and I knew very quickly that we would chronicle our own journey toward our family. And I did. With our first blog, I wrote about every disappointment and triumph. When I was pregnant, I maintained a pregnancy journal on that blog, complete with ultrasound images and pictures of my growing belly, and when Caemon arrived, I had plenty of new material. I wrote about his birth, the joys of new motherhood, even the struggles we faced as a two-mom family. Just as I have spent my whole life writing, Caemon’s whole life has been carefully recorded, albeit primarily anonymously, since before his conception.

When Caemon was diagnosed with leukemia, I was obviously in shock, but I still had to write. I wrote on my old blog that we had taken up residence in a children’s oncology ward. I wrote that Jodi and I had become the mothers of a boy with leukemia. My readers came out in droves wanting to help, but I couldn’t spend the time there that I once had. Jodi and I learned quickly that we needed a means of communicating with family and friends, so instead of using that old anonymous blog, we started up a CaringBridge site. It’s what people were doing, so we gave it a try. We could write brief updates there, share the occasional photo, receive donations, and manage the page pretty easily. And it was there that I began writing about Caemon’s illness. There was something keeping me from really writing though. I felt restricted to a just-the-facts sort of approach when I wrote, and while functional, it wasn’t me. By the end of Caemon’s first full month of being a boy with leukemia, I knew it was time for us to have a proper space for sharing Caemon’s progress with our community, and C is for Crocodile was born. Finally, I had found a suitable home for the writing I needed to do through my son’s illness.

If it was space I needed to open up, then open up I did. Writing on a blog again felt like picking up a favorite pen and trusted journal. I found myself writing many nights when I would stay at Family House or when I was awake late after Caemon fell asleep. In the hospital, writing became my escape, my sanctuary, my cozy blanket and warm cup of tea. On those nights when I wrote, often in a dim room with only the lights of IV pumps and the glow of my laptop illuminating my space, I could find a little peace. I might cry, even sob for awhile, but I would often wade my way through whatever trying moment we were experiencing, and I would find enough comfort to be able to get some sleep. The therapeutic quality of the blog was tangible.

When Caemon died, I didn’t know I would keep writing. I didn’t know that I would have anything more to say, particularly that I would want to share with the large readership that had grown around this blog, but it took no more than a few days before I started up again. At first, I may have felt a sense of obligation to continue telling his story, but with my first few posts, I discovered that writing still felt like the right thing to do, and as two years have now passed, it still does.

Jodi asked me a couple of weeks into our Thirty Days posts whether I wanted to talk about the future of the blog, what I wanted to do with it, and I instantly bristled. I have certainly asked myself before whether it was time to move on from this space, but no one had openly asked me that question. I searched myself for a moment, and then I replied with certainty that the blog would keep going, that this space was something I wasn’t ready to leave behind, that I didn’t know if I ever would be.

The truth is, I have done some of the best writing of my life on this blog, and in the process, I have received amazing support—even national recognition. I have been asked to write for the blogs of our favorite charities, guest blog with other cancer moms, even write about Caemon’s medical play. The honor of being asked to write is something I only imagined as a young English major. But honestly, even without any of that recognition or the kind comments here or the many boosts to my confidence, I would still write because through this blog, I have found a path through my grief that works best for me. I have been able to capture the most challenging time in my family’s life with accuracy and detail and authenticity.

When I started C is for Crocodile two and a half years ago, it was a place to chronicle my son’s journey through cancer. I initially intended to shut the blog down after Caemon was cured. I thought I might use it for a year and then leave it up to remember that lost year we spent with leukemia. I never imagined I would share his obituary here or the story of his death. I never imagined I would write about the agony of living without him, the beauty of a community coming together to hold up what remained of our family, the small joys we might find in celebrating his life. I never imagined this space would feel like such an extension of myself. For an introvert to take solace in a place where, at times, thousands of people are watching seems strange, but this is Caemon’s Mommy’s home, and so long as I am alive, I will be the mommy to a little crocodile who changed the lives of every person he touched, people quite literally all over the world.

So this blog, too, is part of Caemon’s legacy. It helped me find a public voice. It helped us build a community. More than that, it allows us to share the magic of our son with the world. C is for Crocodile is here to stay. It may change from time to time. It will likely lie dormant now and then, but so long as this space remains, my son’s story can live on too.

