On March 1, 2016, my daughter, Juliet Angelica, died from rhabdomyosarcoma. Less than 15 months after she began to show symptoms, she ran out of time, she ran out of options, and our family was left with a gaping, unfillable hole in our lives. I could eulogize the beautiful girl and amazing spirit that she was to everyone who met her until my voice ran ragged, but it does little to alter the awful, unfathomable simplicity of her being gone. After months and months of being able to care for your own child is taken away from you, one aspect of a parent’s grief is no longer being able to care for that child—no matter how awful the trials. In my case, a parent aches and grieves and seeks to replace this care with the chance to do something, for some child, somewhere. As I realized just how much the institutional odds were stacked against my daughter, how messed up the focus of not only American but essentially global cancer research is, I felt there was an opportunity to care for a lot of children and their families who would hopefully either never have to face any of this, or would at least get a better shot at a happy ending.
At the time Juju was diagnosed, we had just arrived and were settling into living near Frankfurt, Germany. While living overseas through all of this introduced other undesired complexities, whenever she was well enough, we could escape and drive out into the countryside to explore castles, aged towns and villages, we played in unique parks, scootered and rode bikes over hill and dale, ordered ice cream (Spaghettieis!) at cafes, and really just did whatever we could do to live fully. And even when she wasn’t well enough to go outside, she still loved to sing and dance to her beloved muse, Taylor Swift, dreamed of becoming a singer, and she kept learning, kept pushing for her own needs and happiness and she never ever gave up fighting. In her journey, Juju faced enormous adversity with such grace and courage and always kept her spriteliness. She found her own way, on her terms, and was brave beyond her years, in a way that holds my deepest admiration and love.
And so we are inspired to undertake our own journey, one that is both hard and requires fighting for, but one in which we give thanks for the experience of a day spent with fullness of breath. Juliet inspires us, in the way that she fearlessly tackled cathedral spires, castle towers, and every form of mountain she had to climb during her treatment. We hope only to honor her with a Journey that would make her smile, make her laugh, frequently chiding, ‘Daddy is ridiculous,’ as I sought to amuse her, but at the same time honor her fortitude and her grace.
It is with love in our hearts that we make this Journey for Juliet, and for all children who have known, and who still may know the terrible shadow on life that is cancer. We miss you and love you so much, Juju!