Tag Archives: JMML

four augusts

It’s hard to go much of anywhere on social media this month without seeing parents rejoicing at the end of summer and the start of a new school year–that time of year when parents get more freedom and kids are the responsibility of some other adult for at least a few hours a day. Advertisements on television, mom blogs, displays in stores all point to the same euphoric feeling of relief that parents have this time of year, counting down the days until school starts. The culminating event of all this build-up is the iconic first-day of school photo, kids all decked out in their new-school-year finery captioned by their parents’ lament: “I wish she would just stop growing.” August on social media is a minefield for the bereaved parent.

All that festive back-to-school clamor hurts for fairly obvious reasons, but for me personally, it also heralds the beginning of the darker months, the time when, four years ago, all of the outside world became a jumble of voices and lights, and I focused everything I had on saving my son, only to find that these were the last months I would share with him.

My wife’s birthday was a week ago. It was a lovely day of celebrating, but that day too is marred by the beginning of the end. Four years ago on her birthday, we had our last family photos taken–the iconic photos that have become Caemon the Legend, Caemon the Hero, Caemon, the Beautiful Boy Who Had Cancer, Caemon the Poster Child for JMML. Exactly one week following that day, August 21st, was D-Day: the anniversary of our initiation into the cancer club.

In fact, four years ago at this very moment,  Jodi and I were sitting in the hallway of the children’s oncology unit at UCSF, talking to a hematology fellow who would confirm that our son had some form of leukemia. I remember shaking so hard I could hardly sign the consent forms for the studies he was entering. It was just the beginning.

August is the keeper of so many beginnings. It holds Caemon’s first day of preschool, his first camping trip in the redwoods, but after August 21st, it held his first stay in the PICU, his first chemo, his first oncologist. After February, this is the month I dread the most. One might think, four years on now, that I should be getting over the diagnosis, that I should learn to move on, that I should place all my focus on my healthy baby girl and teaching and new hopes and dreams and somehow forget. But how can I when it’s August?

It’s August, and before I know it it will be September and his birthday, October and November and the memories of the hospital, December and his bone marrow transplant, January and his relapse, and February, the end–the end of my beautiful Caemon.

It’s August, and I don’t have my boy who should be going to school, and I am not rejoicing. It’s August, and my son did stop growing. August is just too heavy to forget.

The coming months are the hard ones for me. They bring with them so many difficult memories, and while my daughter and my imaginings of her future do certainly provide a counterweight–even respite–to some of that pain, this time of year will forever be changed for me. There will never be a back-to-school season when I don’t wonder what a seven-year-old or thirteen-year-old or college freshman Caemon might have been like. There will never be a Halloween when I don’t think of his return to the hospital in his nurse costume or a Winter Solstice when I don’t think of his transplant.

And so, with August 21st, I enter the season of missing my son more poignantly. Another year has passed since the beginning of his end, four years of Augusts without him.

 

Thirty Days of Caemon–Day 23: C is for Community

CaemonCroc2Before Caemon’s diagnosis, our little family’s community circle was fairly small. We had close family, a few new friends and colleagues, and a number of friends hours away. As fairly recent transplants to our city, we were still finding our tribe. When Caemon’s illness hit and we learned how very sick he was, we were certain that it was going to sink us. We had health insurance, but this meant Jodi had to continue working, and it wasn’t going to cover everything. We didn’t know how we would keep our residence, how we would afford traveling to and from the city, eating out for every meal, managing all the daily expenses of living in the hospital. But more than that, we didn’t know how we would make it through emotionally. How does one handle day after day in the hospital, the very lonely road of being a parent of a child with cancer?

Within just a day or two of his diagnosis, all of these uncertainties were put to rest.

On the first day of Caemon’s diagnosis, my sister started us a Caring Bridge site, and our friend Carol set up our Facebook presence “Caring for Caemon.” We shared the news with family, with friends from our moms’ group, even with my mom blogger community, and suddenly offers for help and messages of support were overflowing our inboxes and phones. A blogger friend took over my blog for a time, leaving announcements there. She communicated with my sister who communicated with Carol, and they all coordinated to set up fundraising and news dissemination and support. Our moms’ group made up a schedule for caring for our house and cats, and just like that, we had little to worry about but our son.

And for nearly six months, that community support just kept growing. Our neighbors kept our yard up. The circle of moms did our laundry, cleaned our house, cared for our cats. Blogger friends started a t-shirt fundraiser. Carol put together a wine country gift basket raffle. The moms organized a huge event, raising money and celebrating us. Donations came in daily to help us stay afloat such that I was able to take leave from work. Messages of support from family, friends, and strangers popped up in our inboxes on Facebook. A few people set up regular visits to keep us company, to give us respite. An engine company from the San Francisco Fire Department, one of whom is a close friend of my brother’s, came to see Caemon with gifts and donations and words of encouragement. Our local fire department dropped off presents, even brought their engines over for Caemon’s third—and last—birthday celebration.