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Thirty Days of Caemon–Day 28: Nurse Caemon

IMG_8425From Jodi

One day while Caemon was experiencing pain from his transplant, one of his nurses walked in with a two-chambered medicine pump, from which dangled two silver keys. Caemon pointed at the top pump and said matter-of-factly, “That one is for the epidural.” The nurse’s jaw dropped as she whipped around looking from me to him incredulously. Her expression—which said “did I hear him right?”—was hilarious, and it begged the question, how did he know the pump was used for both morphine drips and epidurals? Obviously at some point, he heard it from another nurse, stored away the information, and pulled it out of a hat at just the right time to surprise and delight Nurse Sally, one of his best buddies in the hospital.

Caemon admired and emulated all of his nurses, or the ones who indulged him, anyway, which was almost everyone. His relationships with his caretakers were extraordinary; with them, he played, he learned, he worked, and he grew. This, I was told repeatedly, was unheard of with kids his age. Usually when nurses walk into the room of a toddler, they are greeted with crying, tantrums, and generally uncooperative behavior. Not surprising, really, given that these kids are tethered to their beds, unable to explore. They are poked, examined, and forced to take oral medications that taste like soap, or worse. How are these children supposed to cope in a foreign environment where they have absolutely no control and no power? Even adults crumple under the strain of long-term hospitalization and treatment. Well, Caemon found a way to cope, to feel empowered, and in so doing, taught a lot of people about what a child is capable of given the encouragement and opportunity.

The first week in the hospital, Caemon was too sick to notice his surroundings, but as he began to IMG_7717feel better, his curiosity took over. He was fascinated with the dangling objects his doctors and nurses hung around their necks: stethoscopes, ID badges, flashlights, etc. One of his nurses caught on to this and gave him a real stethoscope—not one of those fisher price plastic ones, but a real, operational stethoscope—one that he could keep. He very quickly learned how to examine his teddy bears, first listening to the heart, and then the lungs in the back. No one told him how to do it; he just copied what others were doing to him.

IMG_7702He covered his bears with tape and Band-Aids, and before long began acquiring plastic medicine droppers, one of his rewards for cooperating with the oral meds. He hoarded these, collected them in every size and color, and his stash grew so big, we had to secretly thin his cache from time to time. Pretty soon, someone gave him actual tubes with real lines, lines he could “flush” and put caps on. He practiced flushing these lines and listening to human hearts and lungs with his stethoscope, insisted on taking his own vitals, and took particular interest in the nurses’ pagers and phones. He didn’t just play with the tools and gear around him; he was in training. He learned what these instruments were, what they did, what they were for, and he acquired an unbelievable amount of information about his treatment. The focus and intensity he exhibited while working with these objects was truly extraordinary to behold; so was his grasp of what was happening to him.

OLYMPUS DIGITAL CAMERA“I’m pushing the chemo in and the leukemia comes out” he explained once while engaged in his work, his tools spread around him as he focused intently. By this time, he had a toolbox stuffed with every type of medical supply imaginable, from mundane bandages and swabs to more exciting tubes, clamps, IV bags, and supplies too big to fit in his box, supplies sent by RT (Respiratory Therapy) because they also wanted to honor his love of medical play, and my son knew what all these tools were for and how to use them.

How much he understood about chemo, leukemia, IV’s or any of the world he found himself in, I don’t know. But he had the language to ask questions, to listen to the answers, to engage, and to act accordingly. His language skills allowed him to have conversations with people, and I have been told that he exhibited more understanding of his environment than children much older than him.

Timaree and I purchased a set of children’s scrubs embroidered with his name, meant to be his CaemonPhoto2Halloween costume that year, but he was so enthralled with nursing that we gave the scrubs to him early. He was so proud wearing them, and he wore them often, always introducing himself as “Nurse Caemon” when in uniform. His nurses also wanted to adorn him, and one made him an ID badge that looked official, like his; they gave up their flashlights and emptied their pockets of whatever supplies they had, all because it made him happy. It made him feel connected, useful, productive, and valued.

