You do not get to choose the events that come your way nor the sorrows that interrupt your life. They will likely be a surprise to you, catching you off guard and unprepared. You may hold your head in your hands and lament your weak condition and wonder what you ought to do. To suffer, that is common to all. To suffer and still keep your composure, your faith, and your smile, that is remarkable. Pain will change you more profoundly that success or good fortune. Suffering shapes your perception of life, your values and priorities, and your goals and dreams. Your pain is changing you.
Lea was a thoughtful, joyful and creative spark of a girl who loved nature, art and painting the world with her colorful spirit, jubilant skip, joyful laugh and bright artwork. Lea died from DIPG on May 20, 2018 at the age of six just nine months after being diagnosed with DIPG.
On Wednesday, August 10, 2017 the unimaginable became a reality when our six year old daughter Lea was diagnosed with DIPG, a highly aggressive and difficult to treat brain tumor for which there currently is no cure.
Approximately 300 children are diagnosed with DIPGs each year, usually between the ages of 5 and 9.
I was blessed to be Lea’s mom and this the story I will tell of our family trying to finding joy, strength and faith in spite of tragedy.
August 10, 2017- We bring Lea into the YALE ER after she is unable to walk on her own. Her balance and coronation are remarkably impaired overnight. The team performs an MRI and finds an inoperable tumor in the pons of her brain.
August 11, 2017- We have a biopsy done of Lea’s brain at YALE.
August 16, 2017- DIPG diagnosis confirmed
August 31, 2017- Lea starts 30 treatments of radiation at YALE.
October 5, 2017- Lea finishes radiation
November 8, 2017- Lea starts an immunotherapy clinical trial at Dana Farber in Boston, MA.
May 10, 2018- Lea dies nine months after diagnosis, and 15 days before her seventh birthday.