I read back on the blogs I posted last year, there was so much that I could not write at that time. I am going to take you back to a moment a little more than a year ago. It was Sunday, August 21, 2011. Nathan was not breathing very well. Fluid was accumulating in his lungs. The oxygen alarm started even with him being on continuous oxygen.
The doctors had notified me that he had veno-occulsive disorder. When we signed consent at transplant, they told us it was awful and hard to treat. But they said his risk was low because he hadn't had chemo before. His liver was shutting down due to micro blood clots. The body then goes into multi-organ failure and death if not treated. He was turning yellow, even the whites of his eyes because his billirubin level continued to rise. He continued to retain more and more fluid. His belly was distended, his liver was so enlarged that it was like a cantaloupe sticking out of his side. I couldn't hold him because he was in too much pain. The mothers yearning is to comfort her child, but I couldn't he would scream in pain if he was held because his belly hurt too bad.
Our doctor came in the room that night. I should've taken a clue that it was bad if the doctor was still here in the evening. I could tell by her bed side manner that the news was not good. She would not be as friendly, and was some what distant. She explained to me that with Nathan's condition, there was a 50% mortality rate. There was one medicine with a 50% chance of working. They had taken other steps to reduce the stress on his liver. They had done all they could do. It was up to his body to see if it would heal. I remember asking her, "Are you telling me there is a 50% chance he will die?" She said yes. I was alone with my son. I prayed over him, just begging God to heal his body. There was nothing else man could do. I was left wondering what God's will was.
My reaction was to isolate myself from everyone. Although, it really wasn't my choice anyway. My parents asked if they could come up, I told them no. I told my mother in law not to come in. They had to be cleared 24 hours in advance to come in, I did not want to leave his bed side. I was alone. Alone with the continous sound of the oxygen alarm. At that point in time most of my family had never even seen Nathan due to isolation in the bone marrow unit. If he would have died, they never would have seen him alive.
I had an incredible nurse that night. Karen had lost a child too, in fact his name was also Nathan. Together that night she prayed with me. She prayed with me to beg God for my son's life.
For some reason the emails I sent out, I downplayed the seriousness of his condition. I called it "delicate", or "serious". I do not know why . . . I did not take pictures at the worst. But in the days leading up to the worst, this is what he looked like.
I say all of this, first of all to share my story. But I also say this because recounting this makes me so thankful for where we are today. It makes me thankful for how far we have come. I am thankful for my son's life. God has been faithful to us.
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