Thursday, June 25, 2009
Today we were supposed to be at Penn to start the clinical trial, we did not go.
It is a very long story, but the long and the short of it is, is that Penn dropped the ball in many different areas. They did not have all of their information gathered at the same time, which required me to have to do a lot of scrambling . We do have appointments set up for next week. I am not sure if we are keeping them or not. There is a possibility that Shane really does not qualify for the clinical trial. Which is a good thing. We will have more information in the beginning of next week. For now, Shane and I are going to enjoy our weekend getaway in Washington D.C.
Thursday, June 18, 2009
I know I haven't posted in a while. I think I needed a break from everything.
It seemed that everything hit our family at once and when things slowed down after Ethan's surgery, we took the opportunity to relax and just be.
That being said, Ethan is healing beautifully from his surgery. He bounced back quickly, his smiles, spirit, and spunk returned as soon as we got home. Ethan's voice is slowly returning. The doctor said it could take up to 6 months for it to fully return. he keeps asking Shane and me when he can scream again, it is very cute.
Today, Shane and I went down to Penn to meet with the oncologist. It seems that Shane meets the criteria for the clinical trial she is conducting. We actually thought that he might start today, but because of lack of communication on their part, he won't be starting until next week.
This is a placebo controlled clinical trial study, which means that 2 out of 3 patients will receive the actual drug and 1 out of 3 will get a placebo. Obviously we are hoping that he will be getting the drug. We won't know for sure for maybe a month or 2. There are some side effects of the drug that may or may not develop. We just have to be aware and know what to expect. During this clinical trial, Shane will be closely monitored by his oncologist at Penn. Scans will be done every 2-3 months to determine 1, if the tumors are shrinking and 2, if he actually is getting the drug or placebo.
We are still trying to absorb all of this information. It is a lot to take in. We will be spending a lot of time down at Penn while they monitor Shane through the study. This is a new chapter for us in this fight and we are ready!
On August 23rd, I will be running/walking with Team Frankel in the Livestrong Challenge. It is a 5k run/walk to support those living/fighting cancer. If you wish to donate, please go tophilly09.livestrong.org/teamfrankel33 and look for Team Frankel.
That being said, Ethan is healing beautifully from his surgery. He bounced back quickly, his smiles, spirit, and spunk returned as soon as we got home. Ethan's voice is slowly returning. The doctor said it could take up to 6 months for it to fully return. he keeps asking Shane and me when he can scream again, it is very cute.
Today, Shane and I went down to Penn to meet with the oncologist. It seems that Shane meets the criteria for the clinical trial she is conducting. We actually thought that he might start today, but because of lack of communication on their part, he won't be starting until next week.
This is a placebo controlled clinical trial study, which means that 2 out of 3 patients will receive the actual drug and 1 out of 3 will get a placebo. Obviously we are hoping that he will be getting the drug. We won't know for sure for maybe a month or 2. There are some side effects of the drug that may or may not develop. We just have to be aware and know what to expect. During this clinical trial, Shane will be closely monitored by his oncologist at Penn. Scans will be done every 2-3 months to determine 1, if the tumors are shrinking and 2, if he actually is getting the drug or placebo.
We are still trying to absorb all of this information. It is a lot to take in. We will be spending a lot of time down at Penn while they monitor Shane through the study. This is a new chapter for us in this fight and we are ready!
On August 23rd, I will be running/walking with Team Frankel in the Livestrong Challenge. It is a 5k run/walk to support those living/fighting cancer. If you wish to donate, please go tophilly09.livestrong.org/teamfrankel33 and look for Team Frankel.
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