His training advanced enough for him to visit the supply room, perform his own charting at the nurses station with Amber, and to learn to program IV and medicine pumps. Nurse David taught Caemon how to flick the air out of his lines to deal with his constantly-beeping pumps.  He acquired his own patients and gave Timaree and I PICC lines, dressing changes, and whatever else he was in the mood for.

IMG_0082His medical play overshadowed other types of play he had previously been interested in, and when he was allowed to visit the playroom, he showed limited interest in other activities, almost always heading for the medical play area first. He would stock up on supplies and call us over for our treatments. In the hospital, Caemon needed the Nurse Caemon identity, the skills and words that came along with it, and he needed the camaraderie this mutual interest built between him and the staff. He found his own way of coping through medical play and blossomed because of the confidence it helped him build.

Medical professionals know that medical play can be a powerful form of therapy. Or it can be just play, a new set of toys to manipulate. Kate recognized Caemon’s keen interest early on, and in handing him his first stethoscope, handed him a way to feel empowered, and he grabbed on to it. It got him through some really tough moments, and I cannot tell you how grateful I am that he had this to lean on. But even the most seasoned hospital staff were gobsmacked at Caemon’s level of interest and aptitude for nursing. It wasn’t just his verbal skills, but his ability to remember and implement everything he was being taught, even a throwaway comment about an epidural. They have never seen anyone like Caemon before or since, and for that reason, his impact is felt very deeply by them, even now, two years after his death.

We make very few visits to the hospital where Caemon died, for obvious reasons. Last week, we got a tour of the new hospital at Mission Bay while dropping off the book drive donation, and we ran into a few friends who stopped to reminisce about Caemon. They miss him, the most adorable little nurse they ever knew, and to tell us they also carry on his legacy of helping kids cope through medical play. They use what Caemon taught them about the power in having agency in one’s own care. He lives on through them in a very tangible way when they employ these strategies, and in so doing, help other patients cope.

IMG_0081Because this part of his legacy is so unique and specific to Caemon, C is for Crocodile made an additional contribution to Child Life Services last week: a box of blank ID badges, badge holders, colorful lanyards, flashlights, and a dozen sets of scrubs in various sizes—all the dress up gear for the young nurses and docs in training. Medical play at the Children’s Hospital will expand to a new level because of Caemon. How awesome is that?

I don’t know what he would have grown up to become had he been allowed to live, but I know what he was for the last few months of his life: he was a nurse, and a damn good one at that. Epidural indeed!

Below are a couple of Caemon’s medical play videos:

Thirty Days of Caemon–Day 27: Family Heirlooms

It is no secret that family was very important to Caemon, and this is in large part because he had the opportunity to see our extended family quite a bit in his three years. He was the second grandchild born to the family and the first grandson, and our family knew just how much we wanted him. Everyone did. Caemon’s arrival was celebrated by our loved ones, and he continued to be a favorite cousin as the family expanded by yet another grandson the next year.

It should be no surprise, then, that our family carries on Caemon’s legacy in their own unique ways, each of them continuing to love him in his absence.

The summer of Caemon’s diagnosis, before we suspected he was sick, Jodi and I planned a big road trip to the Southwest, and we invited my mom to come along. Caemon was very close to his grandma, so we knew having her there would not only be great for us but a wonderful memory for the two of them. Caemon was a wonderful traveler. He could easily abide long hours in the car so long as he could listen to good music, eat tasty snacks, and engage in fun activities.

And sure enough, Caemon was a great sport. He loved the start of each day as we made our way to each new “nice room” (his term for hotel rooms. He enjoyed having adults in the backseat with him, and we have sweet memories of him holding his grandma’s hand as he napped, watching trains and towns and deserts go by from his carseat, all while wearing his ultra-cool shades. Arriving at each new destination was an adventure in itself. He would explore the rooms, check out their coffee makers and hair dryers, and he and Grandma would often make their way to the hotel’s “warm pool” (hot tub) to unwind from the drive. Caemon loved the time he had with his grandmother on this trip, and she enjoyed getting to know his daily routines, his funny preferences. One day when Jodi and I had run into a store for something, he and Grandma sat in the car together, and he asked her over and over to play Bob Marley. Not quite understanding his pronunciation, she had to ask him a few times what he wanted, but they figured it out, and our boy got to enjoy some great reggae with his Grandma.

