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AxleF 
11:30am, August 21, 2009
Well, the National Institute of Health was quite an adventure! For six weeks, there was no tumor growth; then, by week twelve, the tumor was growing again. We were removed from the study, and sent back here for radiation. My daughter started radiation on Thursday. I am sort of angry at myself because if we wouldn't have tried the study, the tumor would have been smaller, less invasive. How can you know these things, especially when the first six weeks went so well! One thing that it did accomplish, is to press my comfort walls WAY out. We had to go to airports, motels, and a new hospital. Lots of new people. Things I probably wouldn't have ever done without the necessity. I so wish that the cancer would go away!
On the bright side, I found out that my son is in honors math! Wow!!!! He is also doing well in football. He is such a ray of light in our lives! (mine and my daughters)
UPDATED GOALS
Not Freak Out at Airport
Progress 100%
Encouragements: 0
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Comments
You never know for certain what would have happened if you hadn't tried the study. I"m glad you found something good in the experience. I hope your daughter enjoyed the time with you.
I am so happy to hear about your son. Good at math and sports! He is one well-rounded kid. You're doing a great job as a mom.
brainbroke
I hope you don't mind me butting in here. I am a Ewing's patient(finished chemo Mar 10th) and I just happened upon your journal. I hope you don't beat yourself up too much. We do the best we can as parents and that is all we can do. I most likely would have done the same as you. You're only human. Hugs to you, Rene
Dianasmom
Thought I would add a note to my own journal. The study drug that my daughter did last year may not have shrunk the tumor, however, it did improve her quality of life 100%. She has not used a wheelchair since then, she plays, jokes, and acts like a normal teenager. Thank God!
AxleF