Blake's Giant Cell Tumor

I am Blake's mother, Kristen. In January 2008 Blake began complaining of pain in his lower back. He was having difficulty walking and sitting. To be honest I thought he was just out of shape. Blake is a very quiet young man and never complains. Eventually, he agreed to go to the emergency room one weekend. They diagnosed him with lower back pain and sent him home with some pain meds. Blake went to the emergency room two more times, to a primary care doctor and then to several specialists. Finally, an ortho doctor decided to do and MRI. Blake could barely lie flat on the table even with pain meds. On 3-4-08, two days after his 19th birthday we were told that he had a Giant Cell Tumor of his sacrum. If you don't know alot about the sacrum it is the bone that your spinal cord rests on and the nerves running from the spinal cord are woven into the holes of the sacrum like tapestry. It is not your tailbone. The doctor here in Virginia, where we live, told us that no one here locally would be prepared to handle this and that we would need to go to an academic school, like UVA or Duke. We chose Duke University in Durham, NC. Blake had surgery on 3-21-08 to remove the tumor and have a bone graft. It was a major surgery and very scarey. When he was able to return home we brought him home. Two days later Blake began to have severe headaches and stated that he felt like fluid was leaking out of him. I took him to our local children's hospital emergency room after having contacted Duke. Of course, they did not want to touch him because they had no idea what they were dealing with... They transported us back to Duke by airplane. Blake had a spinal fluid leak. While in the hospital they operated again, repairing his dura and cleaning his wound as it was soggy and broken down from the spinal fluid. They also took some samples and swabs and later found out that he was growing infections in his surgical site. They believed he had a bone infection. Now Blake has a huge wound on his back with a wound vac (which is a wonderful thing) and a pic line so he can now get IV's at home to treat all the infections. I have never seen so many medications.... Blake has to return to Duke for a scheduled check up a week or so later and on our way back from the nurse calls and tells us to turn around as Blake is in renal failure. Blake is now back in the hospital at Duke, for the third time!

I have to stop writing now as I get overwhelmed looking back....I will come back and write as much as I can....Blake and I are leaving tomorrow for a check up in Texas at MD Anderson as he just completed 6 weeks of proton radiation there...