This story is about two sisters. Bridget is 14 years old and just celebrated 11 years off treatment for Pleuropulmonary Blastoma. When Bridget was two, she was diagnosed with this very rare form of genetic lung cancer. At that time I was pregnant with her little sister, Anna, so the genetic part stuck out to me. Bridget went through a lot of surgeries and a lot of chemo, but she made it through.
Her sister was born and we watched her closely because Pleuropulmonary Blastoma shows up at an average age of 2 years old. When she got to 5 years old we breathed a sigh of relief, however, through research done at the National Institute of Health and at the Pleuropulmonary Blastoma Registry we were learning of all sorts of different cancers and diseases that are associated with the gene mutation causing PPB, Dicer 1.
Dicer 1 was discovered in 2009, the same year Bridget finished treatment. We were the third family to participate in the Dicer 1 gene study, so very little was known. Over the years more and more findings occur, but it always is because one of our Dicer 1 families got a new diagnosis. Anna’s cancer developed when she was 7 years old. She had an even rarer form of cancer called Medullaepithilioma (eye cancer).
In 2018 when Bridget was 9 years cancer-free and Anna was two years cancer-free they both were found to have multiple nodules on their thyroid that were growing rapidly and some rather large and gnarly. They both had their thyroids removed and both were found to be non-cancerous.
A month later Anna was found to have a mass in her nose. It was a Chondromyoschemal Hamartoma. It was removed, but 3 months later, another was found and removed. Since then, she has had no evidence of disease.
Bridget is now in long-term follow-up annually at the clinic. Anna continues to be scanned every 3 months.
My family along with friends who also had a daughter with cancer began a nonprofit called BrAva named after BRideget and AVA, our forever 6-year-old friend who lost her battle. BrAva has raised awareness and money for research and for local families fighting childhood cancer in our area since 2011. We have donated over $300,000 to CureSearch and to local families to help pay bills, get groceries, buy gas for hospital trips, etc. We currently have over 50 families as part of our BrAva group.
Since this pandemic occurred we have not been able to have our 3 top fundraisers for the year, however, we have “adopted” five new kids from our area who have been newly diagnosed. We do not, as a group, have the funds to donate to CureSearch this year as we have done in the past, but we want to contribute as best we can individually. That is why we walk.
Desni Crock
