This July will mark 9 years since my daughter, Olivia, was first diagnosed with an aggressive brain cancer. These kinds of anniversaries are dispersed all throughout the year, with each one just as difficult as the others.
People have often asked me how I am able to keep going when I have to not only live with her loss each day, but talk about it daily due to my work at the Olivia Caldwell Foundation. My answer is always that if it wasn’t for my ability to keep her memory alive and have a tangible way to keep being her mom, there is no way I would have been able to survive the loss of my only daughter.
It also helps tremendously to know that my daughter is paving quite the legacy and making a huge difference in the lives of other children who are battling cancer!
In fact, because of Olivia, our research team has actually found the cure for the type of cancer that killed my own daughter! And they found that cure only a few years after Olivia passed away. That fact still amazes me, even though it’s also very bittersweet.
Because of my girl, other children with her same type of cancer will not only be able to survive their battle, but the entire treatment process and diagnosis looks completely different because of the work done by our research team.
When Olivia was diagnosed with cancer, she endured a surgical brain biopsy to determine the pathology of her tumor. Her biopsy came back as a Grade 2 astrocytoma, which meant she would receive two different high-intensity chemos in the hospital via IV chemotherapy. This chemo was delivered in the hospital for 3 days every third week with the chemo making her really nauseous and it made her lose all of her hair.
If she was diagnosed with cancer today she would still have a surgical biopsy, but would also have a blood test along with it, which would tell her team what the driving genetic mutation is that is causing her tumor to grow. Today, they would be able to tell that her tumor isn’t just a Grade 2 astrocytoma, but also that it is driven by the FGFR1 mutation (which caused her immune system to turn cold and ignore the cancer cells, allowing them to run wild).
And today, Olivia wouldn’t be treated in the hospital with an IV chemotherapy that would cause her to get sick and lose her hair. Instead, she would be treated at home with an oral chemo tablet, and her hair and appetite still fully intact!
How amazing is that?! And also how bittersweet is it that this cure and treatment transformation came about 5 years too late to save my little girl?
This is why we press on and work as hard as we do at the Olivia Caldwell Foundation. We strive each day to honor the life of Olivia and to ensure that other kids don’t have to meet a similar fate.
Thank you for all of your continued support! You are saving lives and giving children a hope for a better and healthier future like never before.