Journal entry by Vicki Bunke
Borrowing a term from baseball, last weekend, The Amazing Grace Swim Across America Tour embarked on a Swim Across America “double header.” In other words, we participated in an open water Swim Across America event on Saturday morning and again on Sunday morning.
On Saturday morning, we were in Glen Cove, NY at the Swim Across America – Sound to Cove event and then on Sunday, we were in Greenwich, CT at the Swim Across America – Fairfield County event. As usual, I met so many incredible people, two of which I will tell you more about.
Throughout the weekend, I was reminded of something I have said to Dr. Wasilewski on several occasions. Following Grace’s first relapse and at one of her admissions during her clinical trial treatment, I said to Dr. Wasilewski, “The dinosaurs must be laughing at us.” Later in February or March of 2018 (I can’t remember) as we were doing our very best to care for Grace at the end of her life, I said to Dr. Wasilewski, “Those dinosaurs are really laughing at us now.”
Why would I say such a crazy thing?
I said it because osteosarcoma, the disease that took Grace’s life, is the oldest known form of cancer. Osteosarcoma has been found in the bones of dinosaurs. Dinosaurs.
Which might explain why Grace told everyone at The Rally Foundation Benefit Bash in November 2017 that she was going to die of a disease whose treatment had not changed in 30 years.
Which might also explain how I met two incredible women on this “double header” Swim Across America weekend. In Glen Cove, I met Ellen Leondis. Her daughter Stacey was diagnosed with osteosarcoma when she was 16 years old and passed away at the young age of 23. During those seven years, she started the FOSTER Foundation (Fighting Osteo Sarcoma Through Everyday Research), graduated high school, graduated Yale University and was accepted to Mount Sinai medical school.
In Fairfield County, I met Cristy Fraser. In 2017, her son Julian Fraser died after he fought a tough 11-month battle with osteosarcoma. Julian was an All-American swimmer and water polo player at Greenwich High School and a standout player on the Santa Clara University Water Polo Team when he was diagnosed with osteosarcoma at age 19. He was loved by all. Julian was only 20 years old when he died.
At the Fairfield County Swim Across America event, I reminded everyone of something that bothered Grace. When Grace learned that she was going to die from her osteosarcoma disease, she was shocked to learn something else important. She was stunned that the grand sum total of the progress researchers and clinicians have made in treating osteosarcoma over the past 30 years is exactly equal to zero.
That sounds pretty bleak and hopeless, doesn’t it? But as Grace taught all of us, it is when life is darkest and bleakest that we need hope the most. And, our family and the families of Stacey and Julian have found that by joining the Swim Across America community, it has been possible to create hope based in reality while simultaneously imagining a better future. A future in which young people like Grace and Stacey and Julian survive osteosarcoma and thrive. A future in which beautiful young people like the three of them are alive and well.
So, how do we stop the dinosaurs from laughing?
We stop the dinosaurs from laughing by choosing to make a difference.
We stop the dinosaurs from laughing by not giving up.
We stop the dinosaurs from laughing by choosing to make waves to fight cancer.
We stop the dinosaurs from laughing by choosing to have hope.
Don’t let us get to 40 years. Don’t let the dinosaurs have the last laugh.
Here is a glimpse into last week’s double header: The Amazing Grace Tour – Glen Cove, Greenwich, Boston
I’m gonna live
Like tomorrow never comes
There’s no end in sight
Tonight we black out the sun
Better hold on tight
Before you know it’s gone
And live like tomorrow never comes
(Zac Brown Band)