My son, Jacob, was a beautiful, happy, kind, funny, serious, inquisitive, articulate, contemplative, exuberant, talkative boy. He loved all sports, playing keyboards and vocals in rock bands, spending time with his little brother, Ben. He wanted to be a good kid. When Jacob was 8, he was diagnosed with medulloblastoma. Jacob’s disease was unresponsive to treatment and burdened him with terrible impairments. Jacob struggled with brain cancer for two years. Finally, on January 16, 2009, at age 10, he lost that struggle.One step we took that has brought us great comfort was to request an autopsy tissue donation. We hope that through this donation, we might one day prevent another child from suffering Jacob’s fate. Tumor tissue is scarce and much research for pediatric brain cancer is delayed or never undertaken because there isn’t enough tissue available. Tissue donation is one of the few positive steps we can take during this trying time. And it is a contribution that only we, the parents of children with brain cancer, can make.
Jacob’s tissue was sent to several pediatric cancer researchers. We are happy to report that even this one step has promoted scientific understanding of pediatric brain cancer. One research team reported a new observation as a result of a genetic analysis of Jacob’s primary and metastasized tumor tissue. Another research team was successful in developing the first xenograft autopsy tissue mouse model from autopsy materials.
Kids v Cancer is working to make autopsy tissue donation more common, so that researchers can obtain the tissue they desperately need. We invite you to use this website to learn more about autopsy tissue donation.