To list every kind thing that happened to us just in that first ten days of learning our son had a life-threatening disease could take me days. To list the acts of kindness and compassion that came in the coming months, even in the last two years, would take weeks, months. The picture is clear though: from our son’s illness, a community of compassion sprung up, and it grew, and it grew.

To say that this has been humbling is an understatement. I never imagined that over a thousand people would subscribe to a blog about my son, that over two thousand people would follow a Facebook page dedicated to him. And I never imagined what those people—most of whom I’ve never met—might do. From buying t-shirts and making donations to help us out to posting photographs of appliances and lit candles and sunrises to keep our spirits up, sending words of hope and inspiration, and later, when Caemon died, message after message after message of heartbreak and condolence. Members of our community helped our Leukemia and Lymphoma Society Light the Night team raise thousands of dollars and continue to donate to our St. Baldrick’s fundraising efforts; they have donated hundreds of books to our C is for Crocodile book drive; they have given blood and signed up to be bone marrow donors. At least one member of our community has become a bone marrow donor. Our community raised money for a bench for Caemon, and that same community sends photos of their children visiting the bench. This community wears their “Taking a CHOMP out of leukemia” shirts with pride and meet one another in unexpected places—as far away as Brooklyn.

And our community has come together to help other families fighting the battle with pediatric cancer, making donations, offering support, spreading compassion.

And do you know, our community continues to grow? New people join the Facebook page every week. New people follow the blog every day—people who learn of Caemon’s story and go on to think a little differently about their own lives and what they bring to the world, people who remember our golden-haired boy and keep his legacy alive in so many ways.

This community with its remarkable wingspan has held our family up during the most difficult time in our lives, and it just continues to give and give and give. For our little boy with his tight circle of friends and family to draw thousands of people together for good is nothing short of beautiful, and a simple “thank you” will never be enough to express the gratitude we feel for all of you who are the living, breathing envoys of Caemon’s legacy.

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 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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in my mind, we ran away

A year ago today, we woke up in our home as a family one last time. We got into the car together one last time, and we drove to UCSF with Caemon one last time. He was being admitted to the Bone Marrow Transplant Service and would begin his chemo conditioning regimen at 9pm. Before that, he had hours of tests and a fairly miserable scrub-down with a soap containing chlorhexidine, meant to remove as many bugs and outside germs as possible from his skin. His room from then on would be a clean room, one for which we would have to scrub in any time we left the hospital and returned.

Caemon was so cooperative that day with so many things. He brought his medical supply tacklebox, having left his medical supplies at home (even these had to be fresh). He had a chest x-ray and sat so very still, and while that dreadful bath had him protesting wildly, he happily changed into comfy clothes and took a nap with Jodi on the bed while I decorated his new room with trees.

But I can tell you that in my mind that morning, I wasn’t driving him to UCSF. When I woke up early, and he was still sleeping, I imagined staying home with him forever. I dreaded what was next, knowing the transplant itself could kill him. Every cell in my body wanted to hold tight to my little family snuggled up in our big bed and just never go. I wanted to see his hair grow back, watch him turn the lights on and off on our Christmas tree, dance with him free of tubes and hospital beds and worries about platelets. We had spent the last three days baking his favorite pumpkin muffins, going out at night to see Christmas lights on houses (in fact, one we visited all three nights we were home), lighting fires in our little pellet stove, and simply being a family with our own agenda, our own rules, our own space. If Caemon wanted to eat nothing but tuna sandwiches for an entire day, that was what he had. If we wanted to stay in our pajamas all day long, we did. We made messes, cleaned them up, hugged and danced and snuggled and played and read. It was bliss, and none of us wanted to leave it. In those moments, with our son the closest to leukemia-free he had been in who knows how long, it almost seemed possible to just forget about the hospital and just take our lives back.

But it wouldn’t be possible without a transplant. We all knew that. We all knew the leukemia would return with a vengeance in no time if we didn’t go through with it, but the instinct to go anywhere but that hospital was strong in me that day, and I fought it over and over again as we packaged all of Caemon’s clothes in giant ziplock bags, placed his toys in sealed plastic tubs, packed up our own suitcases full of hospital mom clothes, and drove to San Francisco.

