Like our Francesca, he was diagnosed with ATRT brain cancer as an infant. He spent much of the first two years of his life in the hospital in treatment. But his cancer still came back twice.
With few options left, Vincent’s family decided to try a drug called tazemetostat. An initial clinical trial at Boston Children’s Hospital/Dana-Farber Cancer Institute found this so-called inhibitor, which is FDA-approved for adults, held promise for children with this brain tumor.
More than a year later, Vincent’s scans show no evidence of disease. He spends his time where a toddler should, at home with his family, and has had few side effects from the drug. After years of hard work in physical therapy, he took his first independent steps and is talking (and singing) up a storm. He went trick-or-treating in an incredible Oscar the Grouch costume and recently visited Disney World with his family.
We’re excited to share that the Team Beans Infant Brain Tumor Fund, which you contributed to in the past year, will be helping fund further clinical trials of tazemetostat in children with ATRT.
It’s one of a number of ambitious projects that the brilliant doctors at Dana-Farber are already dedicating the nearly $1.6 million raised by the fund to. One will examine patient brain fluid to try and predict relapse. Another will try to figure out why many cancers resist current treatments. And one particularly close to our hearts is a clinical trial for the ETMR brain cancer, which has few treatment options and took the life of our dear friend Jonah, 5, less than a week ago.
Our family has been blown away by your generosity in the year since our daughter Francesa died. This holiday season, we would be so grateful if you would once again include the Team Beans Infant Brain Tumor Fund in your giving. You can donate through this link. You can also contribute by purchasing a t-shirt or sweatshirt honoring children with cancer through Dec. 2.
The doctors that you’ve backed through your contributions tell us the funding is already making a huge difference. Let’s keep that momentum going. Each clinical trial and research effort gets us closer to better treatments and to a world where fewer families spend the holidays in the hospital or mourning their beautiful children.
Andrew and Rachel