Kids v Cancer promotes donations of pediatric autopsied brain tumor tissue by reaching out to both physicians and parents with educational programs, logistical information, research guidance and emotional support.
OPEN LETTER TO PARENTS OF CHILDREN WITH TERMINAL BRAIN CANCER
Dear parent of a child with brain cancer,
My son, Jacob, struggled with brain cancer for two years. Finally, he lost that struggle.
One step we took that has brought us great comfort was to request a research autopsy and tumor tissue donation. We hope that through this donation, we might one day prevent another child from suffering Jacob's fate. It's 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.
Tumor issue is scarce and much research for pediatric brain cancer is delayed or never undertaken because there isn't enough tissue available. Even if your child had tumor resected and banked at diagnosis, as Jacob did, additional tumor tissue is still valuable because it may have mutated over time.
Jacob's tissue was sent to several pediatric cancer researchers. We are very happy to report that even this one step has promoted scientific understanding of pediatric brain cancer. One research team reports an important 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 medulloblastoma mouse model from autopsy materials and will be using that model to characterize the tumors.
If you decide to donate tumor tissue, you will not be asked to pay for it. Tissue donation will not interfere with an open casket funeral. People of many faiths have chosen to donate tissue.
I hope you will consider this option and inform your doctor that should your child lose his or her battle with brain cancer, you would like to make a tissue donation as well.
If you would like to talk to me about this decision, I’d be happy to speak to you. My email is: nancygoodman@kidsvcancer.org.
Still with hope,
Nancy Goodman