The trip was full of sweet memories like these, new experiences that none of us would ever forget. Caemon got to see the Grand Canyon, the San Diego Zoo, Mono Lake, but more than that, he got to experience what it is like to have an adventure with family, and he loved it. We all did.

It must have been the summer after Caemon died when Grandma and Grandpa decided they would start taking the other grandkids on their own adventures. Caemon’s older cousin Bri was able to travel with Grandma and Grandpa to a few fun destinations, and as he got a little older, his younger cousin Zander had his travels with the grandparents too. It seemed that in taking that trip, my mom learned what a joy it can be to travel with children, how rewarding it is to build those memories, and she seems determined to do this as much as she can now.

Other family members have found their ways to carry on Caemon’s memory too. When we were in the hospital, my brother-in-law and sister started the “I’m a Crocodile” movement, sending croc tattoos to anyone who wanted them, urging them to send photos, and last year, they presented us with a book full of those photos of all kinds of supporters—from family and friends to his doctors and nurses to total strangers who were following his story. It’s a book of hard evidence of just how many people have been impacted by our son.

Last year, my brother, a firefighter, started hosting annual St. Baldrick’s head-shaving events with his fellow firefighters. In doing so, he has created a whole-family event. His little boy shaved his head last year for Caemon. My mom and sister both acted as event volunteers. My dad showed up to shave his head. So did Jodi. And they raised a lot of money for childhood cancer research in the process. Each year, Caemon’s uncle plans to do the same, building his events, gaining publicity, and sharing Caemon’s story with those who will listen.

The fundraising doesn’t stop with the adults in the family, though. Even Caemon’s older cousin has gotten in on it. In fundraising for our LLS Light the Night Team, our niece (and her mom) set up a lemonade stand, earning a substantial donation for our team—and in the process, they met neighbors who started their own lemonade stand to add to the efforts. My niece continues to fundraise for LLS at her school in penny drives. She’s really quite good at it.

But beyond the fundraising, the kids in our family carry on in their own ways. His cousin Bri remembers him well, grieves him still, and she tells stories of Caemon. Occasionally, she will come to us telling us she has a memory. She has memories with her grandparents and Caemon that we don’t have, moments she can tell us about that we haven’t heard before. She is a memory keeper. And so is little Zander, who was a year younger than Caemon. He loved his bigger cousin, and while his memories of him aren’t as sharp, Caemon is still a part of his consciousness. On more than one occasion, he has come to me during a family gathering to hug me and tell me he misses Caemon or that he is sorry that Caemon died. To know that these children won’t forget him, that they will carry him with them throughout their lives, even help the younger kids in the family know who he was is one of the most precious legacies anyone can carry.

And just this week, Caemon’s grandpa offered to build us a little free library we have been wanting to put on our street in his honor, another way for all of us to keep carrying on our boy’s love of reading. These gifts from our family—to us, to the rest of the family, to the world around us—just keep coming.

Caemon’s family members are all finding their ways of keeping him alive in ways that are right for them. We share stories. They come to events in his honor. They listen to us talk about him. They keep photos of him around and talk to the kids about him. He is still very much a part of our family and always will be.

On the first Christmas without Caemon, Jodi and I were hesitant to come to the big family event. We wouldn’t have our son; we would feel empty, alone, out of place, devastated. But we wanted to see them, to feel their love around us. My parents have a tradition of putting stockings up for everyone around the mantle, and we all fill the kids’ stockings with treasures. On that first Christmas, I was in such a fog that I didn’t notice his was hanging until Jodi mentioned it. She didn’t know if she wanted it up there looking empty, so she picked it up. But it wasn’t empty. Inside were notes, pictures, and ornaments for Caemon. They had all decided they wanted a way to remember Caemon, and they did. This year, his stocking was full of his favorite chocolates, more ornaments, more notes. I don’t know how long the tradition will last, but knowing that we can trust our family to keep his memory alive, that we can keep him in our family traditions, that we can help the other kids remember him or know him at all, well that’s something sacred.

Caemon loved his family, and they loved him, and in those moments when I fear he may one day be forgotten, I look at all they do to keep him here, and I breathe a little easier.

