Tuesday, November 25, 2014

Dearly Departed Drawings ~ Kole {day 329}

June 14, 2008
"This morning our phone rang at the RMH and we were told to hurry over, because we have a diagnosis officially. We had to hurry up and wait and it was killing us (heart attack practically). Finally, a new oncologist, showed up and she told us Kole has RHABDOMYOSARCOMA, which is a soft tissue cancer that originates from muscle. This was one of the three that the oncologist believed he had it narrowed down to even before the official diagnosis. They believe it originated in Kole's chest muscle behind the ribcage. They said that because of the size of the tumor, that it is in advanced stage. It has not spread to any other area of his body, however, at least no test that they have done so far suggests so. The plan of attack, chemotherapy which they are starting in about an hour. They are mainly concerned with reducing the size of the tumor as fast as possible in order to give relief to his liver, lungs, airway, and heart. The goal is to get him off the ventilator and chest tube as quickly as possible so that he can be moved out of the PICU and into a less intensive area up here on the seventh floor. They said that this is a pretty rare sarcoma, and that although 20% of all childhood cancers are sarcomas, that this particular type only affects about 250 children a year in the US, out of 12,000 children who develop cancer each year.

We always knew Kole was special, and now he is even more special. 

They said it is really too early for prognosis, although they expect to have the tumor shrunken enough in about 3 months to begin to think about surgery to remove it. We should still be here in the PICU for another couple weeks. Please continue to pray for us, as I do believe they are being answered. They are very optimistic for us here. Right now we need prayer that the tumor will respond well to the chemo. Thank you for all of your love and support. For visitors, please note that now that he is starting the chemo, that he will be vulnerable to infection, and it is extremely important that no one is sick. I will keep updating as I can, right now I want to go back and be with him."

Today I nearly finished up the outlines of the spindles and background.  I still have some more lines to get on the paper before I remove the grid and really get to work.  This portrait will spill over into the New Year, seems fitting for Kole.  This is the worst stage in my humble opinion for the world to see my unfinished work.  I cringe at the harsh uneven lines and my OCD is wanting to fix it all and hide it from the world until completion.  I see the blog is getting amazing attention for this amazing little boy and his story.

"It's really nice that someone wants to express him. besides me."

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