Lily’s Journey
On April 2019, at the age of 3 1/2 years old, Lily Rose Diaz was diagnosed with stage 4 neuroblastoma—a rare form of childhood cancer that forms in the central nervous system, most commonly found in the adrenal gland. Lily presented no symptoms or signs until it had advanced to late staging. Symptoms Lily presented included fatigue, loss of appetite, fevers, bone pain, and under-eye bruising. Shortly after diagnosis, Lily bravely began her fight, enduring intense cancer treatments like chemotherapy, tumor resection, and radiation.
As a family, we made the tough choice to continue better treatment options in New York City at Memorial Sloan Kettering Cancer Center. We left everything behind and began the hardest fight of all. Not truly knowing what was to come - we did all we could to help give Lily a fighting chance.
In March of 2020, Lily devastatingly relapsed in her brain. Nearly 60 percent of patients with high-risk neuroblastoma relapse. Lily was one of the 60% and part of the 5% of children that relapse in the brain. Shortly after the CNS relapse, Lily continued her brave fight against neuroblastoma. Treatments became more intense as Lily endured a craniotomy, continued radiation to the brain and spine, and more intense chemotherapy.
In July of 2020, Lily suffered a near-death brain hemorrhage caused by the neuroblastoma tumors in her brain. On July 11, 2020, Lily was sent home on hospice with 30 days left to live. Three months passed, and Lily miraculously continued to live! Her fight continued for three more years, with neuroblastoma remaining resistant, leaving us to search for new trials.
Lily’s cancer was relentless. In the span of these three years after the brain relapse, Lily’s cancer continued to progress to her entire body, including her orbital bones, jaw, face, skull, arms, legs, spine, hips, and pelvis—everywhere. As her parents, we had to make decisions no parent should have to make. We watched our beautiful daughter go through the unthinkable.
In April of 2023, Lily’s disease continued to progress, including new tumors in her brain. Lily had outlived four brain hemorrhages throughout her fight with neuroblastoma and CNS relapse. Cancer took so much from our family. Cancer took her ability to walk, run, jump, and live the normal life she deserved. Despite the difficult seasons Lily endured in her fight, and despite all that cancer took from us as a family, Lily never lost her joy. Lily kept living like Lily Rose.
Lily never gave up.
Lily Rose fell into a sudden deep sleep and transitioned to heaven on August 28, 2023 at summers golden hour.
“In every shared smile and laughter, in every silent prayer answered, in every opportunity that comes your way, may Lily’s courage forever inspire you.”
