Growing Brain Tumor--SEGA

In July we were informed by her neurologist that she had a growing brain tumor that must be dealt with. It was a scary meeting, but we are strong, and we will fight. There are two ways to go about handling these tumors--brain surgery or Afinitor (a drug). We have chosen Afinitor. It is a chemotherapeutic drug that has been shown to shrink brain tumors amongst other things. Afinitor stops cell growth rather than killing cells like conventional cancer drugs. (Lily's tumor is not cancerous). This drug is an amazing breakthrough in tuberous sclerosis!! It has helped so many children with TSC, and the side effects are mild compared to most comparable drugs in it's genre. The most common side effects are lowered immune system, mouth sores, lowered appetite, and fatigue; however, most of the TSC moms that I've spoke with have not reported severe side effects, and their stories bring me a lot of hope. Nonetheless, we are afraid. Sometimes it seems that as soon as we finish one fight with this disease, we are on to the next fight and breaks are not a part of the design. However, Lily is such a trooper and an amazingly strong girl. I'm humbled by her ability to handle this disease, and it gives me strength that I never knew I had. She doesn't even cry when they take blood...I kid you not...she has amazing coping skills. So come with us. Stand by our side. Let's fight this tumor. And let's do things that they say can't be done!