Did you know that Only 4% of federal government cancer research funding goes to study pediatric cancer? 4%!!!!

Alivia's cancer was extremely rare and likely received little to none of that ridiculously small percent. We all have a gene (named DICER1) that somehow helps prevent tumors, but in some people, like Alivia, her DICER1 gene was mutated, making her at a higher risk for certain cancers. The most common type of cancer associated with a DICER1 mutation is a lung cancer known as PPB (Which is why it is often called the PPB/DICER1 Registry).  

'The International Pleuropulmonary Blastoma (PPB) / DICER1 Registry is a resource for physicians, healthcare providers and families, offering valuable information about this rare childhood tumor. We encourage the collection of biological data to seek the cause of PPB and its possible genetic links, as well as collaborate with physician and families around the world in caring for those diagnosed with PPB-related diseases.'

As soon as we reached out to the team on the Registry, they took us in and offered us every resource they had (for free). The head physician was willing to give us her cell phone number and spoke with us directly as well as to Alivia's oncologist. Throughout her whole fight they reached out, consulted with every new doctor, analyzed tissue samples, continued to provide updated information, and shared in our heartbreak as it returned again... and again. It is really rare to find a group that is so emotionally involved and also so devoted to the science. 

Alivia was part of the DICER1 registry and her blood and tumor tissue samples were collected throughout each phase of her fight, along with all of her imaging to help uncover more information about potential DICER1 therapies and monitoring. She was proud to know that what she was doing could be helping other kids. She was even able to donate samples from the most recent tumor/fluid after she passed. We know this would have also made her really proud! She did not want anyone to have to go through her fight, and we hope and pray that her contributions to this special group will help find a cure!