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Thirty Days of Caemon–Day 26: Caemon and Carol

Today’s post comes from our very dear friend Carol. She was a special friend to Caemon and an incredible support to Jodi and I both in the hospital and after Caemon died. Her presence during Caemon’s treatment and her countless efforts to help support our family in innumerable ways during the course of Caemon’s treatment will always be a treasured gift to us. Below, our beloved friend shares Caemon’s impacts on her.

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I met Caemon before he was born – really, before he even was conceived. Jodi and Timaree wanted so much to be parents, were so sure that this was their path, and so dedicated to making it happen. Their child was a tangible presence before he arrived on Earth.

I was overwhelmed with joy when they shared their news. Timaree was pregnant and the embodiment of Mother, and Jodi equally diligent and dedicated to being Mama. I remember the day they showed me his room, which also revealed his name and its meaning. C A E M O N was spelled out in colorful wooden letters, and a large stuffed crocodile was waiting for him.

When he was born, I visited them at the hospital and got to hold him when he was barely 24 hours old. I never dreamed that just three years later the four of us would again be sitting together in a hospital room.

Croc snuggling with our special friend, Carol.I  am one of the lucky ones that knew Caemon. I have more treasured memories than I can list here: making cakes for all three of his birthdays; walking along with him in a stroller sucking my finger when he was teething; playing in his room on what turned out to be his last day at home; sharing a special crystal just before his transplant; a magical connection while napping with him just days before he died.  The last treats I baked for him were cream cheese brownies. He loved them. I promised to make them again when he finished his treatment and felt well enough to eat.

When Caemon was diagnosed with JMML, I knew I would be IMG_0073showing up in some big way for this journey. I was so grateful to be able to help: I created his Facebook page, did fundraising, and spent time at the hospital for several hours every week. Those visits were precious and also could be very intense. While I found myself rising to the challenge of this, I was astounded at what I witnessed in Timaree and Jodi. My experience was the tiniest sliver of what they were going through. I am still in awe of the tremendous love that fueled them through more trials on every level than I can begin to describe or imagine. To be able to give even a small amount of support was humbling. They are a testament to the power of unwavering love.

I received so much during this time. Not only from Jodi, Timaree, and Caemon, but from new friendships, relationships that deepened, and the experience of spectacular loving kindness that flowed with beauty and force from all directions. People are capable of such extraordinary love and generosity, and it seems we are just waiting for an opportunity to show that.

My spiritual beliefs include the idea that the Universe has a bigger plan, that we are all connected, and that no matter what happens, there is purpose and choice.  Caemon’s illness and death tested me. I was furious when he died. Why did he have to suffer so much and die so young? Why was his incredible potential snuffed out? Why did his parents, who wanted him more than can be measured and did everything to deserve a happy ending, have to endure this grief? It was so incredibly unfair. But in the end, I still believe in a loving Source and a choice made by our souls as part of a much bigger picture than this one life on Earth. It doesn’t make his absence less painful. But I know that Caemon’s soul still shines, that his short life had and continues to have a great impact on so many, and that because of what happened, more people were transformed without ever meeting him than maybe would have been had he lived much longer. This helps give me perspective and some peace.  In spite of how I still feel about this outcome, my love for and trust in something bigger than us remains strong. The incredible courage of his soul to come to Earth, knowing what was in store, tells me he knew it was worth it. Yes, I wish Caemon were still here. I wish I were making him birthday cakes and cream cheese brownies. I wish his moms didn’t have to live with this gaping hole in their hearts. And I also know his life had a purpose that continues to unfold through his soul, his legacy, and through those of us who are better for having been touched by him.

Recently I had a dream about Caemon. I was in the bottom part of a split-level room, and he came over to me. It felt so lovely to hold him. He spoke to me in a child’s voice that gradually became more articulate and mature. While I don’t remember his words, the memory in my body is of wisdom and comfort.

And then he had to go. He climbed up to the level above me and scampered off with a couple of other children. In my dream, I was okay with that.

CarolandCaemon1

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 24: Hope

Today, we share with you the words of another guest blogger, Julie Rottmayer, who was our first contact at BloodSource. Julie introduced us to the world of blood donation, a world of caring, compassionate people who rooted for our son through his treatment and honored him after his passing. Julie shares with us how Caemon’s legacy is at work in blood banking and bone marrow recruitment, and she brings in how he has impacted her personally as well. This is a special post from a person we care for greatly. She and other members at BloodSource helped us find purpose in the early days after Caemon’s passing, and in doing so, contributed so much to our healing. 

