Hello out there!!!
Well I was one week away from the end of my chemo. I was really ready to move onto the next chapter in my life. I am now 22 and have been with Dan for 3 years now. Not saying that I am ready for marriage but I would like to at some point be able to have a life outside of NIH with my other half. How can I make any plans for my life when I am bound to a disease like cancer. Everything is always up in the air, and at the last second changes. I don't know when the last time I got a break for more then a month. ONE MONTH. Luckily, I have friends that are close and I live 15 minutes from NIH. I don't know how life would be if I was away and had to fly everywhere; though I do want to get out and experience the world. I will be done with the chemo in one week and who knows what will be next.
We found out that my mom has Lyme's Disease. She has really been out of sorts lately and this explains it all. So now on top of me having cancer, she has to fight her own battle with lyme. The doctors put her on all sorts of antibiotics. She feels different every day and it is hard to keep it all balanced. I try to help out around the house as much as possible but I never feel like it is enough. I wish I could just do it all to take the burden off my mom, but with both of us a little funky feeling, our lives have been put on hold. Living each day and time flying by.
A look into the future......
They have made a recent discovery with antibody treatment and Ewing's. This is great. It is the first new treatment since I was diagnosed in 2004. When I heard about the news I was ecstatic. This was the reason I had faught so long, the pot of gold. This is what will allow me to move on. The only problem....a trial had not opened at NIH yet. With my treatment, and the new discoveries, there has to be a trial somewhere that can accept you. Once drugs and treatments are done the trial phase they get approved by the FDA and become mainstream. I don't know how long it will be until this happens but I hope I will get on a trial soon. This new treatment is definately bitter sweet. I have watched so many people lose the fight; I can't help but think "if only they had lived until now". But there is a reason for everything.
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