No Good Days

On September 7, 2023 we had our last good day.

On September 8, 2023 Juliette was diagnosed with aggressive, incurable brain cancer.

We have been holding our breath for two years.

We are fortunate to have had a lot of good moments since then - fortunate because the skill of the Boston Children’s Hospital neurosurgery team has allowed Juliette to emerge from two brain surgeries without any physical deficits. Their exceptional care has enabled Juliette to enjoy so many incredible life experiences: two birthdays, a dance recital, weddings in Portugal and New York, a handful of New England road trips, and her favorite holidays: Halloween and Christmas.

But every night after we read a bedtime book and tuck the kids in, the exhaustion of pretending sets in. The cheery mask we wear during the day to protect Juliette and Quinn comes off. At night we feel the erosion of our life. We sense its slow inevitability. There is no relaxation when the only focus is survival. There is no excitement when the future only carries uncertainty. We used to wonder if Juliette would get her first job at the local ice cream shop, now we wonder how long we’ll live here.

Over the last two years we have experienced a lifetime of heartbreak, and there’s more heartbreak on the horizon.