That night, after the tests and the bath and after “Sad-Sad Boingy Tube” got hooked back up to the IV pole, and after Caemon and Mama had a nap, and I decorated the room with trees and lights and as much magic as I could muster, we sat together in his room, and we gave Caemon what he affectionately called his special BMT present: a little Christmas carousel that lit up and played music, something he had admired countless times the year before both in a store and in a book we had.  Caemon loved carousels, so to have one of his one was pretty fabulous. He snuggled up by himself in his bed, turned it on, and lost himself in it. For nearly an hour, my son gazed at the lights and mirrors, listened to the music, and watched the little animals spin around and around. When the little bears riding one of the horses would come around, he would kiss his fingers and gently touch them. He did this over and over, speaking softly to the bears. He was a little boy, mesmerized by a holiday toy, and I found myself transfixed by the beauty of the moment, yet saddened too, for beyond the innocent smile and wonder, there was something else in my son’s eyes–a sort of resolve that came with being back in the hospital, hooked back up to tubes, submitting to treatments. To see a sort of knowing wash over him, to see him visibly coming to terms with leaving home and living in the hospital again broke my heart.

Thinking back to all of that now is so hard because I know what he was about to endure, and I wonder if he was anxious about it. I wonder if he had any idea what was to come. I don’t know. I know that it was scary for all of us and that we maintained more hope than I ever imagined could be mustered, that we did everything we possibly could to save our son. A year ago today began the greatest fight of our lives, and while I know I wouldn’t have changed anything, I still sometimes wish we could have just stayed home, lit a fire, and snuggled up on the sofa with a big stack of books and our beautiful, beautiful boy.

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the gravity of grief

In the days and weeks following Caemon’s death, I found myself wanting to pick up heavy, bulky things. I needed to feel the resistance of weight in my arms. For three and a half years, I had been building my strength as my son grew from his sturdy nine pound eleven ounce birth weight  to the thirty or so pounds he was in his final year of life. As a mom of a young child, I became accustomed to having this boy in my physical presence at nearly all times, his weight in my arms. Jodi and I were fond of being close to our son, and he felt most at ease in our arms, so we kept him close throughout his early years knowing that soon he would be taking steps away from us as he went to school and began gaining more and more autonomy. For those first few years, though, that physical proximity of Caemon to me or Caemon to Jodi was a fact of life that we cherished.

In the hospital, we also stayed close. From his first night there, we would lie in his bed offering comfort and familiarity in a place where everything seemed scary and foreign. I think we took comfort there too, for lying in his bed meant being the one thing that meant the most: being Caemon’s parents. When we found out Caemon relapsed, and everyone around us was telling us that the end of his life was near, we got the big bariatric bed so that we could all lie in it together, so that we could stay as physically close to Caemon as possible. He insisted at that point, even as miserable as he felt most of the time, that someone be in his bed at all times. Usually this meant me or Jodi, but sometimes it meant he would ask a nurse to lie down with him (for one favorite nurse visiting on her day off, he actually kicked me out of the bed so that she could lie next to him). He wanted the closeness with everyone, and we all obliged because if we could offer this beautiful boy of ours some comfort we would do anything we could. In those final days, we couldn’t hold him, for he was in too much pain, but we kept him so very, very close.

In those first few weeks and months after Caemon died, I physically felt like I was missing something. I was missing a good thirty pounds that I needed to heft. I was missing the closeness a little boy shares with his mommy too: skinny arms draped around my neck, a sleepy head resting on my shoulder, soft little hands playing with own hands or moles or—one of Caemon’s favorites—my collarbones. In those early months, I could close my eyes and instantly feel the weight of him.

It’s harder to access that sensation now. After nearly ten months without touching or holding my son, sometimes I have to reach further to remember that feeling of carrying his weight, and there is a new grief in that. I am finding my arms that were once strong enough to carry around thirty pounds of boy as well as all of our gear, maybe even a cat, are weakening such that I don’t want to heft heavy objects anymore. I find myself surprised when I strain to pick up something that was once so easy, saddened that such resistance is so unfamiliar now.

The sort of strength training we undergo as parents is the best sort. Our muscles adapt slowly to our growing children so that we become stronger as their weight becomes greater. It was true in the hospital too that the more burden we were offered, the more we carried and even normalized because what else is a parent to do but carry the weight of the child, and when necessary, the weight of the child’s illness, the weight of circumstance and need and fear and pain?

In Jonathan Safran Foer’s book Extremely Loud and Incredibly Close, the central character, a little boy who has lost his father, frequently describes his grief as “heavy boots,” and this is one of the most apt descriptions of profound grief that I have found. There is an immense weight to grief, one that makes the bereaved feel the gravitational pull is somehow magnified with the loss of a person. Sometimes it feels like a lead apron was somehow sewn into me, that this new burden is forever part of me. But even that I am learning to carry, some days with a bit of grace and others in a lumbering, faltering, fashion that reveals just how heavy this weight really is. But this is the weight I have left; it is my duty to carry it with me, just as it was my duty as Caemon’s mother to carry him. This lead apron, my own heavy boots, they make up the 3-G force of loving my boy and losing him.

a letter to my son on his fourth birthday

Dear Caemon,

Four years ago today, I finally got to meet you. For months, you had been rolling around in my belly, sticking your foot as far out as you could (I imagine you were a bit cramped in there, big boy that you were), but finally, on September 5th, just four days after my own birthday, I received the best gift of my life: my beautiful Caemon.

