Cry a big cry in hotel. I should be happy as he is getting first injection of new treatment tonight. He gained 10 lb in one week after TPN everyday. Surprisingly, there is no water built-up on lungs or belly this time. His skin feels better and the wrinkles of some area disappeared. He used to be so dry, after on Lasix for a while. But, his tummy is big now. Dr. had thought he has water retention in tummy and planned to drain him with needles. Ultrason doesnt show much water in belly. So the only possibility is that his tumors grew in just two weeks. They grew so much that his whole tummy is now popping out. I can hardly look at his tummy. He couldnt sleep last night, unable to find a comfortable spot. Had a long talk with Dr. today. Without any drug, he has weeks. With PD1, if it works, I dont know how much time he has. If it doesnt, it could have side effects which you are aware of. Then he talked about how I need to react if worse happens. I dont know how I could sit there listening to all he said calmly. PD1, the miracle for many, might be too late for him as the disease progressed so fast. We need to stay here for a while. Im glad we came because he is in good hands and his nutrition improved a lot. But I fear, I fear we go home without him. Pray for Joey, pray for his pain going away, pray for his another new day. Pray for children like him suffering and fighting, pray for those leaving us, pray for those grevieving.
Posted on: Wed, 15 Oct 2014 01:34:05 +0000
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