Just got off of the phone with Dr. Scheel at John Hopkins University, he is amazing!
Just to update you all I sent a lengthy email which outlined seven questions I wanted answered. The two most important being 1.) What is that growth on my Pancreas? 2.) What is the long term consequence of ECD on my bones?
He had his secretary call me to set up a appropriate time to call, which was nice because so many of these doctors call during work hours and expect me to be able to talk (which of course can't happen).
DawnMarie and I listened as he went through each point explaining his thoughts and his plans to address each concern that I expressed. He expressed on more then one occasion that I was not wrong in having concerns and he was happy to answer them. This was nice.
Final conclusion on Pancreas...he doesn't think that the Pancreas growth is anything other then ECD tissue (which shouldn't be an issue in the long run), but he is going to have one of the specialists at JHU take a look. He then said this Dr. who was going to review the films invented the CT scan so if he says its all clear then you don't have anything to worry about. The funny thing is he might actually be serious when he says this guy invented the CT Scan, with the specialists at JHU you never know.
Final conclusion on consequences of ECD on my bones...if the treatment works he believes I will eventually be relieved of all pain and that all issues will resolve themselves. I find this optimistic viewpoint a little hard to believe considering just 2 years ago ECD patients had a estimated survival rate of just 5 years.
But perhaps it will grow on me. Who knows, maybe the glass is actually half full.
As usual only time will tell what God has in store for our family.
Just to update you all I sent a lengthy email which outlined seven questions I wanted answered. The two most important being 1.) What is that growth on my Pancreas? 2.) What is the long term consequence of ECD on my bones?
He had his secretary call me to set up a appropriate time to call, which was nice because so many of these doctors call during work hours and expect me to be able to talk (which of course can't happen).
DawnMarie and I listened as he went through each point explaining his thoughts and his plans to address each concern that I expressed. He expressed on more then one occasion that I was not wrong in having concerns and he was happy to answer them. This was nice.
Final conclusion on Pancreas...he doesn't think that the Pancreas growth is anything other then ECD tissue (which shouldn't be an issue in the long run), but he is going to have one of the specialists at JHU take a look. He then said this Dr. who was going to review the films invented the CT scan so if he says its all clear then you don't have anything to worry about. The funny thing is he might actually be serious when he says this guy invented the CT Scan, with the specialists at JHU you never know.
Final conclusion on consequences of ECD on my bones...if the treatment works he believes I will eventually be relieved of all pain and that all issues will resolve themselves. I find this optimistic viewpoint a little hard to believe considering just 2 years ago ECD patients had a estimated survival rate of just 5 years.
But perhaps it will grow on me. Who knows, maybe the glass is actually half full.
As usual only time will tell what God has in store for our family.
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