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It is such an honor to be asked to contribute to Thirty Days of Caemon. Like others who have written, I too have been profoundly moved by a little boy I’ve never actually met.

I was first introduced to Caemon’s story during my work in donor recruitment at a blood bank here in

Drippy, the BloodSource mascot, covers himself in Crocodile tatoos.

Drippy, the BloodSource mascot, covers himself in Crocodile tatoos.

Northern California. During this period I witnessed the impact Caemon’s illness and legacy had on blood donation, platelet donation, and registration for Be the Match (the national marrow registration database). I’ve had the privilege to partner with Jodi and Timaree on several blood and marrow drives in Caemon’s honor held on the Sonoma State University Campus. Jodi’s and Timaree’s students, SSU sorority sisters, SSU fraternity brothers, colleagues and friends showed up en mass to donate blood and sign up for the national marrow registry. They stood ready to help recruit and inspire others to do the same. They donned the Drippy Mascot outfit and walked campus. I saw many of them walking on Caemon’s Light the Night team. Because of Caemon, countless lives continue to be saved through blood and platelet donations made in his honor. And in the years to come, students that registered with Be the Match will be called to donate bone marrow for life saving transfusions.

Those who work in blood banking love sharing stories of those who received donations and survived. Who doesn’t love a happy ending? But we also are very quick to point out that stories like Caemon’s are equally as important. They hold a sacred place with all of us. If Caemon had not had access to a safe and readily-available blood supply, his moms would have never had a chance to even hope for a cure for their son. I know first-hand that to a cancer patient and his or her family, hope is everything. It keeps you going through the darkest hours. Hope for a cure. Hope for more time. Hope for one last good memory. One last “I love you”. Caemon, and many patients like him, would never have had the chance to make it to the transplant unit—his one chance of becoming cancer-free—if it were not for the generosity of blood donors. As Caemon’s doctors continue to work tirelessly to unravel the mystery of JMML, blood donation and platelet donation will provide lifesaving transfusions to those children holding out hope that they will one day be cured of this horrid disease. Blood donation provides that hope. Knowing there is a match for your child on the national marrow registry—or perhaps several good matches—provides that hope.

One of my greatest honors I had during my time at the blood bank was to meet and develop a relationship with Timaree and Jodi. I treasure them both. His moms have shown immeasurable courage with their repeated willingness to carry Caemon’s legacy forward whenever asked to do so. They share his story and speak to current and potential blood donors about the necessity of blood and plasma donation. They’ve shared Caemon’s story with high school students, college students, and donors throughout Northern California. They inspire people to continue to donate and join the marrow registry. To watch them in action as they recruit is awe-inspiring. Just try to tell Jodi that you don’t want to donate blood because you’re scared of needles! Or you’re concerned that donating marrow would be a little uncomfortable! I dare you.

Personally, Caemon’s story has really touched me in many ways. When I left blood banking, I definitely carried him with me. As a parent, I have learned to be grateful for my children’s health, even in the most frustrating moments. To enjoy every moment. To leave piles of laundry unfolded on the floor and just play. As a worker, I kept Caemon’s picture on my desk and looked at it every day—those beautiful ocean blue eyes reminded me daily why I was there. Personally, Caemon’s ability to face and explore his fears by befriending them has taught me to try to do the same in many aspects of my life.  I’ve thought a lot of why Caemon’s story touched me so profoundly—why, like so many others who have never met him– I seem to keep his legacy so close in my own thoughts. People he came into contact with during his short life were touched so deeply by him. How do those of us who never even met him know the essence of this exquisite child’s character? His soul? His spirit? Timaree and Jodi are so eloquently and fearlessly able to share their son with us that his legacy lives on so powerfully through their words and actions. They make us all want to be better people. To take action. To contribute something—a children’s book, a pint of blood, a two mile Light the Night walk. Fueled by the love for their child, they have shown up and shared his story. There has to be times when this is devastatingly hard. But they do it anyway. As his legacy work continues, and lives are changed—and saved—we should be profoundly grateful for them for being such brave and devoted guardians of their beautiful boy’s legacy.