From a mother's heart, I thank you for your support. Being the parents of an adult child living with a brain tumor has its ups and downs. No matter what we are going through as parents, we always think about how much harder this daily journey is for Katie.
We do get scared and anxious sometimes (before the last successful surgery and radiation, in May of 2021, and also before each quarterly brain scan) but we don't live in fear. That's because we know Katie is in great hands with a team of doctors at Duke that are relentlessly researching and adopting new protocols for patients living with brain tumors. Thanks to them, Katie is able to live a mostly normal life.
She does take daily seizure medicine several times a day, and since her last surgery, she also takes Tibsovo, an IDH1 inhibitor that blocks blood flow to the tumor to prevent growth. This medicine was initially FDA approved only for leukemia patients but Katie's doctors started her on it right after her last surgery. Last summer, Tibsovo was approved by the FDA for use in brain tumor patients. The medicine costs $30,000 a month but with Katie's health insurance and the wonderful financial team at Duke, Katie gets the medicine at no cost after her deductible is met each year. Being on Tibsovo requires Katie to have bloodwork and an EKG each month, which she handles with grace and thankfully, the medicine is working with no significant side effects.
As you can see, we have so much to be thankful for. We are always thankful for you - our friends and family who have always supported us on this journey.
Every dollar we raise for the Preston Robert Tisch Brain Tumor Center at Duke accelerates the hope, research, and care they provide to countless families. Remember, our collective efforts aren't just about numbers – they're about real lives and real stories just like Katie's.
This year we are celebrating 13 years our girl has been strong and healthy thanks to the treatment and medicine she receives from her team at Duke. She is brave and amazing and we are proud to participate in this fundraiser for her and for all the patients like her at the Preston Robert Tisch Brain Center at Duke.
We hope you will join us. Thank you for being one of our of Angels!