Meet Shane: The Little Boy Who Started a Clinical Trial

“We noticed the lump in Shane’s groin when he was 8 months old. We thought it was a hernia. Our paediatrician did too, so we were referred to The Children’s Hospital of Philadelphia. We were worried but were soon to learn that worry has much deeper levels. The fear in the eyes of the doctor in general surgery is something we will never forget. For two weeks we were shuffled from Urology to Infectious Diseases and finally to Oncology. A biopsy revealed alveolar rhabdomyosarcoma, an aggressive soft tissue sarcoma.

That day was March 28, 2014. The day our world exploded. Shane’s diagnosis was terminal. We felt helpless. Crippled. Utterly shattered. We had two options. To do nothing which would have given us weeks, or chemotherapy which gave us hope. We chose chemotherapy. We lived with the hope that he was going to beat this. Hope was our fuel for survival. Many thoughts and prayers were sent our way, praying for a miracle. Our miracle was the quality of life Shane lived despite the harshness of the decades old chemotherapy that was infused into his tiny body. Chemotherapy that was designed for adults not babies. The tears we cried were nothing in comparison to the happiness and joy Shane brought us.

Less than a year after Shane’s diagnosis the cancer was spreading aggressively. We were told there were no more options. Shane took his last breath on March 30, 2015. Our precious little boy was only 19 months old.

Despite the depth of trauma we were enduring during the final weeks of Shane’s life we decided to donate his tumors to support research into alveolar rhabdomyosarcoma at cc-TDI. We were going to carry on his legacy of determination. We knew that by supporting efforts to unlock the molecular secrets of alveolar rhabdomyosarcoma hidden within Shane’s tumor tissue we could provide the foundation for another family’s hope and healing for our own. It was this hope and belief in science that drove us forward.

The cc-TDI lab created a primary cell culture from Shane’s tumor. As it grows extraordinarily quickly and aggressively it is an ultimate challenge to find new treatments to slow it down. It has become an incredibly useful research tool. Many drugs have been tried and few have worked. A ray of possibility shone through when the lab team found that the breast cancer drug Entinostat turned off the Pax3:Foxo1 mutation in Shane’s tumor cells. A particularly exciting advance occurred when Shane’s tumors were directly implanted into a mouse by cc-TDI and The Jackson Laboratory. When the mouse received Entinostat, the tumors stopped growing! The results from Shane’s mouse (and 15 other patients’ mice, also mostly from Legacy Gifts) have resulted in a Phase I-B study of Entinostat and Entinostat-plus-chemotherapy for children with rhabdomyosarcoma. This is amazing because 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 today’s patients will respond to newly proposed treatments.

As a parent, you feel helpless when your child is fighting for their life. While our story did not end the way we wanted it to, we are able to continue Shane’s fight and legacy through cc-TDI. The guidance and compassion we received from Dr. Keller when Shane was with us and the continued support from cc-TDIhim after Shane’s death has been inspiring.” (Michele Metzgar – Shane’s Mom)

Shane’s Future Days was created to honor Shane’s legacy. The fundraising efforts of this charity are directed entirely towards cc-TDI’s research needs on alveolar rhabdomyosarcoma and other rare childhood cancers. While COVID-19 has prevented Shane’s Future Days from undertaking their annual Celebration of Life event to honor Shane we are deeply grateful for their ongoing partnership and donation of $5000 this year.

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