Our daughter, Lauren, has an aggressive, fast growing, malignant brain tumor called pineoblastoma a type of PNET tumor. She first fought it at aged 3 and again at aged 5. Despite spending about half her life in active treatment she is a happy 8 year old. She continues to defy the less than 5% chance of survival she was given at relapse, however, I cannot say she is healthy. She falls in an undefined category because chemo stopped working, yet she has visible tumors in her brain and spine. They haven’t grown in 2 years, but doctors think there is too much tumor burden to stay dormant, but they don’t know.
Living MRI to MRI is both pure joy and pure fear at same time. If her tumors start to grow again, we have no treatment options left. I have people tell me all the time, “kids do so much better with cancer than adults” or “they are making such strides with cancer research.” I know this opinion is usually based on personal, painful experience with cancer. BUT…No, NO! These statements are not true.
Let me give you an example: In Lauren’s first treatment protocol she received a drug called Thiotepa It is an orphan drug developed in the 1950s. Let me reiterate this, it was developed in the 1950s-- almost 70 years ago!
We live every day with hope, but know the next isn’t guaranteed. We want more than hope. We want modern, successful treatments for Lauren and other child with PNETs and pineoblastomas. Brain tumor research overall is wildly underfunded, not to mention pediatric brain tumor research. With this research fund our goal is to make it possible for a researcher to include pineoblastoma/PNET for existing or in new brain tumor treatments.
Please help us make this happen with St. Baldrick’s.
Donations made to Lauren's Pediatric Pineoblastoma Fund have funded a St. Baldrick’s Research Grant for Richard Lu, Ph.D. at Cinncinati Children's Hospital Medical Center.
The St. Baldrick’s Foundation is guided by a Scientific Advisory Committee, comprised of leading experts in the childhood cancer community, to ensure that every dollar makes the greatest impact for kids with cancer.
These people make us smile - they're the doers and money-raisers on behalf of the Lauren's Pediatric Pineoblastoma Fund. They're shaving their heads, hosting events, starting fundraisers and more to make childhood cancer research possible.
Start your own St. Baldrick’s head-shaving event to raise money on behalf of our Hero Fund! You’ll be paired with a staff member who will walk you through every step of the process, and you’ll have fun knowing you’re doing a great thing for kids with cancer.
Register to shave your head and raise money for our Hero Fund at any St. Baldrick’s event happening around the world! Not finding an event near you? Register as a virtual shavee and shave your head anytime, anywhere.