Lucy's Story
On May 19, 2006 we were preparing for a large family celebration in our home the following day. Relatives were arriving at Logan Airport, rental tables and tablecloths filled our garage and the phone was ringing constantly - excitement was in the air. We were in a joyful and celebratory state of mind.
Little did we know that a routine eye exam later that morning would lead to a 10-hour ordeal ending in the MRI Unit of Children's Hospital Boston. We barely heard anything beyond, "Lucy has a brain tumor on the optic nerve behind her right eye" and only vaguely remember the team from Dana Farber Cancer Institute arriving hours later to discuss treatment options.
That day our world changed forever in the most profound ways. Never again would we feel completely safe, never again would we take our health and the health of our children for granted, never again would a trip to the doctor feel routine.
Lucy's diagnosis, Pediatric Low Grade Astrocytoma (PLGA), is the most common type of brain tumor diagnosed in children. Yet there is very little known about it because virtually nothing has been done to cure - or even significantly improve treatment of - PLGA brain tumors.
Today we are at the place physicians refer to as "watchful waiting." Lucy's tumor has been stable since her diagnosis, but we have no way of knowing how long this will last. She is being closely monitored through visual exams and MRIs by her team from Children's in Boston, Children's Hospital of Philadelphia and Dana Farber Cancer Institute.
Lucy approaches these visits, sadly, like a veteran. She knows what is in store and she knows that it is not fun but true to her easy-going nature she grins and bares it. She's developed trusting and comfortable relationships with her doctors, nurses and other care providers and, in her own way, continues to make this part of her routine.
We painfully endure this "watchful waiting" because the chemotherapy will be most effective when her tumor is growing. And, since we will likely have only one shot at using each chemotherapy regimen, we want to ensure we are using them at the time they are most likely to be effective. So we wait and hope with thanks for what has been so far and concern about what might lie ahead.
But waiting for the other shoe to drop is not our style. We can't accept an uncertain fate for Lucy and our family and are driven by the feeling that if there is something we can do to better secure a happy and healthy future for her, we must. What parents wouldn't do the same for their kid?
PLGA Foundation Geared Up For Kids Ride
The Pediatric Low Grade Astrocytoma (PLGA) Foundation is the only non-profit organization dedicated to providing hope to children, parents, and families fighting PLGA brain tumors.