After much research, discussion and heartache we have decided NOT to enroll Rhett in the Clinical Trial.
Afinitor is a chemo drug. Has been used for years in the treatment of Oncology. Do I really want to risk Rhett's immunity? The suppressed immune system, the mouth sores, the slow healing, the risk of respiratory infection, etc etc are all side effects that I do not want Rhett to experience if he doesn't have to.
The next challenge is that Novartis does not provide any travel allowance for Rhett. This trial would require us to be in Vancouver weekly for 12 weeks. We live a province away. Logistically that is difficult. The effect this would have financially, time wise, and on our other child is huge.
Couple these two topics with the fact that it is a double blind study.....well, it wouldn't be beneficial to Rhett.
These decisions were very hard to come to terms with but now that we've made it, I am ok with our choice. Sometimes I just need to listen to my inner voice, or the Higher Power that is putting road blocks in my way. Yes with great effort I could work out the financial and travel concerns, but at what cost to my family. At what cost to Rhett? The fact that there were so many road blocks and concerns tells me that this Trial is not meant to be for Rhett. Sometimes, I need to just tune in and be grateful for what we have.
Having said all that, the TSC treatments Rhett is currently undergoing will remain as the status quo.