Progress, unfortunately is sometimes forged from the fires of pain mixed with strength, courage, passion and determination. Nancy Goodman has such a story. Nancy made a donation that no parent ever wants to give.
“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.”
Today, the lightning fast technology coming on board in genomic research for brain cancer is being severely slowed down due to lack of tissue.
So that researchers can obtain the tissue they desperately need, Nancy founded KidsVCancer (www.kidsvcancer.org) and is working to make autopsy tissue donations more common. If you are a doctor, parent or caregiver and would like more information, please contact KidsVCancer and they can assist you. If your organization would like to help Nancy promote tissue donations, KidsVCancer would love to talk to you.
Five year old Dylan Jewett was diagnosed with a diffuse intrinsic pontine glioma (DIPG) on November 15, 2008, Danah, his mother says of her decision, “I know the decision to donate autopsy brain-tumor tissue is the hardest decision a parent will ever have to make. No parent should have to make this choice. But, if your child loses a battle with brain cancer here on earth, please consider donating his or her tumor for research. The donation will be used to save another child’s life. As awful as it is for us to have to say goodbye to our beloved child, at least we can help another child be healed through the decision to donate.”