This cool photography group out of Tampa has launched something they call the Unicorn Initiative, giving fairytale photos to kids with cancer. I wanted to share this photo we posted on Facebook, along with the caption we had.
Robyn and I met Sofia and her family last year, when she was diagnosed with stage 4 neuroblastoma (nb), the same type of cancer Ezra had. Today, Sofia is beating cancer.
Sofia has a fiery stare and the proud stance of a warrior. Her parents often quote, “and though she be but little, she is fierce.”
In 2011, when we started funding clinical trials, months after Ezra had relapsed and died, the research group we help to fund (the NMTRC) was just starting the first DFMO trial - nothing more yet than a question and hope. Our friend Jude, Lily-Mae’s mom, calls DFMO “hope in a bottle.” Lily-Mae is two years cancer free now. Almost 6 years into clinical trials, our hope is DFMO is stopping kids from relapsing with neuroblastoma. This would be a huge win - we can get most kids with nb to remission, but over half of those relapse, and there is no current cure for relapsed nb. The day this photo was taken, Sofia’s family signed the consent form to start the DFMO trial, at the same hospital Ezra was treated at - All Children’s Hospital.
In 2009, when Ezra was diagnosed, neuroblastoma treatment and research was much different. In these 6 years, we have made huge strides in how we Beat NB. I am constantly broken and built up simultaneously, crushed to know our son got this stupid cancer at the wrong time. Still - I stand proud with tears in my eyes when I echo Sofia’s parents, now our friends, in saying CANCER MESSED WITH THE WRONG FAMILIES. I could not be more proud to know our kids’ names will be attached to a promise that WE CAN BEAT THIS. It’s happening today. And we’re only getting better. We’re not there yet, and we still need help. There’s a lot of us, working together. And the stories are changing.