The day we found out Olivia had brain cancer was the worst day of our lives. We were sick with worry about what the future would hold and committed to doing whatever we could to rid her brain of cancer. It was also the day that we started to become childhood cancer activists. We had such a vested interest in finding a cure not only for our beautiful daughter, but also for the many other children we came to care for as we followed their stories and got to know their families.
Olivia had almost no chance against cancer. She was able to beat it the first time with chemo, as most kids with an astrocytoma are able to. But once it came back in June of this year, her doctor was very honest with us that her chances were not good. The only treatment option left for her was chemo. Olivia’s tumor was inoperable because it was diffuse and spread throughout her brain like a spiderweb. And radiation wasn’t an option either because she was too young, and giving her radiation would have proven to be even more damaging.
When Olivia passed away in October at just 20 months and 3 days old, we were left heartbroken, but determined to make a difference and honor her battle. We had known for awhile that we wanted to start a foundation to fund pediatric brain cancer research. And God has provided for us every step of the way. With every question, there was an answer that made perfect sense.
One of the easiest decisions we made was to make the neuro-oncology lab at Children’s Hospital Colorado our benefactor. The lab is headed by Dr. Nick Foreman, who was Olivia’s neuro-oncologist. We knew that Dr. Foreman was brilliant the moment that we met him. He was incredibly knowledgable and seemed so confident in his abilities as a doctor. And Olivia adored him! No matter how crummy she felt, she would always light up for him and was happy to cooperate for any exam. And he definitely seemed to love her and care for our family.
The day we found out that Olivia was terminal was truly horrible. I was alone with Olivia at the hospital because we thought the MRI was just to check to see if she needed a shunt. We decided it made more sense for Brett to stay with Wyatt at our hotel so he could take his afternoon nap. I was sitting in the family meeting room when in walked Dr. Foreman, Olivia’s neurologist, her primary nurse and a fellow. I instantly knew it was bad news. All those people had never come in to give me MRI results before. And as I heard those horrible words, “Olivia is going to die,” it was Dr. Foreman that held me while I sobbed. I will never forget that show of compassion and the look of deep sadness in his eyes. And it was evident again the next day when we came back to meet with him as a family to discuss hospice care.
We decided to fund Dr. Foreman’s neuro-oncology research lab because of his brilliance, his compassion and his dedication to his craft. We were never aware of all that he did in his lab during Olivia’s battle, but we have since toured it and learned a lot about his work. He and the other five principal researchers are doing phenomenal work that is saving children’s lives. They’ve already discovered several treatment options that have dramatically increased the survival rates of several pediatric brain cancers. For example, they found a very important treatment option for Gangliogliomas. Gangliogliomas are tumors of the brain common in childhood. When in an area where they could be removed the outcome was good. However they often arise in the brainstem (the fuse box of the brain) and in this location, where they could not be removed they were usually fatal. Their research lab identified in most of the children with ganagliogliomas of the brainstem that they had a mutation in the Braf gene (v600e) that drove the tumor. They demonstrated in the lab that brain tumors with this mutation could be targeted with a single agent. They then showed in a single patient with a ganglioglioma of the brainstem that had failed therapy that this agent could control the tumor. So important was this finding that this single case report was published in the lead oncology journal. Now many other children both at our center and other different centers have been treated with this agent with great success.
And, while you may be wondering if we are limiting ourselves by only funding one research lab, I can assure you that we are not. Every important finding in their lab is taken to Children’s Oncology Group (COG), which is nationwide and in charge of setting up national clinical trials that benefit children all over the U.S. Plus, they do a lot of work with other research labs overseas, including hospitals in Toronto and in Germany. By funding this one research lab, we can ensure that they have the money to continue to make important, life-saving discoveries without having to spend so much time fighting for time-consuming grants.
We fully believe in our research team and their ability to find a cure. And we trust them to use every cent for that purpose. We hope that you will help us support them in their efforts to find a cure for pediatric brain cancer research by donating to our foundation. Simply click on the “Donate Now” button to the right of this post and help us fight to find a cure!
Dr. Foreman sounds like an amazing person. I hope and pray that a cure for cancer is found. Have you connected with Maya Thompson? Her son Ronan died from neuroblastoma. She writes http://www.rockstarronan.com.
My thoughts and prayers are with you and your family now and always. xo