My Husband was diagnosed w/ grade 4 GBM on June 28, 2007. He was given 3 months to live the night of his diagnoses. My sister in law called and left that message on my voice mail. I thought that I was going crazy. Well after I regained my head and talked to the dumb a** doctor I realized that my husbands life was worth more than a stupid diagnosis. We live in upstate New York and after spending the night crying next to his side I left him at the hospital with his dad and immediatley went to my parents to cry on my sisters shoulder. She as she always has, pulled me up and made me realize that we are here for something more. I looked up doctors in NYC and found a surgeon that would operate (the next day)! He came back from vacation early, he is the first Angel in this story! Then My husband Jason went through 6.5 weeks of radiation that thankfully his mother did the transportation to. Jason was very fatigued and sometimes couldn't get out of the car for 20-30 mins after getting home and the car ride was over an hour. He was on 12-16 mg of Decadron total each day and he ballooned from a size 34 to a size 40 in a very short time. Jason was hungry all the time and his doctor too said he should exercise but he had no energy. After radiation he started Temador 5 days on 23 days off. This lasted for a full year and then he went on a Drug Holiday. This lasted from September 2008 to January 2009. In the meantime we were able to go to Maui on a 2 week vacation, the best vavcation ever! His symptoms came back with eye sight problems which probed us to call his Oncologist in NYC. They found that the Tumor began to grow again and they wanted to start him on the same treatment plan as before. This was not OK with me and I began searching for a new hospital. We saw a commercial on T.V. that gave us a lot of hope and have been traveling to PA at least once a month since February of 2009. Jason has had good days and bad days and it has grown since then. We make the best of the time we have together and continue on the road to healing. He went through 5 cycles of CPT-11 w/ Avastin, Vinblastin, and Procarbosine. We are currently in Wayne, PA for Cyberknife Radiation. Jason is a fighter and no matter what we do we fight everyday!!! We have Aetna insurance and yes we have had to fight for some stuff but everything has been covered thus far. We have had some out of pocket expenses going to the hospital in PA since it is privately owned but I think it has been like $500 since February.
For those that wonder if the fight is worth it, IT MOST DEFINETLY IS! I would not change anything about the last 2.5 years of our lives. It has brought us closer to each other and to GOD. Now we are ready for a cure. We pray everyday and are willing to help whomever contacts us. If you need to talk please email me @
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http://www.cancercompass.com/common/guidelines.html-- I will help or talk if possible. God BLESS!