Tonight's picture was taken on January 12, 2009. Mattie was sitting in a bed at Memorial Sloan Kettering in NYC. He was there to start his first infusion of an immunotherapy drug for Osteosarcoma. The condition of using this experimental drug was it had to be started at Sloan Kettering. This was a day I will never forget nor will I forget Sloan Kettering. A hospital that I wish NEVER to say again! Ever. It is as large as a factory and the type of care and attention you get are equal to that of being on an assembly line. I had it out with everyone there, including the main researcher of the clinical trial. He conveniently failed to tell us the extensive blood draws and other testing Mattie would have to undergo before his medication infusion. An infusion in which they did not want to use his broviac catheter but to insert an IV in his arm. I went ballistic and took Mattie off the study but still demanded the medication. In addition to that fiasco they felt that they had to x-ray Mattie's chest to make sure his broviac catheter was inserted correctly. Mind you this catheter was inserted at Georgetown Hospital and it was how he had been receiving his chemo, blood draws, and all other medications for the last five months. I even had Mattie's scans with us to show Sloan Kettering that the catheter was fully functional. But forget it, they insisted on taking their own x-rays. If that wasn't bad enough they did not prepare us for the nasty reaction Mattie was going to have to the immunotherapy infusion. Right after the infusion they sent us back to the hotel. It was in the hotel that this frightening scene unfolded --- high fevers, Mattie was shaking like a leaf and also seemed listless --- and when I called their after hours number, they were LESS than helpful! However, what we learned was Mattie needed Demerol (a narcotic for pain) after almost every immunotherapy infusion.
Quote of the day: The weird, weird thing about devastating loss is that life actually goes on. When you’re faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking. ~ James Patterson
Patterson's quote tonight is so true! While you may be personally dealing with grief and loss and your world is collapsing all around you, the rest of the world seems to be just fine. It is spinning, functioning, and business as usual. It is a feeling that is hard to describe, yet if you have experienced loss, trauma, or something else that is life altering you know exactly what I am talking about. I would have to say that this realization is the first true encounter a bereaved person has with reality... and the reality is that there is me and everyone else. Unfortunately to add to this, I would say that this feeling (especially with a traumatic loss) can last forever.
I am signing off for tonight. I spent a lot of time working at the computer today, but as always no day is complete for me without sharing a Mattie memory of the blog.
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