Every month after you were born, I wrote you a letter about all the things you had been doing that month. Some months were pretty eventful, like the one where you learned to sit up or say “mama,” and some months were mostly love letters, telling you just how much love you had brought to me and your mama.  I loved writing those letters, reflecting on who you were becoming, reveling in all the joy you had brought to our lives.

This year, your fourth year, was your last year on this earth, sweet boy, your last year in our arms. I remember last September 5th well. You had gone to the hospital for a platelet transfusion the night before, and in the morning, we got up and went to your favorite place: the Exploratorium. You were tired that day, but you were overjoyed to spend time with your cousin, your aunt, and your moms. I remember soaking in every moment of your birthday, loving that we could be out in the world together. Earlier in the week for your birthday party with the whole family, the local firefighters brought a couple of their engines to our street so that you and your cousins could play on them. Do you remember, Caemon, how the fireman on the medic truck let you lower and raise the ladder? Do you remember how hard you laughed every time it went, THUNK! Afterward, you would tell the story and hit me so hard as you said, THUNK! I didn’t mind; you just wanted to recreate that sensation. You loved that smaller engine with all the medical supplies. You had just started learning about them. We were all fairly certain that one day you would practice medicine one way or another. But what am I saying? You already did.

This year brought us a Caemon who was so very sick, a boy who had to stay in bed, a boy who had to have pokes, who had to go into surgery (the warm room is what you called the OR), who had to be hooked up for ten-day-long chemo infusions, and who had a bone marrow transplant. You had to endure so much, and when I find myself trying to imagine going through the same, it terrifies me. But you did it with such grace, my son. You laughed, and you loved, and you made friends with your fears. You cradled your syringe pumps, made friends with your “sad, sad boingy tubes,” and even scolded your IV pole (“Stop, staring at me, Beeper!”). You showed your doctors and nurses and social workers and dietitians and child life specialists and book buddies and anyone else who came in the room just how brave a person can be when faced with countless medical procedures. You showed them how to play in the face of fear, how to laugh, how to read a good book, how to take on a new name when you don’t feel like yourself, and how to always, always accept a hug from a handsome blue-eyed boy.

And you taught me and your mama, Caemon. You taught us things about ourselves, about just how brave we could be, how we could do anything if it meant saving you, and you taught us that enough love can get a family through just about anything. You danced with us, read with us, made crafts with us, raced with us down the hospital hallways, and you held us in your arms as though you were a big man there to comfort his moms. You hugged me and patted me on the back when I was sad, telling me it was okay, that you had me. You told your mama that the two of you would get through the night together. You loved us as big as you could and we loved you right back.

We started to talk about the big party we would throw you for your fourth birthday, where we would invite all your friends from the hospital and all your friends and family from home, and we would celebrate. We would blow up water balloons, and you would throw them at the cats (that’s another thing you did last year), and you would have as much ice cream as you wanted, and we would listen to your favorite music and dance and dance and dance. We would celebrate being leukemia-free.

I remember a few weeks after your bone marrow infusion, when you started feeling a little better, enough to do some eating, and I said, “It seems like you’re feeling better, Caemon. Do you feel like you’re getting better?” You nodded and smiled. But a week or so later, after your relapse, after you started feeling really miserable, I would assure you that it would be okay, that you would get better. Every time, you would shake your head no. You knew then you weren’t going to be here much longer. You kept us in your bed with you as much as you could, and we stayed because we didn’t want to miss one more moment with our precious boy.

We didn’t get to throw you that fourth birthday party, not the one we talked about. Today, we’re throwing a different kind of party instead, one that you would absolutely love. You see, today, I went teaching with mama. I’m sitting at her school, in her very cool office with the little fridge you liked so much. In a few moments, I’m going to go hang out with people who have a whole bunch of medical supplies: they have blood pokers and different colors of Coban. They have tubing and alcohol swabs and syringes and vials for labs. Lots of people are going to come and get poked and give their blood for kids like you. They’re going to help save kids’ lives so that they can celebrate their fourth and fifth and eighth and fiftieth birthdays. I know you would approve. I wish you could be here to show them how to hook up the tubes, how to hold still when the poker goes in, how to make friends with all the machines.

But mostly, I’m feeling a little selfish. I really just wish you were here so that I could hold you in my arms, kiss your whole face, see that brilliant smile, hear that infectious giggle, and feel the most wonderful feeling in the world again, the feeling I learned about four years ago today: the feeling of being your mommy. I love you more than the ocean and the moon and the stars. I will miss you for the rest of my life.

Happy birthday, my love, my light, my beautiful Caemon.

Love,

Mommy