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.

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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