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.