When there were no more treatment options left for Shane, we made the ultimate decision to carry on his legacy. We decided to donate his tumors to further alveolar rhabdomyosarcoma research. We did this through Dr. Charles Keller at the Children’s Cancer Therapy Development Institute. Currently, CC-TDI is where our research funds are allocated. We assist in their legacy gift program, helped purchase laboratory equipment, as well as an innovative think tank.
Dr. Charles Keller states:
Shane’s Legacy Gift of tissue after life has become a useful tool for rhabdomyosarcoma research, and has even helped a new phase of a clinical trial get started. The lab created a primary cell culture from Shane’s tumor … it grows extraordinarily aggressively and quickly, but the lab team says that makes it useful as an “the ultimate challenge” to find new treatments that slow it down. Many new drugs have been tried, and few have worked. However, there is a bright ray of sunshine: the lab team has found that the breast cancer drug Entinostat does a great job in Shane’s cells to turn off the major mutation, Pax3:Foxo1. The more drug that is given, the more Pax3:Foxo1 goes off. The drug levels that work are comparable to what children are receiving in an active, national phase I clinical trial of entinostat (ADVL1513). What is more heartening is that Shane’s tumors also were directly implanted into a mouse by cc-TDI and The Jackson Laboratory… and when the mouse gets entinostat, the tumors are far more sensitive to chemotherapy — the tumors don’t grow! The results from Shane’s mouse (and 15 other patients’ mice, also mostly from Legacy Gifts) are resulting in a new Phase I-B study of entinostat and entinostat-plus-chemotherapy for children with rhabdomyosarcoma. The reason this is so notable is that most new treatments for rhabdomyosarcoma were developed on mouse models from 1987, 1982 and earlier. Shane’s mouse leads the “new avatar army” of mouse models that show how contemporary patients will respond to newly-proposed treatments. We can’t be more excited to if this new treatment with entinostat plus chemotherapy will benefit other children with rhabdomyosarcoma.
Shane is at the forefront of their mission statement, take a look at www.cc-tdi.org
The proceeds from our Pearl Jam Tailgate were donated to the Dana Farber Cancer Institute for their genetic rhabdomyosarcoma study. Dana Farber Cancer Center holds a special place for us during our journey. We took Shane there for our second opinion appointment. We are forever grateful for their guidance.
CHASE & ELLA’s ANNUAL ALEX’s LEMONADE STAND
When Shane was diagnosed, Chase wanted to host an Alex’s Lemonade Stand down the shore in honor of his brother. He held his first stand in the summer of 2015 after Shane had passed. He along with Ella have hosted a stand every summer at the Ventnor Arts Center in honor and memory of Shane. Chase & Ella have raised over $4,600 in four years hosting his stand. Each year they ask that the money gets delegated to rhabdomyosarcoma research. We are incredibly proud of their determination and achievement that they sought out to do on their own.
SPEAKERS AT MINI-THON EVENTS
Paul is a Penn State University graduate and has been supporting THON since he attended. In March 2015, we were invited to speak at what will be Chase & Ella’s high school, Abington Senior High School. We went with Shane and told our story and explained to the students that their passion and determination to raise awareness for childhood cancer was so very important. We have attended and spoken every year since. We have also talked at Lower Moreland and Spring Grove Mini-THON. We are grateful to share Shane’s story and inspire young individuals to do more to help in advocacy for childhood cancer.
Child Life and Bereavement
When there were no more treatment options left for Shane, his care shifted from oncology to CHOP’s Palliative Care Team. This team consists of doctors, nurses, social workers, and child life specialists. Our child life specialist did an amazing job preparing Chase & Ella for the inevitable. She taught them how to express their feelings in a healthy, constructive way. We made keepsakes with Shane that we will treasure forever. This care for our children continued after Shane’s passing. We wanted to be able to give back and help other families experience this positive, healthy grieving. We have been able to purchase computer and video equipment for the PACT psycho/social team so that other families will be able to create memories too. We also assist families through this team by donating gift cards and toys as needed.
We are determined to further our work in bereavement and be the stepping bridge for families.
We wanted to give back and through CHOP’s PACT team we help assist families with gift cards, toys, and enrollment into our Holiday Gift Drive. Through the Holiday Gift Drive, we are able to purchase all of the wishes on a family’s holiday wish list. Each family member receives at least five presents. We also work with other local charities to assist families during the holiday season.